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Mobility Scooters and Wheelchairs. Who Pays and Other Good Stuff


 

 

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Nobody grows up obsessed with the idea of getting a mobility scooter or a wheelchair. They are not on anyone’s wish list unless your physical mobility is limited. While these means of transportation offer disabled people a new sense of freedom, they also bring some new and unexpected realities to life.

This blog is primarily about how to select a mobility scooter Medicare 2and how to determine if Medicare will pay for it. At some future date I might focus on other issues important to the disabled.

You will likely find that my emphasis is on scooters and that’s only because they the most common and least expensive way to get from one place to another if walking is not an option. Also, I am a mobility scooter user. We may address motorized wheelchairs specifically later. There are, though, some commonalities both share. One thing is certain. Your life is in for some big changes once you accept the keys to your new ride.

bob on scooter bahamasScooter or wheelchair? That’s probably not awheelchair decision you will have to make, your physical condition may dictate what will work best for you, Disabled World offers this explanation. (http://tinyurl.com/b4gxgl)

Issues to Consider when Buying a Mobility Vehicle:

  • Electric wheelchairs tend to be far more expensive than mobility scooters
  • If you need to transport your personal mobility vehicle, a compact mobility scooter can be folded up to fit in a trunk or a back seat. Alternately, you can carry them behind a car with a trailer. Most electric wheelchairs do not fold and are too heavy for a simple trailer.
  • If you have a wheelchair-modified van, it is easier and safer to tie down an electric wheelchair than a mobility scooter
  • An electric medical scooter is steered with bicycle-like handlebars, whereas electric wheelchairs use a joystick. If you have issues with upper body mobility, a wheelchair might be easier to control.
  • If you have posture issues, a wheelchair usually offers more features and support to help you, including motorized stand, tilt, and recline options.
  • If you need to stay in your mobility aid for most of the day, a wheelchair is usually more comfortable.

The right choice of a personal mobility vehicle depends on how you are planning to use it.

  • Are tight corners an issue?
  • Would you like to fully enjoy the great outdoors, or are you more interested in shopping?
  • Will you be running local errands, using public transportation, or using your own vehicle to move your personal mobility vehicle?

Once you answer these questions, you will be able to make the right choice for your specific situation.

I am the owner of two mobility scooters because I have COPD and can’t walk very far. One of the scooters is for outside the home and the other is for venues that offer flat, even surfaces upon which I can ride. Both of my scooters were paid for privately, no government funds were applied for or offered. If you want every minute detail about the process of acquiring mobility vehicles go to https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html  If a summary will satisfy you read on.

who paysLet’s start with the most common question. “Will Medicare pay for my wheelchair or mobility scooter?” That single question is the cause of a lot of confusion, because the answer is, “Maybe.”

There are many suppliers who will tell you that Medicare will pay and you may even hear it from trusted friends. Here’s the truth. Medicare will pay up to 80% of the cost of an “approved” scooter or wheelchair if the supplier accepts Medicare assignment. That means they have to agree in writing that they will accept what Medicare will pay and you can be billed for no more than 20 percent of the total. If the supplier does not accept Medicare assignment Medicare will still pay the standard amount, but the supplier can send you a bill for any amount they choose.

So, back to the answer. For Medicare to pay for a manual images (1)(unpowered) wheelchair, a senior must have a condition which prevents them from moving around in their home as they go about daily living. Their disability cannot be resolved through the use of a cane or walker and the wheelchair cannot be necessary only for use outside the home.

For Medicare to pay for an electric or powered wheelchair or scooter the individual must have the same needs as for a manual wheelchair but they must prove they do not have the physical strength to operate it. In addition they must demonstrate they have the ability to control the powered device without hurting themselves or those around them. Key pointimages (2)
here. You have to show that you need it to get around in your home and that your home is barrier free.

In either case, getting Medicare to pay is not an easy task. A written order from a doctor is necessary which must state the medical reason for the need and the type of wheelchair which is required. Be very careful. Medicare fraud is rampant and usually committed by suppliers or others who sell the goods, services, medicine and medical equipment that seniors need.

downloadRecently I met a man my age who had a scooter identical to mine. I asked how he liked it and he told me that not only was it a great scooter but that Medicare had paid for it. Now I know better than that so I asked how that worked and he explained that with the help of his scooter supplier he found a physician who provided the medical certification he needed. Beware – if any supplier has a list of Doctors you can see who will approve your purchase it is likely you will get one fraudulently.

The Medicare website says this about getting started on the road to acquiring a scooter or wheelchair. http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&script_id=189

“Before you get your wheelchair or scooter, you must have an office visit with your doctor. The visit should take place no more than 45 days before the DME (Durable Medical Equipment) order and should deal with the medical reasons you need the wheelchair or scooter.

Your provider must sign an order or fill out a prescription or certificate that states that you need the power wheelchair or scooter to function in the home. The order must state:

Your health makes it very hard to move around in your home even with the help of a walker or cane;

  • You have significant problems in your home performing activities of daily living such as getting to the toilet, getting in and out of a bed or a chair, bathing, and dressing;
  • If you need a power wheelchair, you cannot  use a manual wheelchair or scooter, but you can safely use a power wheelchair and
  • The required office visit with your doctor took place.

The equipment must be necessary for you in the home but you can also use it outside the home. You can get only one piece of equipment to address your at-home mobility problem. Your doctor or other provider will determine what equipment you need based on your condition, what equipment can be used in your home, and what equipment you are able to use.”

Now some other scooter issues.

As we mentioned the scooter has to first be approved for use in your home. If that has been done then you must consider where else you might use it. Medicare might give you some leeway in your choice of vehicles, but not much and if they do and you choose one with all the bells and whistles you could wind up with a hefty bill.

Outside the home, here’s what you should consider.

  • How will you transport it? Assuming you might want toload em up pack it into the back of the mini-van how will you do that? Your scooter will have to be transportable, that means lightweight and easy to disassemble and assemble unless you can afford a power ramp on the back of your vehicle, one onto which you can drive so there’s no lifting or disassembling involved.
  • How much clearance is there between the bottom of the scooter and the road below? My bigger scooter has a little over 5 inches. The new, smaller one has but 2.5. That means if you get into an area without curb cuts you will be unable to use sidewalks and take my word for it, the streets are no place for scooters or wheelchairs. They are much too slow and often invisible to drivers of cars and trucks. Smaller scooters with low clearance can get stopped by ruts, bumps and uneven surfaces very easily and if you are alone, what do you do?
  • Lighting. Most scooters and wheelchairs don’t come with it. Buy a headlight and taillight anyway, you never know when you will be caught out after dark and a scooter or wheelchair without lights is an accident waiting to happen. Some mobility vehicles don’t even come with reflectors, buy a couple of those as well.
  • Safety flag. You should also purchase a safety flag that flagstands about 4 or 5 feet high from the back of your vehicle. It will help both drivers and pedestrians see you coming and add some safety insurance.
  • A basket. Most come with a basket, but if not get one. You will need somewhere to put your “Stuff.” You can even buy drink holders that snap on to your armrests.
  • Because I drive my scooter to the supermarket about a mile away a couple of times a week I drive though areas where homes are being remodeled or built and where other construction work is done. I had several flat tires until I went to a local bicycle shop to have solid rubber tires installed. No more flats. Some will tell you that solid rubber tires offer a much bumpier ride, but the fact is that scooters and wheelchairs ride like skate boards anyway. Get the solid rubber. If you are a purist and insist on pneumatic tires, get a patch kit and a tire pump and keep it in the basket of your scooter because you will need it.
  • Cane holder. If you use a cane you’ll need a holder. The maker of your vehicle probably has them as an accessory or they might even include one at no extra charge.
  • Rear View Mirror. It may sound silly but consider this, you are driving and you need to know what’s in back of you as well as what’s ahead. Rear view mirrors will come in quite handy. You will realize how important they are when you back into someone for the first time.
  • Batteries. How far will they take you, how long will they last and do they come with a charger?
  • Capacity. How much weight will it safely transport?
  • Test drive. Ask to take it somewhere out of the showroom…around the block, into a mall, somewhere where you can get the “feel” of the scooter.

Those are the basics. I know I have only scratched the surface, but perhaps you will find something useful here anyway.  You can add to the list once you have become an experienced mobility vehicle driver – and – you will add to the list. I purposely did not get into Scooter/Wheelchair brands and suppliers. Just Google Mobility scooters/wheelchairs and you will get all the information you need. There are also several Internet forums you can join to chat with other users about their experiences.

wheelchair facing stepsFinally, this word. There have been admirable attempts at making the world more accessible, but they are too few and still too rare. In many buildings you will find stairways and no ramps. Disabled parking is often abused by those who don’t need it. Mobility carts in supermarkets and other businesses are wonderful, if you can get one.  Again, too many people who don’t need them, ride them.  Even the sidewalks can be problematic when cars parked in driveways overlap and block the sidewalk, forcing scooters and wheelchairs into the street. And, most importantly those of us who are disabled are simply not seen.  I can’t tell you how many times people are looking over my head as they walk right into my scooter.

Elevators also present a problem.  If I can get my scooter in all mqdefaultthe way to the back of the elevator before anyone enters there is usually room for several more people and often they will stand back and allow me to do that. On other occasions, though, the crowd surges around me, packs the elevator and then as the door is closing they will look surprised when they see there is no room for me even though I was there first.

Anyone who has a mobility vehicle will have their own stories to tell. None of us want special treatment we only want to be noticed and considered. And, oh, there is one more item. Don’t be surprised when while on your scooter in the company of your significant other a clerk or salesperson will address them not you. For example it is not uncommon for a clerk who would like me to get up to look at something to say to my wife, “Can he walk?” She often says, “Yes, and he hears and talks, too.”

So, the next time you see a disabled person think for just a moment about what it must be like to be unable to walk very far if at all and how riding a scooter or wheelchair presents a whole new set of barriers. A little consideration goes a very long way.

I have written two other blogs on mobility vehicles here on Bob’s Newheart. You can find them by clicking on these links.

https://bobsnewheart.wordpress.com/2013/10/09/mobility-scooter-extended-test-drive-report/

 

https://bobsnewheart.wordpress.com/2013/07/10/mobility-scooters-a-first-time-users-observations/

 

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bobBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

How to Get the Most Bang for Your Prescription Medicine Buck


By Bob Aronson

cartoonI am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD).  I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions.  Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil.  It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease..  Despite being on the market that long, it still retails for about $250.00 for a 30 day supply.  Spiriva is another COPD drug and is often taken with Foradil.  It retails for about $350.00.  I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive.  Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

It is an unfortunate fact of life that prescription drugs are more expensive in America than any other place in the world and as a result if you contract a serious illness like cancer you may not be able to afford the treatment that can save your life, even if you are insured.

It costs a whole lot of money to be sick in this country and a whole lot of people die — not because there iscartoon two no medicine or treatment but because they can’t afford to get well.  That strikes me as being just plain wrong.

Healthcare costs are skyrocketing, but prescription drugs lead the parade. Americans now spend a staggering $200 billion a year on them and the end is nowhere in sight.  The cost of staying alive is growing at the rate of about 12 percent a year.  It appears as though people are taking a lot more drugs than they used to and they are taking the really expensive new ones instead of older, cheaper drugs.  The reason?   Either physicians are pushing new medications too hard or, more likely, people are seeing the ads for new drugs in the media and are demanding them.  Strangely, unlike most other businesses where prices come down with time, that’s not true with drugs.  Price increases are commonplace even with the older ones and the increases aren’t one time adjustments. Often the price tag increases several times a year.

Earlier I pointed out that Americans pay more for their drugs than any other country in the world — but it isn’t just a little more…it’s a whole lot.  On average, the cost of prescription drugs in the U.S. is at least double what people in other countries pay for the same exact prescription and it some cases it is 10 times more.

A 2013 report from the International Federation of Health Plans, says Nexium, the pill commonly prescribed for acid reflux, costs U.S. patients more than $200, while Swiss citizens only pay $60 and people who live in the Netherlands pay $23. But Nexium is a drop in the bucket compared to cancer drugs. http://www.drugwatch.com/2014/10/15/americans-pay-higher-prces-prescription-drugs/

Not long ago CBS’ 60 Minutes devoted a segment to the absurdly high cost of cancer drugs. Correspondent Lesley Stahl reported that many cancer drugs cost well over $100,000 for a year’s worth of medicine. She said that in the fight against cancer, most people can expect to be on more than one drug. The bill for medications can escalate to nearly $300,000, a price tag that doesn’t include fees charged by a doctor or a   hospital. Health insurance companies – including government polices like Medicare – don’t cover the full cost of these drugs. Some policies don’t cover some of these drugs at all. cancerrBut cancer is not alone in the extreme price arena. Drugs for chronic diseases like multiple sclerosis also carry inflated prices. Prescriptions of Copaxone and Gilenya cost about $4,000 and $5,500, respectively and that amount is almost three times more than the most-expensive price in other countries.

In the case of almost every other product sold on the free market, the older a product gets the less it costs. In the case of cancer drugs in America, the inverse is actually true. Novartis developed Gleevec, one of the most popular cancer drugs, in 2001 and sold it for $28,000 a year. By 2012, its cost rose to $92,000. Despite not being a novel treatment, Novartis is allowed to hike up the price every year in the United States.

So If you are a reasonably intelligent person you will ask three questions.  1) Why do these drugs cost so much? 2) What is being done to bring the prices down? And 3) Is there help available to people who can’t afford the drugs that can keep them alive.

Let’s answer the questions one at a time.  First.  Why are drugs so expensive?  Well, if you listen to the bigbig pharma pharma companies they will tell you that the cost reflects their investment in research and development of the drugs.  They will tell you they spend millions on drugs that don’t pan out and that expense is passed on to the patient.  But are they telling the truth?  No they aren’t! Pharmaceutical companies are fond of saying Americans take the lion’s share of the R&D costs for the rest of the world – calling other countries “foreign free riders.” So, drug companies are forced to charge Americans more to recover what they don’t get from other countries.

In fact, the more disturbing truth is that companies charge what they want in the U.S., and it’s a profiteering paradise for them.  U.S. law protects these companies from free-market competition.  For example, Medicare is not allowed to negotiate prices. By law, it has to pay exactly what the drug companies charge for any drug.  In effect our lawmakers told the pharmaceutical companies that they can charge whatever they want and we (the taxpayers) will pay it. Even may insurance companies don’t negotiate or do it half-heartedly.  Companies make billions on most of these drugs, and they receive massive tax breaks for R&D, leading to inflated figures. Another huge portion of the costs are subsidized by taxpayers.

Here’s the sad part of all this R and D and the introduction of new drugs.  Only 1 in 10 of them actually provides substantial benefit over old drugs.  To add insult to injury the side effects of the new entries create the need for more drugs. And — some of these drugs have horrible complications that result in lawsuits to recover damages.

University of Medicine and Dentistry of New Jersey Health professor and policy expert Donald W. Light says, “We can find no evidence to support the widely believed claims from industry that lower prices in other industrialized countries do not allow companies to recover their R&D costs so they have to charge Americans more to make up the difference and pay for these ‘foreign free riders,’”

In contrast, governments in other countries put caps on the price of drugs and negotiate prices based on what the actual therapeutic benefit is. And Big Pharma still turns a healthy profit in other countries, despite costs being 40 percent lower than they are in the United States.

Big Pharma would have many Americans believe that it is disadvantaged by the costs of developing a new drug. The truth is, drug companies are far from impoverished. EvaluatePharma’s most recent report shows that 2013 was the biggest year since 2009 for drug approvals. These new drugs will add nearly $25 billion to Big Pharma’s coffers by 2018, and prescription drug sales will exceed one trillion dollars by 2020.

The health care industry as a whole has more than enough money, with billions left to continue pursuing its interests in Washington.

Big Pharma Spends More on Lobbying Than Anyone

campaign contributionsSince 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

The world’s 11 largest drug companies made a net profit of $711.4 billion from 2003 to 2012. Six of these companies are headquartered in the United Sates: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck, Bristol-Myers Squibb and Eli Lilly. In 2012 alone, the top 11 companies earned nearly $85 billion in net profits. According to IMS Health, a worldwide leader in health care research, the global market for pharmaceuticals is expected to top $1 trillion in sales by 2014.http://www.drugwatch.com/manufacturer/

But the large amount of cash Big Pharma bestows on government representatives and regulatory bodies is small when compared with the billions it spends each year on direct-to-consumer advertising. In 2012, theadvertising industry invested nearly $3.5 billion into marketing drugs on the Internet, TV, radio and other outlets. The United States is one of only two countries in the world whose governments allow prescription drugs to be advertised on TV (the other is New Zealand).

A single manufacturer, Boehringer Ingelheim, spent $464 million advertising its blood thinner Pradaxa in 2011. The following year, the drug passed the $1 billion sales mark. The money in this business appears to be well-spent.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive.  We paysignificantly more than any other country for the exact same drugs. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark.

So you might ask, “What can I do to get the lowest possible price for my  prescriptions?”  Well, there are a few things.  You can shop for the best price and because of the internet that’s become a whole lot easier.  You can look up a specific drug and find the best price at a pharmacy near you.  Here are two resources, I’m sure you can find a lot more https://www.lowestmed.com/Search#/  or http://www.goodrx.com/ All; you pharmacieshave to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs.  The price is hard to stomach but easy to find.  In my zip code 32244 100 Mg Cyclosporine capsules range jn price from $526.00 at Wal Mart to $584 at Target.  If you are a heart pateint and take Carvedilol in my neighborhood it ranges from $4.00 at WalMart to $9.54 at Kmart . Lisinopril also has a wide range.  At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to save money when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs.  Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines.  “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but according to Nelson, many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

Consumer Reports Magazine says that there are other ways to save money, too.  Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these tips.

  1. Request the lowest price.Our analysis showed that shoppers didn’t always receive the lowest couponavailable price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
  2. Leave the city.Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
  3. Get a refill for 90 days, not 30 days.Most pharmacies offer discounts on a three-month supply.
  4. Consider paying retail.At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
  5. Look for additional discounts.All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
  6. Consumer Reports goes on to say that “although the low costs we found at a few stores could entice you to get your prescriptions filled at multiple pharmacies based only on price, our medical consultants say it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions.  Well, there is some limited assistance. Here are some resources.

  1. http://www.medicare.gov/pharmaceutical-assistance-program/

2.http://www2.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

  1. http://healthfinder.gov/rxdrug

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bob 2Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Managing Your Health After an Organ Transplant


A note from Bob Aronson

FacebookWhen you become an organ transplant recipient your life changes.  Not only does the quality of life improve but you have a new awareness of the importance of healthy living.  Transplantable organs are in short supply and those of us who are fortunate enough to get one have a special obligation to take care of it.  It is a gift of life that many never receive and your transplant center will make every effort to help you take care of yourself and your new organ.  Follow their advice, eat healthy, live healthy and by all means, exercise as much as possible.

I have researched and written the great majority of blogs that are published on Bob’s Newheart but not this one.  It was researched and published by the American Society of Transplantation (AST).  I only made some minor editing and formatting changes (the complete post can be found here– http://tinyurl.com/pcteky5).   

This entry is longer than most because it offers critical information that you will need.  It is not only comprehensive in scope,  it is easy to understand and the principles are immediately and easily applicable.  Please take the time to read and thoroughly consider every point.  The information contained here can ensure not only a longer life but one of enhanced quality as well.  And…while this post is meant for transplant recipients, the advice contained here will keep you healthy even if you haven’t had and don’t need an organ transplant.

KEEPING A HEALTHY OUTLOOK ON LIFE

After an organ transplant, there is hope for the future. However, there are a number of health concerns that you will face. For example, there is the chance that your new organ will not always function as well as it should. Transplant recipients also have a higher risk of developing certain conditions such as high blood pressure, high blood lipid levels, diabetes, kidney problems, liver problems, and bone disease. Infection and cancer are also conditions you need to keep in mind. Some conditions can affect any transplant recipient and some conditions are specific to the type of organ transplanted.

CARING FOR YOUR NEW ORGAN

Lab Tests for Measuring Organ Function

It is important to keep all of your scheduled checkups and lab appointments for monitoring organ function. Testing allows your transplantheart of love team to monitor the status of your transplant, detect rejection early, and start effective therapy right away.Common tests for checking organ function are listed below:

Liver function tests — Blood tests are used to monitor liver function (e.g. albumin); damage to liver cells (e.g., alanine transaminase [ALT], Aspartate transaminase [AST]) and some with conditions linked to the path by which bile is produced by the liver (e.g., gamma-glutamyl transferase and alkaline phosphatase)

·    Pulmonary function tests — Tests like spirometry show how well you lungs are working

·    Bronchoscopy — A test that uses an instrument (bronchoscope) to view the airways and diagnose lung disease

·    Chest x-ray

·    Upper and lower gastrointestinal (GI) endoscopies — These evaluations can detect abnormalities of your esophagus, stomach, and intestine
·    Hemodynamic monitoring — Sonar-type echos may be used to detect high blood pressure in your heart and lungs or a catheter may be placed           in the heart for periods of six to 12 hours

·    Echocardiogram — Sonar-type echos can show abnormalities in the heart and lungs

·    Electrocardiogram (EKG or ECG) — Asseses the electrical activity within your heart

·    Renal function studies — Your doctor may ask you to collect your urine (usually for 24 hours) to evaluate if your kidneys are working                         properly. Blood tests such as serum creatinine are performed to measure kidney function

·    Biopsy — A biopsy may also be taken to determine if a rejection episode has occurred. This is done by collecting a small piece of tissue from the       organ and examining it under a microscope

OTHER HEALTH ISSUES

Anti-rejection medications increase your risk of developing certain conditions such as infection and cancer. Other side effects of some anti-rejection medications include high blood pressure, diabetes, high blood lipids, kidney disease, heart attack, stroke, and bone disease. Knowing the risks and taking steps now to prevent them is a good way to keep you and your new organ healthy.

HIGH BLOOD PRESSURE

High blood pressure (hypertension) is a common complication in patients who receive a transplant. High blood pressure can damage the arteries and the heart, increasing the risk of a stroke, a heart attack, kidney problems, or heart failure.For many patients, the cause of hypertension is not known. However, people with kidney disease, diabetes, or high blood pressure before the transplant are at higher risk of high blood pressure after the transplant. Other factors that contribute to high blood pressure after a transplant include a diet high in salt, clogged arteries, high blood lipid levels, smoking, obesity, and some anti-rejection medications such as cyclosporine, tacrolimus, and steroids (prednisone).

Recommended Blood Pressure Levels

People with a blood pressure of 140/90 mm Hg or higher are considered hypertensive. While most transplant recipients should have a blood pressure of 130/80 mm Hg, the ideal blood pressure can vary from person to person. The American Heart Association (AHA) guidelines for the target blood pressure in the general population can also be used as guidelines for organ transplant recipients. Normal blood pressure values for children are based on age, sex and height and in general are much lower than in adults.

  • Normal Systolic (top) 120 Diastolic (bottom) 80
  • Prehypertension Systolic 120-139, Diastolic 80-89
  • Stage 1 hypertension Systolic 140-159, Diastolic 90-99
  • Stage 2 hypertension Systolic 160 or higher, Diastolic 100 or higher

High blood pressure usually does not cause any symptoms so it is important to have your blood pressure checked by your transplant team at regular follow-up exams. Your transplant team may also want you to monitor your blood pressure closely while at home.

Reducing High Blood Pressure

  • Making some lifestyle changes can lower your blood pressure and prevent hypertension
  • Sometimes hypertension can be controlled with lifestyle changes such as diet and exercise, but most patients also require medication.
  • There are a variety of medications for treating and controlling high blood pressure
  • The most commonly prescribed medications include ACE inhibitors, ARBs, calcium channel blockers, beta-blockers, and diuretics. Some of these medications may have interactions with certain anti-rejection medications.

HIGH BLOOD LIPIDS

While lipids (cholesterol and related compounds) in your blood are necessary for good health, too high levels of some lipids can increase your risk of cardiovascular disease, a leading cause of death among transplant recipients. Most transplant recipients develop high blood lipids. Kidney, heart, and liver transplant patients usually display similar elevations in total cholesterol (TC) and low-density lipoprotein (LDL) cholesterol (“bad cholesterol”).Eating the wrong foods, lack of exercise, and being overweight can increase your risk of developing high levels of LDL cholesterol (“bad cholesterol”), high levels of triglycerides, and low levels of HDL cholesterol (“good cholesterol”). Transplant recipients who are obese, smoke cigarettes, or have high blood pressure are more likely to have high cholesterol. Steroids and some of the other anti-rejection medications, such as cyclosporine, sirolimus, and tacrolimus, can also cause high blood lipid levels.

Recommended Blood Lipid Levels

Be sure to ask your doctor what your cholesterol levels should be. In some instances, transplant recipients can follow target levels of blood lipids recommended in the National Cholesterol Education Program (NCEP) guidelines.

Lipid
Low
Optimal
High
LDL Cholesterol

100 mg/dL
160-189 mg/dL
HDL Cholesterol
40 mg/dL

60 mg/dL
Total Cholesterol

240 mg/dL
Reducing High Blood Lipid Levels

not easy but worth itMaking healthy lifestyle changes can lower your chances of developing heart disease. You can help lower your blood lipid levels with a proper diet and regular exercise. A diet low in cholesterol and saturated fats may also help reduce your risk of coronary artery disease. In addition to making healthy changes to your diet, exercising for a minimum of 20 to 30 minutes 3 to 4 times a week can also reduce your lipid levels and lower your risk of heart attack or stroke. If you smoke, it is important that you STOP! If adjustment of your anti-rejection drugs, diet, and exercise are not successful in reducing lipid levels, your doctor may want you to take cholesterol-lowering medications. T

Here are several medications that work to lower blood lipids. The most commonly prescribed medications are called statins, which include atorvastatin (Lipitor®), simvastatin (Zocor®), pravastatin (Pravachol®), fluvastatin (Lescol®), rosuvastatin (Crestor®), and lovastatin (Mevacor®). If your doctor prescribes a statin, you will need to be monitored for side effects because the risk of side effects is greater when taken with anti-rejection medications. You will also need blood tests to monitor liver and muscle function. Other types of medication that your transplant team might prescribe to treat high blood lipids include bile acid sequestrants, nicotinic acid, fibric acids, and cholesterol absorption inhibitors.

DIABETES

High blood glucose can cause many health problems, including diabetes, heart disease, kidney injury, nerve damage, and eye problems.Post-transplant diabetes (PTDM) is more common in transplant recipients who have a family history of diabetes as well as those who are overweight, are taking steroids, or have hepatitis C. Diabetes after a transplant is also more common among African Americans and some other ethnic groups such as Native Americans. Other risk factors for PTDM include older age of the recipient.

Controlling Blood Sugar Levels

Most transplant recipients with diabetes can follow the American Diabetes Association (ADA) guidelines. Patients with PTDM should establish a healthy (weight-reducing, if necessary) diet with a structured exercise program. A healthy diet is needed to prevent diabetes or to help control your glucose if diabetes does occur. For all transplant recipients, it is best to eat a healthy diet and exercise regularly to avoid weight gain and reduce the risk of developing high blood glucose or diabetes. Your transplant coordinator or dietician can help determine your recommended daily calorie intake. Limiting the amount of fats and sugar in your diet can also help to maintain a healthy level of blood glucose.

Treatment Options for Controlling Diabetes

There are several types of medications available for patients with diabetes. Depending on the level of glucose in your blood, treatment with oral hypoglycemic drugs and/or insulin may be indicated. For many transplant recipients, insulin injections or an insulin pump is an option for controlling blood sugar. Or, you may be given an oral medication to control blood glucose levels. Your transplant team will determine which medication is right for you.

KIDNEY DISEASE

Kidney function is often decreased in transplant recipients. This may be caused by a pre-existing condition such as diabetes, high blood pressure, or injury to the kidney before a transplant. Or it may be caused by medications used to prevent rejection after a transplant.The best way to help prevent kidney disease is to keep your blood pressure and blood glucose under control and to maintain a healthy weight. In addition, regular checkups with blood and urine tests will give your doctor important information for detecting early changes in kidney function and allowing appropriate steps to be taken.

BLOOD VESSELS DISEASE

Transplant recipients have a higher risk of developing blood vessel disease. Some anti-rejection medications increase the risk of high lipid levels, which can clog arteries and restrict the flow of blood to the heart and brain. Deposits — called atherosclerotic plaque — can completely or partially block blood vessels resulting in a myocardial infarction (heart attack) or acute coronary syndromes.Likewise, a stroke can occur if an artery that supplies blood to the brain becomes blocked. Partial blockage may temporarily reduce the blood supply to the brain. A complete loss of blood supply to the brain results in a stroke.

BONE DISEASE

Bone disease is a problem for many organ transplant recipients. Organ failure before your transplant may cause bones to become thin and brittle (osteoporosis). Other causes of osteoporosis include use of some anti-rejection drugs (corticosteroids), overactive parathyroid gland, cigarette smoking, and not enough calcium in your diet.

Preventing Bone Disease

There are some basic things you can do to help prevent or treat bone disease.

Exercise regularly, including weight lifting or strength training — be sure to discuss weight limits with your transplant team beforebones beginning an exercise program
Eat foods that are high in calcium, including low-fat yogurt, cheese, and milk
Choose foods and juices with calcium added
Get plenty of dietary protein (unless restricted by your doctor)
Take calcium supplements if directed by your doctor
Take vitamin D only as directed by your doctor
Stop smoking
Your doctor or transplant dietician will tell you if you need to take calcium or vitamin D supplements. Your doctor may also want you to take medications that prevent bone thinning, including bisphosphonates such as alendronate (Fosamax®), etidronate (Didrocal®), and risedronate (Actonel®) or calcitonin.

STAYING FIT

Diet – Things are shaping up

The recommended diet for transplant patients consists of 30% fats, 50% carbohydrates and 20% protein.

Your transplant dietician will give you specific instructions about your recommended daily allowance of specific nutrients. Some tips for following a healthy diet include:

Eat high-fiber foods such as raw fruits and vegetables
Increase your calcium intake by eating low-fat dairy products and green leafy vegetables or by taking calcium supplements (if directed by your doctor)
Eat less salt, processed foods, and snacks
Use herbs and spices to add flavor instead of salt
Drink plenty of water (unless you are told to limit fluids)
Eat as little fat and oil as possible
Eat high-protein foods such as lean meat, chicken (without the skin), fish, eggs, nuts (unsalted), and beans
Select healthier condiments such as mustard, low-fat mayonnaise, and low-fat salad dressing
Instead of frying, try baking, broiling, grilling, boiling, or steaming foods
Instead of using oil to cook, use nonstick, fat-free spray
Exercise

Exercise is a great way to help increase your energy and strength after a transplant. A regular exercise routine will also help you maintain your ideal weight, prevent high blood pressure and high lipid levels, and keep your bones strong. It also helps relieve stress and overcome feelings of depression.Soon after your transplant, you’ll want to start slow with a low-impact activity such as walking. With time, you can increase your workout with more demanding activities such as bicycling, jogging, swimming, or whatever exercise you enjoy. Training with dumbbells, cuff weights, or weights will increase strength and help prevent bone loss, but check with your transplant team first to determine how much weight is safe for you to lift. Stretching exercises are also important for muscle tone and flexibility. Be sure to check with your doctor before beginning or changing your exercise routine.

STOP Smoking

smokingSmoking also contributes to already high risk of cardiovascular, particularly in patients with diabetes and may be detrimental to kidney function. Transplant recipients who smoke should to STOP smoking as soon as possible.

Dental Care

Routine dental care is important both before and following transplantation as oral infections can cause significant medical problems and even death. According to the American Heart Association (AHA), pre-treatment with antibiotics is not needed for routine dental care unless the patient has an underlying heart condition that increases the risk of developing a heart infection. These include patients with heart transplants with graft valvulopathy (or a previous history of endocarditis, prosthetic valves, and certain forms of congenital heart diseases.)Gingival overgrowth (hypertrophy) is a dental issue that can arise in transplant patients especially those using cyclosporine. This occurrence of gingival overgrowth can be reduced by practicing good oral hygiene.

ROUTINE FOLLOW-UP EXAMS

All people should have regular exams to help prevent illness.

As we get older, there are some specific tests that should be done on a regular basis

Self-Monitoring

In addition to the tests that your transplant team will perform at regular follow-up visits, you will need to do some self-testing at home. Here are some things you will need to monitor:

Weight – Weigh yourself at the same time each day, preferably in the morning. If you gain 2 pounds in a day or more than 5 pounds total, call your transplant team.
Temperature – You should take your temperature daily, especially when you feel like you have a fever. Call your transplant team if your temperature is too high.
Blood pressure – Check your blood pressure as often as your transplant team recommends.
Pulse – You should check your pulse daily. A normal heart rate when not exercising should be 60 to 100 beats per minute. (If you have had a heart transplant, your resting heart rate may be as high as 110 to 120 beats per minute.)
Blood sugar – If you have high blood sugar or diabetes, you will need to monitor your blood sugar using a glucometer.
Do not take any pain medication (for example, Tylenol®, Motrin®, or Advil®), cold remedy, antacid, herbal medication, or any over-the-counter medication unless your transplant team tells you to.

PREGNANCY: BENEFITS AND RISKS

For female transplant recipients of child-bearing age, fertility is usually restored immediately after a transplant.

There have been thousands of births among women with transplanted organs.

Although pregnancy is now an expected part of the benefits afforded to women by organ transplantation, there are also a number of considerations. Getting pregnant is generally not recommended within the first year after a transplant because the doses of anti-rejection medications are highest; there is a greater risk of rejection; and many other medications are prescribed that are toxic to the developing fetus. Female transplant recipients of child-bearing age should continue using birth control until the doctor says that it is okay to get pregnant. Male transplant recipients may also be concerned about their ability to have children. Men may have fertility problems related to some transplant medications, but many men have been able to father healthy children after a transplant. If you are interested in, or thinking about, becoming pregnant you must talk to your transplant team first. Pregnancy should be planned when organ function and anti-rejection therapy are stable and there are no signs of rejection, high blood pressure, or infection.

High Risk Pregnancy

According to National Transplantation Pregnancy Registry (NTPR) over 70% of births to female transplant recipients are live births and most have favorable outcomes for child and mother. Although this success is encouraging, these pregnancies are still considered high risk. There are risks of complications during pregnancy for the transplant recipient as well as risk of infection and exposure to anti-rejection drugs for the fetus.For example, there is a greater risk of high blood pressure during pregnancy in the woman who has received a transplant. The risk of infection is higher for all transplant recipients, and urinary tract infections are the most common infections during pregnancy.

Other infections that may cause concern during pregnancy include herpes, hepatitis, toxoplasmosis, and cytomegalovirus. Other risks include preeclampsia and preterm delivery. The fetus is also at risk for infections such as cytomegalovirus and herpes simplex virus related to the suppression of the mother’s immune system by anti-rejection drugs. A common question is whether the baby born to a woman with a transplanted organ will be normal. We know that some babies are born premature to mothers with transplants and that they have low birth weights. It is not known whether there are long-term effects on the baby’s development. You should inform your baby’s pediatrician that your baby was exposed to anti-rejection drugs in the womb.

pregnancyThere is a higher risk of birth defects with some anti-rejection drugs especially mycophenolate mofetil and azathioprine. The levels of anti-rejection drugs in the mother’s blood must be monitored closely. Monitoring of blood levels is particularly important in the third trimester, when fetal metabolism may increase the clearance of anti-rejection drugs from the blood. Ask your transplant team whether or not you should breast-feed. It is not known whether breast-feeding while on certain anti-rejection medications can harm the baby.

A major concern for transplant recipients is whether pregnancy will lead to organ rejection or decreased function of the transplanted organ. In general, pregnancy does not affect organ function or patient survival as long your organ is working very well. But, it is very important to discuss with your transplant team whether or not a pregnancy will be too risky. Because pregnancy is considered high risk for transplant recipients, your transplant team may recommend and work with an obstetrician who specializes in high-risk pregnancies.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ TransplantBob informal 3 Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one persBon to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

DEA Bullying Denies Relief to Those With Chronic Pain


By Bob Aronson

morphine is the best medicine 

I suffer from Chronic Pain and do millions of others and it’s getting more and more difficult to get any relief from it because two federal agencies are bullying physicians.

My neck and shoulder pain started after my heart transplant and some of it was directly related to the position of my arms while I was in surgery.  Many transplant recipients suffer the same fate, but transplant or not if a person is in pain relief should be no farther away than your doctor’s office.  It’s not!

I have received dozens of messages from pain sufferers since I published the previous two posts on the subject of chronic pain and physicians who simply will not prescribe narcotics (1. Why You Can’t Get Pain Meds http://tinyurl.com/knltszh   and (2. Suffering from Chronic Pain? Here’s what you need to know http://tinyurl.com/lzy8o22 and that’s what prompted me to write this third blog on the subject. I’m angry, frustrated and helpless.

The U.S. Drug Enforcement Administration (DEA) mission (more on that later)dea badge is essentially to stop the production and sale of illegal drugs in America. Their “War on Drugs” is well known and it has recently expanded from the poppy fields to the practice of medicine and to pharmacies. 

A few years ago Florida was the state of the “Pill Mills,” places where almost anyone could get powerful prescription pain killers just by showing up at the Doctor’s office. So flagrant were the violations that the DEA had a pill mill 2heyday of arrests and convictions but like many federal agencies they didn’t know when to stop.  Not satisfied with putting the “Pill Mill” docs out of business, they turned to the regular physicians and warned them of investigations and loss of license if they were found to be prescribing narcotic pain meds to people who weren’t in pain.

Many physicians who saw the DEA overreaction to the “Pill Mills” overreacted themselves and decided not to prescribe opioids (narcotics or controlled substances) to anyone.  The result is that many who suffer from chronic pain that cannot be relieved by anything other than narcotics can’t get them and are suffering needlessly.

How chilling is the DEA’s action.  Try this on for size.  44% of American doctors confess that a fear of a police or DEA investigation into their practice influenced the way that they prescribed medications to chronic pain patients. This according to a poll of doctors for the Center for Addiction and Substance Abuse.

The DEA’s actions are harming patients and maybe it is because their mission is the most convoluted, overly broad, confusing detailed mess you’ll ever see. 

Here are three of examples of Mission Statement excellence

  • TED: Spreading Ideas. (2 words)
  • Smithsonian: The increase and diffusion of knowledge. (6 words)
  • USO lifts the spirits of America’s troops and their families. (9 words)
  • DEA (347 words)

(This is only part of it you can see the rest at http://www.justice.gov/dea/about/mission.shtml)

The mission of the Drug Enforcement Administration (DEA) is to enforce the controlled substances laws and regulations of the United States and bring to the criminal and civil justice system of the United States, or any other competent jurisdiction, those organizations and principal members of organizations, involved in the gDEA arrestrowing, manufacture, or distribution of controlled substances appearing in or destined for illicit traffic in the United States; and to recommend and support non-enforcement programs aimed at reducing the availability of illicit controlled substances on the domestic and international markets.

They wrote a mission statement that sets them up to invade anyone at any time for any reason.  If they were legitimately concerned with stopping the flow of illegal drugs their mission statement probably could have said. “The Mission of the DEA is to stop the production and sale of illegal drugs in the United States” (19 words).  Instead, they chose to write a book that gives them the authority to assume more authority.

Essentially what the DEA is talking about is Opioids so let’s start with a definition. opioids What is an Opioid?  According to the National Institute on Drug Abuse opioids are medications that relieve pain. They reduce the intensity of pain signals reaching the brain and affect those brain areas controlling emotion, which diminishes the effects of a painful stimulus.

Medications that fall within this class include hydrocodone (e.g., Vicodin), oxycodone (e.g., Oxycontin, Percocet), morphine (e.g., Kadian, Avinza), codeine, and related drugs. Hydrocodone products are the most commonly prescribed for a variety of painful conditions, including dental and injury-related pain. Morphine is often used before and after surgical procedures to alleviate severe pain. Codeine, on the other hand, is often prescribed for mild pain. In addition to their pain relieving properties, some of these drugs—codeine and diphenoxylate (Lomotil) for example—can be used to relieve coughs and severe diarrhea.

pain cartoonIn their zeal to accomplish the impossible mission the DEA has now ventured into the practice of medicine a discipline for which they are not qualified nor are they welcome.  As a result, thousands upon thousands of Americans are suffering incredible pain.  They can’t get relief because their physicians have been intimidated by the DEA and to a lesser degree the Food and Drug Administration (FDA).  We have here a sort of medical paradox, the feds want to practice medicine and the medical doctors are afraid to. 

This report from the Reuters news agency pretty much sums up the way many physicians are reacting to DEA’s bullying: “Many physicians have increased patient monitoring, which means more urine tests, more documentation, and more frequent “pill count” checks, where patients must go to the prescriber’s office with their pill bottles to prove they have not sold or misused their medication.

“Every hour of the day I have concerns I’ll be audited, that my ability to take care of my patients and my family can be taken away, and I’m as legitimate as you can get,” said one frazzled physicianprescriber who has a private orthopedic practice in Florida. “You’re constantly watching over your shoulder and it takes a toll,” he told Reuters news.

Safety and security are one thing but when a law enforcement agency decides to run rampant over a legitimate segment of the private sector, someone, somewhere ought to stand up and take notice.

In their long but terribly unsuccessful effort to control illegal drugs the DEA has now focused their attention on prescription drugs and in particular those few physicians (most of them were in Florida) who wrote narcotics prescriptions for nearly anyone who wanted them.  And…they’ve been successful. Most of the pill mills are gone, babrams tankut the DEA is like a runaway Abrams tank and is now rumbling over the medical profession.

In typical federal overreaction to the “Pill Mill” crisis, the DEA decided to crack down on all physicians by letting them know that they were being watched and that they had better be damned sure they were prescribing narcotics for real pain and not to junkies.

The overreaction by the Feds was met by an equal overreaction by many physicians.  They just quit prescribing opioid (narcotic) pain meds because they don’t want the hassle. Both the feds and the docs seem to have forgotten us patients.  We are the ones who get the short, sharp, infected end of the stick.

Not satisfied with their efforts, but impressed with their nearly effortless intimidation of the medical profession the DEA then decided that while they concentrated on powerful narcotics like oxycontin and oxycodone the effort should not stop there.  They also bullying imagewanted restrictions on a lower level of painkillers as well so they crossed the street and bullied the FDA into telling docs they had better be careful when they prescribe Vicodin and Lortabs.  Both contain hydrocodone and are usually combined with over the counter analgesics like aspirin or Tylenol.

The result?  If you suffer from chronic pain you are going to have a very difficult time getting any drug containing a narcotic or other controlled substance.  The medical profession has been scared to cause many docs to refuse to prescribe narcotics or any other controlled substance including drugs like Valium which is non-narcotic but still a controlled substance.

Many so-called “Pain Clinics” will not prescribe narcotics at all for any reason. Instead they will look for “root causes” and try a raft of anti-inflammatory and other treatments.  And, to be fair, in some cases those “other treatments” work, but while the pain experts are searching for non-opioid solutions, the patient suffers. I know I’m one of them.  When I asked one pain clinic doc for narcotics after repeated failed attempts to control my pain he said,”I can’t do that, see your primary.”  The “can’t” part of the answer is pure BS.  Won’t is the correct word to use — won’t because he has been intimidated by the feds.  I endured weeks of agonizing, debilitating pain because they refused to prescribe narcotics even though nothing else was working.

There are some docs who have the courage to practice medicine despite thewe are watching you fact that two powerful federal agencies are threatening them with a minimum of being investigated and a maximum of license revocation.  Physicians feel as though they are constantly being watched.

My primary care doc understands that I really do suffer from chronic pain and that I have tried other approaches that have failed.  Despite that, to protect his license he monitors my use of the Oxycodone he prescribes very carefully.  He requires that once a month, when it is time for a prescription refill he sees me in his office where he reviews my case, questions me about my pain level and then reminds me of the dangers of opioids even though I have never sought an increase in dosage and am not an addict.. 

I still believe that while the DEA and the FDA are being heavy handed, physicians who are licensed to practice medicine and fail to prescribe drugs that have been proven to be effective must bear some of the responsibility for the suffering many chronic pain patients are experiencing.  

eyes in the darkReminiscent of so many tyrannical regimes the DEA absolves itself of any responsibility for the suffering they have caused among patients with chronic pain.  Here’s what they told The National Pain Report.  

“The agency is not trying to limit access to opioid painkillers. And if legitimate pain medication prescriptions are not being written or filled, it’s the fault of doctors and pharmacists, not the government,” said DEA spokesman Rusty Payne. 

“We’re not doctors. We’re regulators and enforcers of the law. If something is prescribed for a legitimate medical purpose, we’re certainly not going to get in the way.  If a pharmacy chooses not to fill a prescription for someone, that’s their decision. It’s not the DEA’s decision,” he said.

To me that’s a whole lot like a cop stopping you for no good reason, warning you about speeding and then telling you that he and other cops are watching you very carefully to be sure you abide by all the rules.  Then, if due to fear you just quit driving they say, “That was his choice, we didn’t tell him to stop driving.”

So our bottom line is this. If you have chronic pain and all the non-narcotic remedies don’t work you are going to have to grin and bear it for a while.  No physician in this environment is going to write opioid prescription for someone who walks in from the street complaining of pain.  You are going to have to prove it.  Your chances of getting relief maybe better from your primary care physician but bring evidence of your pain

  • X-rays, MRIs, CT scans
  •  Written diagnosis, prognosis, treatment and instructions from other physicians or emergency departments
  •  Prescription records
  •  Police or other reports if you’ve had an injury
  • Reports from physical therapists or Chiropractors
  • Anything else that will help prove your claim that you have chronic pain and that opioids may be your only relief.

If you want a primary care physician to help you, it is going to take a little time to build a relationship and he or she may even want you to repeat some tests you have already undergone.  Be prepared to hurt for a while because it is unlikely that any physician you have not seen before will prescribe a narcotic pain killer after only one or two appointments.  That’s what our friends at DEA have done for us.

If all of this really gets under your skin, call, write, email, text, holler at or visit your Congressional Representative, Your Senator and/or The President of the United States.

-0-

bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

 

 

Commonly Used Medical Terms Made Clear


By Bob Aronson

cartoonTo most of us the abbreviations and phrases used in the medical world are another language from another planet.   Few understand what is written on the prescription they take to the pharmacy just as they don’t always understand the discharge instructions they get from a hospital or an emergency room.

To save time and clarify communication internally medical professionals have developed a very special system of codes, abbreviations and phrases that are quite exact in their meaning.  Unfortunately these same professionals often forget that the rest of us don’t have their training, education and expertise and use this “internal” language on patients who are often left dumbfounded because of a reluctance to ask for clarification.

The picture to the right is a real prescription and when you see it for the first time you probably are struck by the sameillegible prescription question most of us have, “How on earth does the pharmacist read that mess?”  Well,  the answer is that pharmacists understand the code words, phrases and abbreviations used by physicians but, they get stumped just like you do so they call and ask for clarification.   You should do that, too.   If you aren’t perfectly clear about what your medicine is and what it does you should seek clarification  first from your doctor and then from the pharmacist.

The list of common medical terms below was taken from several sources and I have tried to simplify it as best I could but should you be confronted with these terms or others not listed here that you still don’t understand don’t be afraid to ask and ask again until you have a perfectly clear explanation.  After all, it is your health, your body and your life and the medical people owe you a clear explanation of your condition, your diagnosis, prognosis and treatment plan including the medicine they have prescribed and what it does.

Miscommunication can be deadly.  You owe it to yourself to ask a lot of questions.  If you have done that and find that after processing what you heard you have more questions you should call your physician’s office for clarification. Do the same with your pharmacist or any other medical professional with whom you have contact.

Below is a list of the most common medical terms and abbreviations.  Note…you will see a mixture of upper and lower case entries.  These are not typos.   It is the way they are actually written.

Common prescription terms and abbreviations

AD: up to (defining a limit.)

BUSS: Inside the cheek

C: (With a straight line over the top ): With

cf: With food

h.s.: at bedtime

bid: twice a day

tid: three times a day

qd: daily

o.p.d.: once per day

q.a.d.: every other day

q.i.d: four times a day

sig: write on label

SL: sublingually, under the tongue

WF : with food

Terms and abbreviations used in prescriptions and elsewhere

a.c.: Before meals. As in taking a medicine before meals.

Ad lib At liberty. For example, a patient may be permitted to move out of bed freely and orders would, therefore, be for activities to be ad lib.

AKA: Above the knee amputation.

Anuric: Not producing urine.  That means the patient may need dialysis.

Bibasilar: At the bases of both lungs. For example, someone with pneumonia in both lungs might have abnormal  breath sounds.

BKA: Below the knee amputation.

BMP: Basic metabolic panel blood test.

BP: Blood pressure.. Blood pressure is one of several vital signs.

BSO: Bilateral salpingo-oophorectomy.  The removal of both of the ovaries and adjacent Fallopian tubes often part of a total abdominal hysterectomy.

C/O: Complaint of. The patient’s expressed concern.

cap: Capsule.

CBC: Complete blood count

CC: Chief complaint. The patient’s main concern.

cc: Cubic centimeters.

Chem panel: Chemistry panel. A comprehensive screening blood test to determine the status of the liver, kidneys and electrolytes.

COPD: Chronic obstructive pulmonary disease.

CVA: Cerebrovascular Accident (stroke)

D/C or DC: Discontinue or discharge. Adoctor will D/C a drug or DC a patient from the hospital.

DM: Diabetes Mellitus.

DNC, D&C, or D and C: Dilation and curettage.  Widening the cervix and scrapping with a curette for the purpose of removing tissue lining the inner surface of the uterus.

DNR: Do not resuscitate. This is a specific order not to revive a patient artificially if they succumb to illness. If a patient is given a DNR order, they are not resuscitated if they are near death and no code blue is called.  Usually requested by the patient or family.

DOE: Dyspnea on exertion. Shortness of breath with activity.

DTR: Deep tendon reflexes. These are reflexes that the doctor tests by banging on the tendons with a rubber hammer.

DVT: Deep venous thrombosis (blood clot I large vein).

FX: Fracture.

H&H: hemoglobin and hematocrit.  When the H & H is low, anemia is present.

H&P: History and physical examination.

h.s.: At bedtime. As in taking a medicine at bedtime.

H/O or h/o: History of. A past event that occurred.

HA: Headache.

HTN: Hypertension (high blood pressure)


I&D: incision and drainage.

IM: Intramuscular.. This is a typical notation when noting or ordering an injection (shot) given into muscle..

IMP: Impression. This is the summary conclusion of the patient’s condition by the healthcare practitioner at that particular date and time.

In vitro: In the laboratory.

In vivo: In the body.

IU: International unit

JT: Joint

K: Potassium. An essential electrolyte frequently monitored regularly in intensive care.

KCL: Potassium chloride.

LBP: Low back pain. LBP is one of most common medical complaints.

LLQ:: Left lower quadrant.

LUQ:: Left upper quadrant..

Lytes: Electrolytes (potassium, sodium, carbon dioxide, and chloride).

MCL: Medial collateral ligament.

mg: Milligrams.

ml: Milliliters.

MVP: Mitral valve prolapse.

N/V: Nausea or vomiting

Na: Sodium. An essential electrolyte frequently monitored regularly in intensive care.

npo: Nothing by mouth. Often ordered when a patient is about to undergo surgery requiring general anesthesia.  It means no food or drink.

O&P: Ova and parasites.  Stool O & P is tested in the laboratory to detect parasitic infection in persons with chronic diarrhea..

O.D.: Right eye.

O.S.: Left eye.

O.U.: Both eyes.

ORIF: Open reduction and internal fixation such as with the orthopedic repair of a hip.

P: Pulse. Pulse is recorded as part of the physical examination. It is one of the “vital signs.”

p.o.: By mouth. From the Latin terminology per os.

p.r.n.: As needed. Example a pain killer may be taken only when the patient has pain or “as needed.

PCL: Posterior cruciate ligament..

PERRLA: Pupils equal, round, and reactive to light and accommodation.

Plt: Platelets, one of the blood forming elements along with the white and red blood cells.

PMI: Point of maximum impulse of the heart when felt during examination, as in beats against the chest.

q2h: Every 2 hours. As in taking a medicine every 2 hours.

q3h: Every 3 hours. As in taking a medicine every 3 hours.

qAM: Each morning. As in taking a medicine each morning.

qhs: At each bedtime. As in taking a medicine each bedtime.

qod: Every other day. As in taking a medicine every other day.

qPM: Each evening. As in taking a medicine each evening.

R/O: Rule out. Doctors frequently will rule out various possible diagnoses when figuring out the correct diagnosis..

REB: Rebound, as in rebound tenderness of the abdomen when pushed in and then released.

RLQ: Right lower quadrant. The appendix is located in the RLQ of the abdomen.

ROS: Review of systems. An overall review concerns relating to the organ systems, such as the respiratory, cardiovascular, and neurologic systems.

RUQ: Right upper quadrant. The liver is located in the RUQ of the abdomen.

s/p: Status post. For example, a person who had a knee operation would be s/p a knee operation.

SOB: Shortness of breath.

SQ: Subcutaneous.. This is a typical notation when noting or ordering an injection (shot) given into the fatty tissue under the skin, such as with insulin for diabetes.

T: Temperature. Temperature is recorded as part of the physical examination. It is one of the “vital signs.”

T&A: Tonsillectomy and adenoidectomy.

tab: Tablet

TAH: Total abdominal hysterectomy..

THR: Total hip replacement.

TKR: Total knee replacement.

UA or u/a: Urinalysis.. A UA is a typical part of a comprehensive physical examination.

URI: Upper respiratory infection like sinusitis or the common cold

ut dict: As directed. As in taking a medicine according to the instructions that the healthcare practitioner gave in the office or in the past.

UTI: Urinary tract infection.

VSS: Vital signs are stable. This notation means that from the standpoint of the temperature, blood pressure, and pulse, the patient is doing well.

Wt: Weight. Body weight is often recorded as part of the physical examination.

Commonly used prefixes and suffixes

http://www.bubblews.com/news/2020191-what-did-the-doctor-just-say-some-common-medical-terms-prefixes-and-suffixes

Prefixes

1. “Angio…”
Related to the blood vessels
(Angioplasty, etc.)

2. “Lobo…”
Relating to either the brain or lungs.
(Lobotomy, etc.)

3. “Nephro…”
Relating to the kidneys.
(A Nephrologist is a doctor who specializes in medical conditions impacting the kidneys.)

4. “Hyster …”
Relating to the uterous.
(Hysterectomy, etc.)

5. “Gastro …”
Relating to the atomach
(Gastroenteritis, etc.)

6. “Myo…”
Related to muscle tissue.

6. “Arthr…”
Related to the joints.
(Arthritis, arthoscopic surgery, etc.)

7. “Encephal…”
Related to the brain
(Encephalitis, encephlitiform activity, i.e. seizures.)

Suffixes

1. Something or other… “itis”
Whatever the ‘something’ is is inflamed and possibly infected.
(Pancreatitis, appendicitis, tonsilitis, etc.)

2. “…ectomy”
The removal of whatever body part precedes it.
(Appendisectomy, tonsilectomy, hemorrhoidectomy, hysterectomyetc.)

3. “… otomy”
A surgical incision into whatever precedes it.

4. “… scentesis”
The surgical puncturing of something – deliberately
(Amnioscentesis to draw fluid from the uterine sac to check on the condition of a fetus.)

5. “…septic”
From a Greek word meaning putrefaction (rotting), as “spsis” it is used to refer to an infection of the entire system, particularly through the circulatory (blood) system and is considered quite seious.
The opposite, of course, is “Antiseptic”… the purification of something from germs and bacterial contamination.

6. “… ostomy”
The putting a hole in something in the hopes that it will help it function better.
(colonostomy)

7. “… plasty”
To modify or reshape.
(A “nose job” is a rhinoplasty, etc.)

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Bob informal 3Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Why You Can’t Get Pain Meds


dea cartoonBy Bob Aronson

This is not my first post on this subject and it will no be the last because Americans with real pain are suffering needlessly.

Chronic pain is real.  I know, I have it and right now thousands of U.S. docs are refusing to prescribe narcotic pain killers not because people don’t need them but rather because federal agencies in their zeal to eliminate “Pill Mills” have frightened physicians.

They’ve told docs they run the risk of being investigated if they can’t prove an absolute need for every opioid prescription they write.  The result is that docs don’t want or need the hassle so many of them are saying, “No” to all requests for pain killers even when they know the requests are legitimate.  It happened to me and it is happening to thousands of others as well.

Federal agencies have gone over the edge on this one.  Their strong-arm tactics aimed at stopping a few unscrupulous physicians may result in some license revocation and brief incarceration while thousands if not millions of chronic pain sufferers are condemned to living with extreme discomfort and excruciating pain.  Have they spent any time thinking through the effect of their intimidation of doctors and pharmacies?   Do they really think that taking drugs away from people who need them will affect the trafficking of prescription meds?

While I understand physician’s reluctance to write prescriptions in the face of pressure from the feds I also think their behavior is as arrogant and irresponsible as the feds.  Physicians take an oath to treat the sick and to do no harm and by refusing to treat patients with with provable, legitimate pain they are violating both promises and risking the physical and mental health of their patients. 

Ever since I published my first blog on the subject I’ve received a constant stream of emails, tweets, Facebook messages and phone calls from people who have been cut off by their physicians.  Just this morning I got this email;

“bob, just read article on crackdown on narc . I have bladder cancer, replaced knee that was screwed up .  Other knee has to be replaced, have torn rotator cup right arm, bulging discs in c5 & c6. so yesterday my doc cut out my Lortabs because of letter from DEA.   Is this right & what do I do?”

What is most bothersome to me is that I don’t really have an answer other than to shop around for a doctor that will prescribe what he/she needs.  Certainly the oncologist should be sympathetic. This is a very serious problem but it is unlikely to be addressed because everyone is afraid…Afraid of being “Soft on narcotics enforcement,” afraid of being hassled, afraid of jail time.  It’s very sad and it is wrong.

Chronic pain is serious.  Millions suffer from it as the result of arthritis, accidents, broken bones, cancer and scores of other reasons.  I am one of them.  I have osteoarthritis and it hurts.  Without narcotic painkillers I would be immobilized.  With them I am functional and feel pretty good.  I don’t get high, I don’t’ abuse them I take them for their stated purpose – pain.

The Drug Enforcement Agency (DEA) has been hunting down “Pill Mill” doctors for years and they should.  It is an unfortunate truth that some real doctors will write prescriptions for almost anyone for an exorbitant fee.  Florida was the prescription drug capitol of the world until not long ago.

DEA is so obsessed with illegal narcotics that they don’t care who gets hurt along the way.  They have now persuaded the Food and Drug Administration to “Recommend” that physicians be more careful in their prescribing of hydrocodone (an opioid also known as Lortab or Vicodin).  The result of the DEA/FDA suggestions, warnings and recommendation is that physicians are just refusing to write prescriptions for narcotic painkillers or, in some cases any controlled substance including Valium. It’s not that docs are afraid of getting arrested, that’s quite unlikely.  They just don’t want the hassle of federal agents bugging them for detailed justification about the prescriptions they are writing for pain killers.

My primary care physician still provides me with the Oxycodone I need but I’m not so sure how long he’ll be able to hold out before he, too, will bend to the pressure from the feds. As the law stands now, a physician cannot call or fax a narcotic painkiller prescription to a pharmacy and those prescriptions are not refillable. To protect himself my primary care physician requires that I see him once a month for a pain evaluation before he writes new script.  Then with prescription in hand I must personally take it to a pharmacist.

I have written two blogs on the subject and there might be more coming.  You can find them at https://bobsnewheart.wordpress.com/2013/07/17/why-your-doc-wont-prescribe-narcotics-no-matter-how-bad-the-pain/     and at   https://bobsnewheart.wordpress.com/2013/12/10/suffering-from-chronic-pain-heres-what-you-need-to-know/

If you want to do something about this talk to your congressman or senator and get them to either deal with the issue legislatively or to put pressure on the FDA and DEA to back off legitimate claims for opioids.

Not Long ago the Boston Globe did a story on this issue.  It is well worth your time to read it.  http://tinyurl.com/l3ahgtc

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Bob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Brain Death, Organ Donation and Family Disagreement –How Is It Handled?


artichoke heart cartoon

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

famiy disagreementAn hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conpatient on life supportditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff hadorgan donor card not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.


References

  1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
  2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
  3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
  4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
  5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

Today’s post is the last one of 2013.  Bob’s Newheart blogs are read in 142 countries and average 5,000 readers per month, mostly from the United States with English speaking countries rounding out the top ten.

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We send our best wishes and hopes that all of our readers, followers and friends have a happy, peaceful and safe holiday season. 

Got Chronic Pain & Can’t Get Pain Meds? Here’s What You Need to Know


By Bob Aronson

pain from the spouse pount of view

Chronic pain is of major interest to me because I suffer from it and have been denied treatment as well.  I have an established record as a sufferer and one who has tried a wide range of alternatives to the “controlled substances” the medical profession is so reluctant to prescribe.  I understand that we have a serious addiction problem in this country and that a very tiny minority of physicians over-prescribe controlled substances like Vicodin and Oxycodone.

I also understand that the U.S. Food and Drug Administration  (FDA) and the Drug Enforcement Administration (DEA) are cracking down hard on this activity but in the process are intimidating the entire medical profession in order to rout out the few who recklessly dispense narcotics to nearly anyone who wants them.  I know from first-hand experience and from the testimony of others that many physicians are so intimidated they refuse to prescribe pain killing narcotics to anyone.  I get all that and outline it in detail in this post.

Conversely, I believe that physicians have a unique opportunity and even an ethical responsibility to act as patient advocates rather than to retreat under fire and refuse treatment to those with legitimate pain issues.  The oath that says, Hipocrates“First, do no harm,” is broken any time relief is available but refused not because there is evidence that the patient is being dishonest but because the physician fears investigation. That to me is unconscionable and a terrible disservice to patients. Too many doctors at too many institutions have been intimidated by the threat of investigation and it is patients in pain who suffer as a result.

The publication, Scientific American  says this of chronic pain:  “Anyone living with chronic pain knows that it amounts to much more than an unpleasant bodily sensation. Fuzzy thinking, faulty memory, anxiety and depression chronic pain graphicoften accompany long-term pain, suggesting that the condition is more of a whole-brain disorder than simply pain signaling gone haywire. New research from Northwestern University reveals a possible cause: an impaired hippocampus, a region critical for learning, memory and emotional processing (you can read more by clicking on this link) http://www.scientificamerican.com/article.cfm?id=how-chronic-pain-affects-memory-mood

While chronic pain is a recognized medical condition that often can only be treated with controlled substances it is becoming more and more difficult to find physicians who will prescribe them.  The reasons? Abuse, misuse, suicides, crime, greed and among physicians fear and intimidation.

On October 24, 2013 this headline greeted readers when they picked up their morning paper; FDA Crackdowns on Painkiller DrugsThe move was prompted by one drug in particular — Hydrocodone otherwise known as Vicodin the highly addictive painkiller that has grown into the most widely prescribed drug in the U.S.

vicodinIn a major policy shift, the agency said in an online notice that hydrocodone containing drugs should be subject to the same restrictions as other narcotic drugs like oxycodone and morphine.  What this means is that the regulating agencies first made it difficult to get the major pain killers and now are restricting lesser ones as well.  The question is where will it stop and how will chronic pain sufferers be affected? History tells us that actions like this will cause fewer prescriptions to be written but that many patients who legitimately need these drugs will be caught up in the dragnet and lose their relief.

The latest move comes more than a decade after the Drug Enforcement Administration first asked the FDA to reclassify hydrocodone so that it would be subject to the same restrictions as other addictive painkilling drugs.

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Florida is or was at the epicenter of an explosion in narcotics prescriptions written by unscrupulous physicians who provided narcotics to almost anyone for exorbitant prices.  Pharmacies were caught playing the game with these docs and while the action by the feds reduced the number of pill mills, it also caused great agony for those who suffer from chronic pain and could no longer get relief. (http://www.firstcoastnews.com/news/health/article/333761/10/Pill-mill-crackdowns-hurting-those-in-real-pain

I will return to the legal and ethical conundrums faced by physicians and pharmacists shortly but let’s step back for just a moment or two to look at the human side.  The millions of people who suffer from chronic pain and who depend on controlled substances to provide them with some semblance of human life…and I’m one of them.

American pain foundationThe American Pain Foundation says that chronic pain is a complex condition that affects almost 50 million Americans.  Even after decades of research, chronic pain remains poorly understood and hard to control.

Chronic pain can be severe, so severe it has driven some to take their own lives.  It is a major problem and often even the most potent of pain killers has only a minimal effect.  Here’s how two patients describe their daily battle with chronic pain.

“It feels as though someone has stuck a white hot poker into the bones at the top of my spine and the base of my neck.  The pain radiates to both shoulders and down my back. I cannot stand without help and cannot sit in any one position for very long.  Turning my head is too painful to even contemplate.  Like a master torturer the pain seems to know just where to attack next to make me confess and confess I would – to anything at all if it would just go away for a few minutes.”  That’s the testimony of a Frank R. a Michigan man suffering from chronic pain brought on by osteoarthritis.

In the state of Virginia Mary T. says this. “It is my lower back and both of my legs.  The pain is not intense it is beyond that and it is unrelenting.   Sometimes I am so tired out from battling pain all night I will just sit and cry but the pain monster takes no pity.  I cannot walk without support, so now I have a cane which helps me get around but the pain doesn’t want me to walk and has begun attacking the arm and hand I use to hold the cane.  Death would be a relief; I can’t go on living like this.”

Frank and Mary are fairly typical chronic pain sufferers.  Both take narcotics to manage the pain neither gets much relief anymore because of building high tolerances for opiates.  Both have tried almost everything modern medicine has to offer and narcotics are all that is left to help them but because tolerances go up, one is forced to take more and more of the narcotic until finally the pain subsides – it doesn’t go away it just backs off for a while but the massive doses of narcotics can leave the patient in an almost Zombie like state, unable to concentrate or focus on any task and sleepy, so sleepy that some days patients don’t bother to get out of bed.  The result is that while the pain may be minimized so is the patient’s quality of life.

A survey by the American Academy of Pain Medicine found that even comprehensive treatment with painkilling prescription drugs helps, on average, only about 58% of people with chronic pain.  

What causes chronic pain, and what can you do about it?

Some cases of chronic pain can be traced to a specific injury that has long since healed. Other cases have no apparent cause — no prior injury and an absence of underlying tissue damage. However, many cases of chronic pain are related to these conditions:

  • Low back pain
  • Arthritis, especially osteoarthritis
  • Headache
  • Multiple sclerosis
  • Fibromyalgia
  • Shingles
  • Nerve damage (neuropathy)

Treating your underlying condition is important. But often that does not resolve the pain issue.  Increasingly, doctors consider chronic pain a condition of its own, requiring pain treatment that addresses the patient’s physical and psychological health.

Chronic pain can leave a person almost unable to function and the medical profession doesn’t seem to know what to do about it because they are getting mixed messages from state and federal governments. 

On one hand government says, ”Treat the patient, give them what they need to manage pain,” and on the other the Feds in particular are saying, “There are too many greedy quacks out there handing out narcotics like Pez dispensers and it has to stop.”  Here’s why:

centers for disease controlEarlier this year the Centers for Disease Control and Prevention reported that prescription painkiller overdose deaths among women increased about fivefold between 1999 and 2010. Among men, such deaths rose about 3.5-fold. The rise in both death rates is closely tied to a boom in the overall use of prescribed painkillers. 

The result is that many major medical centers are playing it safe and prescribing narcotics for short term relief following surgeries and a few other specific situations like terminal cancer victims but otherwise are telling patients to see their primary physician for pain relief.  The reason cited by many medical centers is that the laws are incredibly complex and therefore vague. For example, here’s just a short section of New York law (you can read all of it herehttp://www.medscape.com/resource/opioid/opioid-newyork

License. Only practitioners who are properly licensed and registered may issue a prescription for a controlled substance. Section 80.64 contains the full information about who may issue controlled substances.

Purpose of a Prescription. A prescription is the instrument to legalize an ultimate user’s possession of a controlled substance. To be effective then, a controlled substance prescription should be issued for legitimate medical purposes only. Section 80.65 contains the full text.

Initial and Corresponding Responsibilities: Prescriber and Pharmacist. The responsibility for the proper prescribing and dispensing of controlled substances is on the physician, dentist, podiatrist, veterinarian, or other authorized practitioner, but a corresponding liability rests with the pharmacist who fills the prescription.

A practitioner cannot supply prescriptions to maintain an addict or habitual user of controlled substances. There are some exceptions and practitioners should read the New York law very carefully. An order purporting to be a prescription issued to an addict or habitual user of controlled substances not in the course of professional treatment but for the purpose of providing the user with narcotics or other controlled substances sufficient to keep him or her comfortable by maintaining his or her customary use is not a prescription within the meaning of New York law.

It is no wonder physicians are reluctant to prescribe opiates, they fear losing their licenses.  In the preceding paragraph physicians are told they cannot provide controlled substances to addicts or habitual users but many people with chronic pain ARE habitual users and they may be addicted as well, and the New York law could easily be interpreted to read that prescribing controlled substances to chronic pain sufferers is a violation of the law.

In a document with the unwieldy title of; Use, Abuse, Misuses, and Disposal of Prescription Pain Medication Time Tool Clinical Referenceamerican college of preventive medicineThe American College of Preventive Medicine (ACPM) states its position on the patient’s right to pain relief very clearly but the issue gets clouded in the “Challenges” section.  It is easy to see why many physicians find it easier to “pass the buck” by saying, “See your primary care physician for narcotics,” or, “See a physician who specializes in pain for treatment with controlled substances (for the full transcript and more click on this link: http://www.acpm.org/?UseAbuseRxClinRef

 INTRODUCTION – THE RIGHT TO PAIN CONTROL

Adequate pain control is a fundamental right of every patient [1]. A consensus statement from 21 Health Organizations and the Drug Enforcement Agency (DEA) conclude that “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve.” [2]

The consequences of not treating pain are significant [1] [3] and confer a tremendous economic impact [4]. Post-surgical pain increases heart rate, systemic vascular resistance, and circulating catecholamines, placing patients at risk of heart attack, stroke, bleeding, and other complications. Unrelieved acute pain often evolves into chronic pain syndromes, which are linked to a constellation of maladaptive physiological, psychological, family, and social consequences that result in:

  • ·        Reduced mobility; loss of strength
  • ·        Disturbed sleep
  • ·        Decreased healing due to immune system impairment
  • ·        Increased susceptibility to disease
  • ·        Dependence on medication
  • ·        Codependence with family members or care givers
  • ·        Psychological ramifications (depression, anxiety, social withdrawal)
  • ·        Slower return to function
  • ·        Decreased quality of life

. UNIVERSAL CHALLENGE

  • Physicians are currently challenged to deal with the “perfect storm”—a confluence of pain control versus risk of misuse and abuse of prescription medications [5].
  • This perfect storm is co-incident with the more general rise in unintended overdose deaths that may have resulted from aggressive efforts to have physicians treat pain without the education, skill and resources to manage the physiological and psychological complications that can arise when treating a patient for a chronic pain condition. Physicians must be able to safely and effectively prescribe scheduled drugs and, at the same time, must identify and manage misuse and abuse in their practices [6]. Ethics drive physicians to prescribe, but fear of sanctions may affect physician prescribing behaviors, which might compromise quality of care. The problem cannot be ignored because abusers often face complications, such as: [7]
    • ·        Overdoses
    • ·        Addiction and dependence
    • ·        Adverse effects
    • ·        Social and family dysfunction
    • ·        Criminal consequences

The universal challenge is to adequately control pain, having a variety of etiologies, in an environment where evidenced-based medicine is lacking or in conflict, while identifying and managing high risk situations, and possibly treating addictions resulting from initial pain control efforts. Physicians confront the dilemma of balancing pain relief against the reality that some patients may misuse and divert these medications. The scale weighs public health priorities against individual pain and suffering [8].

Some physicians are so nervous about prescribing painkillers that they just flat out refuse to do so. I had it happen to me at of all places a well-known pain clinic.  These physicians fail to recognize chronic pain for what it is and want to find the underlying condition that causes the pain but the fact is the pain is the underlying condition.

J. Donald Schumacher President and CEO of the National Hospice and Palliative Care Organization says, “According to a recent report from the Institute of Medicine, chronic pain itself can be the problem. Such pain can cause changes in the nervous system that worsen over time — even after the original source of the pain has gone away.

Because many doctors are not properly trained in the study of chronic pain, patients often suffer unnecessarily. One study of nursing home residents with chronic pain found that 44 percent were not getting any treatment at all.

In some cases, the need for pain treatment may not be obvious. Older patients, especially those with dementia, often struggle to communicate their needs.

Yet according to a report from the Hartford Institute of Geriatric Nursing at New York University, the burden to communicate with patients who may be in pain does not rest with the patients. Clinicians must take on that duty. They can do so by learning to identify non-verbal behaviors, such as “agitation, restlessness, aggression, and combativeness,” which “are often an expression of unmet needs.”

Old age must not become an excuse for the failure to pursue effective treatment for pain.

Of course, patients must assume some responsibility for treating their pain, too. Approximately 50 percent of patients do not take their medication as prescribed. Many mistakenly wait for pain to recur before administering another dose. Such on-again, off-again treatment just results in cycles of pain — rather than preventing it altogether by maintaining adequate levels of medication in the bloodstream.”

Schumacher also believes this, “Whatever the condition causing the pain, the person best equipped to take the lead in finding the proper treatment is the sufferer. People know their own bodies, and they can judge when medications are inducing unwanted side-effects.

No one deserves to be incapacitated by chronic pain. The means to alleviate it are available. All that’s required is the will to find the right treatment.”

So what else can patients do to get relief when the system seems obsessed with denying it?

In a Web MD Story, Rollin M. Gallagher, MD, MPH, director of pain management at the Philadelphia VA Medical Center said, “Today’s pain specialists understand how the sensation of pain occurs — how the nervous system, including the spinal cord, interacts with the brain to create that sensation.

Insights into the neurotransmitter system — the chemical messengers that pass nerve signals — have opened the door for important new modes of chronic pain relief, he explains. In recent years, scientists have learned how to manipulate those chemical messengers to change the way they interact with the brain’s signals.

That’s led to use of antidepressants and other drugs that work with specific brain chemicals that affect emotions, and help with perception of pain. We now have a whole new host of medications that are very effective for chronic pain relief,” Gallagher tells WebMD. http://www.webmd.com/pain-management/features/chronic-pain-relief-new-treatments 

medtronicIn November of 2011 Medtronic Corporation the manufacturer of a wide variety of medical devices announced a new treatment for chronic pain. In a news release the Minnesota corporation said, “The U.S. Food and Drug Administration (FDA) has approved AdaptiveStim™ with RestoreSensor™ neurostimulation system, the first and only chronic pain treatment that harnesses motion sensor technology found in smart phones and computer gaming systems to provide effective pain relief and convenience by automatically adapting stimulation levels to the needs of people with chronic back and/or leg pain.

The news release went on to say, “Data from the U.S. RestoreSensor clinical trial demonstrate that the AdaptiveStim with RestoreSensor neurostimulator provides effective pain relief and convenience. At the end of the study, 86.5 percent of study participants with chronic pain, who were included in an intent-to-treat analysis (n=74), experienced somewhat better or much better pain relief with no loss of convenience, or somewhat more or much more convenience with no loss of pain relief, when the device’s AdaptiveStim technology was turned on, compared to a control period when the participants manually adjusted neurostimulation settings using a patient programmer. With AdaptiveStim, study participants reported functional improvements, including improved comfort during position changes (80.3 percent).”

Not to be outdone, Boston Scientific is also in the chronic boston scientificpain management business On April 12 of this year they announced, Boston Scientific Corporation (NYSE: BSX) has received approval by the U.S. Food and Drug Administration and is beginning a limited launch of the Precision Spectra Spinal Cord Stimulator (SCS) System.  The Precision Spectra System is the world’s first and only SCS system with Illumina 3D™ software and 32 contacts, and is designed to provide improved pain relief to a wide range of patients who suffer from chronic pain.

The news release added, “The Precision Spectra System represents a paradigm shift in spinal cord stimulation,” said Giancarlo Barolat, M.D., medical director of Barolat Neuroscience in Denver.  “The Illumina 3D Software is the first SCS programming technology based on advanced anatomical and scientific principles.  When combined with 32 contacts and four lead ports—twice that of any other SCS system—the Precision Spectra technology gives physicians more flexibility to customize therapy for patients.”  

Medications for Treating Pain http://www.livestrong.org/we-can-help/preparing-yourself/finding-a-counselor/

Cancer pain is often treated with one or more medications. If you have concerns about taking certain medication, discuss this with your health care provider and pharmacist. Ask about long-term medication usage and side effects, such as allergies, constipation, sedation, memory impairment or other reactions.

  • For mild pain: Medications such as acetaminophen or non-steroidal anti-inflammatory drugs (NSAIDs) may provide relief. Some of these drugs, such as ibuprofen or naproxen, can be purchased without a prescription.
  • For moderate pain: Medications that combine an opioid (sometimes called a narcotic) such as hydrocodone or oxycodone with acetaminophen or aspirin may be needed. Vicodin and Percocet are examples.
  • For severe pain: Medications that contain an opioid only (sometimes called a narcotic) such as morphine, oxycodone, fentanyl or methadone are usually needed. These narcotic medications may be given orally or intravenously (or sometimes both).
  • For bone pain: When associated with metastatic cancer treatment for bone pain can include bone-strengthening steroid medication known as bisphosphonates. (Radiation therapy and surgery may also be very effective in relieving symptoms.)
  • Antidepressants medications: Amitriptyline and duloxetine, for example, can be very helpful in managing chronic pain.
  • Gabapentin and pregabalin: Originally developed to treat epilepsy, these can also be used for chronic pain, including neuropathic pain caused by nerve injury.
  • Topical anesthetics: Lidocaine pain patches, for example, may be helpful in some cases.

Complementary Pain Relief Options

Complementary (also called alternative or holistic medicine) treatments include massage, acupuncture, meditation, biofeedback or hypnosis. For some types of pain, heating pads, hot or cold packs and massage may be soothing and can help to reduce pain.

A health care provider may recommend counseling to help a patient cope with their pain or other distressing symptoms. Stress can make pain worse. It can also lessen the effect of pain management medications.

To learn more about these types of therapies, contact the National Cancer Institute. Talk with your health care team if you are interested in adding a complementary method of treatment. Let them know about supplements and herbs you want to try. Some types of complementary treatments can interfere with treatments prescribed by your provider.

Stem Cell Therapy

While there is a great deal of anecdotal evidence that stem cell therapy has beneficial applications there is little real medical evidence and many researchers, physicians and regulators still view much of stem cell therapy as modern day quackery.

I know you can find many people who have had stem cell therapy and swear by it but to the medical community that is still anecdotal evidence unsupported by clinical studies and therefore “iffy” or even dangerous.  It is important to note that even among physicians who are among the most trusted members of our society, there are those whose greed supersedes professional ethics.  These charlatans prey on a trusting public and can do more harm than good.  An example is the FDA and DEA crackdown on hundreds of physicians who indiscriminately prescribe controlled substances to anyone who wants them.  The best advice always is, “Buyer beware!”

In researching the subject for this blog I was struck again and again by conflicting opinions which convinced me that it is nearly impossible for a lay person like me to sort out the science from the pseudo-science and offer sound advice. I am simply not qualified to do so which means the burden falls back on the reader and depends on the illness in question, its severity and what has been done to treat it in the past.

I can only suggest this.  There are claims being made by clinics all over the world about successful stem cell therapies covering everything from bad knees to multiple sclerosis.  If you are seeking such therapy start out by talking to your primary care physician and getting his/her advice.  If still not satisfied look for a respected specialist in the field at a major medical center and finally if you still need more information, look up a highly respected medical school that also does research into stem cell therapy and inquire with them about your concerns.  I would avoid calling the stem cell clinics that sell the treatment because there is no way you will get an objective response from them.

In December of 2012 I published a blog on the issue of stem cell therapy titled Stem Cell Therapy – Some Truth, lots of Snake Oil. https://bobsnewheart.wordpress.com/2012/12/03/stem-cell-therapy-some-truth-lots-of-snake-oil/

I spent a considerable amount of time researching the issue before posting and little has changed since then.  If Stem Cell therapy is a consideration for you please read it and click on the many links I have provided.  They may not give you the answers you want but they will give you objective and accurate information.  Ultimately the decision is yours and yours alone. The U.S. Food and Drug Administration (FDA) is still struggling with the stem cell issue and until they can sort it all out I would proceed with great caution.

As you can gather, there’s a lot of confusion and misleading information about stem cell therapy because research is really in its infancy.  The International Society for Stem Cell Research (ISSCR) has a lot of information about stem cells and lists 10 things you should know about the subject on this link http://www.closerlookatstemcells.org/Top_10_Stem_Cell_Treatment_Facts.html

Here is just one of the ten.

4.  Just because people say stem cells helped them doesn’t mean they did.

There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: the ‘placebo effect’, accompanying treatments, and natural fluctuations of the disease or condition.

The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement. Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells. Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments.

These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy. Be wary of clinics that measure or advertise their results primarily through patient testimonials.

ISSCR offers a great deal more information on stem cell research and therapy on their home site at http://www.closerlookatstemcells.org/

Finally, Forbes magazine, admittedly very conservative in its approach to almost anything, ran this story about stem cells here’s an excerpt and a link. http://www.forbes.com/sites/gerganakoleva/2012/02/19/stem-cells-fda-and-the-edge-of-science-three-expert-viewpoints/

Forbes excerpt

“The question for us as a society is when something done at the edge of clinical care becomes something we want to study,” Scott observed. “My feeling is that in many cases clinics are scrambling to get approval, but don’t have the gravitas that the clinical literature provides that would give comfort to a regulatory agency or even an advisory board to say ‘go ahead and do it.’ So until we have a better idea of what the adverse effects would be, these things are moving too quickly.”

Other Pain Treatment Options

Biofeedback is a method that uses the mind to help with pain. Breathing exercises, relaxation techniques, yoga, tai chi, qigong, visualization, meditation or guided imagery exercises may also be effective. Sometimes, talking with friends, laughing or listening to music can offer a helpful distraction from pain.

For severe pain, a technique called a nerve block is sometimes considered. This procedure may involve injecting a substance directly into or around a nerve or around the spinal cord. These procedures block damaged nerves from sending pain signals to the brain so that the pain will not be felt. Nerve blocks may work to control pain for people who have advanced cancer or very painful nerve conditions. However, there can be serious complications associated with these procedures.

Talk with your health care provider about the benefits and risks before any treatment to decide what is best for your situation. Every survivor responds differently to pain management strategies. Open communication with your health care team can help you decide together what will work best to manage your pain.

Conclusion

After considerable research Bob’s Newheart has come to the conclusion that while there are forces at play that would deny patients relief from chronic pain, there is also help available.  Unfortunately the medical profession is more a part of the problem than the solution despite its protestations to the contrary.  For any doctor to deny relief to a patient with legitimate pain is to us a violation of their oath. 

Chronic pain is a medical reality that affects not only the body but the emotional stability of the patient as well.  Any patient who says, “I cannot go on living like this,” and is denied relief for fear of being investigated is in desperate straits.  When my pain specialist said to me, “I can’t give you narcotics, see your primary,” he was not only lying he was telling me he didn’t’ care about my pain.

Narcotics or controlled substances aren’t always the proper treatment but neither is denying these drugs to people who are in legitimate pain. 

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient.  He is the founder of Facebook’s 3000 plus member Organ Transplant Initiative (OTI) and the author of most of these Bob’s Newheart Blogs. 

All that’s required to join OTI is that you support our mission and follow the rules for the group.  You can read about both in the “About” section on the right side of the OTI group page.

 

 

 

Why Some Docs Won’t Prescribe Narcotics no Matter How Bad the Pain


Having Trouble Getting Pain Killers?  Here’s why.

Some Florida physicians are mighty gun shy  about prescribing narcotic painkillers for their patients and many of us who need them are being made to suffer unnecessarily.lots ofdrugs

I have osteoarthritis in my neck, back and a few other places.  Osteoarthritis is very painful.  I also get severe muscle spasms in my neck and shoulders.  The pain from the arthritis and the spasms is so intense it is beyond description.  It is get on the floor, pound your fists and scream pain…the kind that makes you cry and beg for relief, but for a lot of us here in Florida there is no relief.  Some physicians will go to almost any extreme to avoid prescribing drugs like Oxycontin, Oxycodone, Dilaudid  or almost any other controlled substance.

The drugs I mentioned are very powerful and addictive narcotics. Oxycontin is a time release drug, Oxycodone (the same drug) acts immediately and Dilaudid acts immediately and is said to be more powerful than morphine.  They are heavily controlled substances and should be.  They are dangerous drugs.

Florida used to be the place that prescribed those drugs for the rest of the nation.  In 2010, 90 of the top 100 oxycodone-purchasing doctors in the United States resided in Florida but then the Drug Enforcement Administration (DEA) cracked down — hard and many of the major clinics overreacted.  (read the full story on Florida’s narcotics prescription problem here http://articles.orlandosentinel.com/2013-04-06/news/os-prescription-drug-epidemic-2013-20130406_1_prescription-drugs-central-florida-certain-drugs )

Deaths attributed to opioid analgesics now exceed those involving heroin. By 2010, enough opioid analgesics were sold to medicate every American adult with a typical dose of 5 mg of hydrocodone every 4 hours for 1 month – See more at: http://www.pharmacytimes.com/news/Is-Floridas-Oxycodone-Problem-Under-Control#sthash.1sMZdorU.dpuf

It wasn’t only physician who were a problem, the monster drugstore chain Walgreens was involved, too.  http://tinyurl.com/l2t7ohc   The U.S. DEA said, corporate officials at Walgreens implemented bonus programs that incentivized pharmacists to sell oxycodone and ignore “red flags” that customers were abusing the popular painkiller, which leads us to our current dilemma.walgreens

Chances are if you are post-surgical, need a root canal, have cancer or a broken leg your physician will prescribe whatever you need.  But if you have chronic back pain, arthritis, muscle spasms or any other kind of pain that is not easily verifiable you are likely going to have trouble getting narcotics in some clinics.

I should point out here that I despise narcotics.  I am, since 1982, a recovering alcoholic.  I have to be extremely careful about addictive substances but I have tried virtually everything that modern medicine has to offer and narcotics seem to be the only way to get some relief from the absolutely debilitating pain I suffer on a daily basis.  My doctors, specialists in my particular ills have so far refused to provide me with any pain relief other than various forms of aspirin or Tylenol.  They are always careful to add that I can get pain relief from my “Primary.”

In fairness I must agree with their assessment that narcotics only hide the pain, they do not cure it.  I agree that physicians should look for the root cause and attempt to treat the pain by other means including physical therapy but in the time between the diagnosis and the ultimate treatment narcotics can provide relief.  No one should have to live with almost unbearable pain.  It is in that period between diagnosis and cure or treatment that narcotics have a legitimate place.  And…sometimes, however rare that may be, sometimes narcotics are the only answer to chronic pain.  Physicians have the training and the diagnostic tools to determine who has real pain and who is seeking to feed a habit or to sell prescription drugs illegally.

When a person has surgery or breaks a leg it is quite obvious that pain killers are needed and they are most often given…that is not the problem.  The problem lies with those who suffer from chronic pain…pain that cannot always be seen on an x-ray, CT scan or MRI.  Their pain is just as real as that suffered by someone with broken bones but getting relief from the discomfort is far more difficult because of the irresponsible behavior of a very small number of physicians and companies like Walgreens.

So what do you do if you are in pain and need a painkiller?  Well, you can get relief but it will take some legwork and it won’t be easy.

In order to get a prescription for a pain killer now in Florida you first have to convince a physician you need it and that is not easy.  Pain is one of those symptoms that is hard to measure.  Most physicians won’t prescribe narcotics for new patients…they’d like to get to know you first.  The real tragedy, though is that if you go to a major medical center like Mayo and need a powerful painkiller they will likely tell you to get it from your primary care physician.pain  Mayo is mostly a specialty clinic and while they have a few primary care physicians the number is small.

My primary care physician is not a Mayo Doc so when I tell him “Mayo says you should prescribe the narcotic,” the primary care doc says, “Why me?  They have all the fancy diagnostic tools, they came up with the diagnosis and they have all of your medical records, they should also prescribe the drugs.”

And to me that makes perfectly good sense.  Why should the Primary care doc put his license on the line?  Fortunately my primary, a first class professional who I have known for a long time has agreed to take care of me but the way the law is written, monitored and enforced makes him very nervous.

First the physician has to see and examine you to determine if the claim is legitimate.  Then he/she has to write the prescription.  They cannot call or fax the prescription in to a pharmacy as they can with most other drugs. When narcotics are involved the patient must hand deliver the script to the pharmacist and there are no automatic refills.  When you run out and need more you have to call your physician again for an appointment, have him or her write another prescription and again take it to the pharmacy.prescription

I understand completely why the law has to be so tough.  People were making millions of dollars on prescription drugs and thousands, maybe millions of people were becoming addicts as a result.  But for those of us who only want pain relief it’s a different story.  Somehow there should be an accommodation for patients who really are in pain…and especially those of us who are not quite as agile as others and sometimes have to depend on others to get us to the doctor and to the pharmacy.

This is a very important issue and should be dealt with in a reasonable way but when the DEA is breathing down your neck and lawsuits are possible the medical profession retreats and patient care becomes a secondary issue.  That’s not right.

I want to pause here for a moment to point out that Mayo has saved my life more than once.  It was at Mayo in Jacksonville that I got a heart transplant in 2007 and my care there is beyond reproach.  I have nothing but respect for the Mayo team and the manner in which they practice medicine but being as it is the place where I get 99.9% of my care they become part of this story.  When I have had surgery there or was seen for an injury there was no hesitation in providing me with the narcotics I needed to aid in the healing process.   It is when you have pain like mine that you hear the words, “See your primary (meaning see your primary care physician).”

Recently in a clinic visit I asked a physician who was intimately familiar with my condition if he could write me a prescription for a narcotic painkiller being as nothing else was working and it would be some time before I could get into physical therapy.  His terse response as he walked out of the room was, “I can’t do that, see your primary.”  The fact is he can do that…he didn’t want to.

Sometimes the arrogance of physicians is beyond belief.   They deny you pain relief and schedule physical therapy three weeks later.  What do they expect will happen in those three weeks?  Don’t they understand or even care that it will be three weeks of sanity challenging pain?  My sense is they don’t care about your pain — they are far more worried about protecting their licenses.

If the Hippocratic oath really says, “First do no harm,” the physician who denies relief to someone in real provable pain is violating his/her oath because by denying medication, they are doing great bodily and psychological harm.  Shame on them.  As far as I know there is no law, rule or restriction that requires narcotics prescriptions be written by primary care physicians only.  “See your primary” is code for, “The best way to stay out of trouble is to avoid writing any prescriptions for narcotics by passing the buck to primary care physicians in private practice.”

Physicians should have the guts to say, “My patient is in pain and I’m going to prescribe something to help him.” My experience, though, is that many of them would rather pass the buck to another physician who is also afraid of losing his or her license.

Have you had an experience like this?  If so I’d like to hear from you. I fully intend to write more on this issue and will do so not only from my experience but will also draw on what I’m hearing from other patients like myself who have provable, medically verifiable pain and are candidates for narcotic pain relief but are being denied treatment.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Does An Organ Transplant also Transplant Donor Memories?


I have researched and published several blogs on  cellular memory and am doing it again because in the five years I have been writing the Bob’s Newheart column it is clearly the most popular topic.   It has had thousands and thousands of hits from all over the world.

Personally I am a cellular memory skeptic  in that I had a heart transplant in 2007 and developed no new habits or tastes.  I am pretty much who I always was.  Having said that I do not discount the experience of others who feel their lives, habits and even personalities have changed and in some cases the changes, they say, are dramatic.   Who am I to say that their experiences are not real?

Because of the popularity of the subject matter I embarked on another search to see if there was any new information since my last blog on the issue a couple of years ago.  I found this piece to be so complete I decided that rather than paraphrase or lift quotes from it I would just post the entire document.  Published originally by the Skeptics Dictionary, it covers just about every aspect of this most interesting phenomenon.  The Skeptic’s Dictionary calls itself “A Collection of strange beliefs, amusing deceptions and dangerous delusions.” and you can find it here http://www.skepdic.com/cellular.html

Cellular Memory

The Skeptic’s Dictionary

“The idea that transplanting organs transfers the coding of life experiences is unimaginable.”  –Dr. John Schroeder,  Stanford Medical Center

Cellular memory is the speculative notion that human body cells contain clues to our personalities, tastes, and histories, independently of either genetic codes or brain cells. The magical thinking of our ancestors may account for the first beliefs in something like cellular memory. Eating the heart of a courageous enemy killed in battle would give one strength. The practice of eating various animal organs associated with different virtues such as longevity or sexual prowess* is one of the more common forms of magical thinking among our earliest ancestors. Even today, some people think that eating brains will make them smarter.

The idea of cellular memory has been used in several films. For example, Les Mains d’Orlac (1920) by Maurice Renard  (1875-1939) is built around a story of a concert pianist who loses his hands in an accident and is given the hands of a murderer in a transplant operation. The pianist then develops an urge to kill. Several variations of Renard’s story have made it into film, including Orlacs Hände, a 1924 silent Austrian film, Mad Love (1935), Les Mains D’Orlac (1960), and Hands of a Stranger (1962). A similar story is told by Pierre Boileau and Thomas Narcejac (authors of Vertigo) in et mon tout est un homme (1965), which was made into the film Body Parts in 1991. A prison psychiatrist loses an arm in an accident and is given the arm of an executed psycho-killer. The arm then develops a mind of its own. In the film Brian’s Song, the 26-year old Brian Piccolo (played by James Caan) is dying of cancer when Gayle Sayers (played by Billy Dee Williams), his friend and Chicago Bears teammate, visits him in the hospital. Piccolo had been given a transfusion and he asks Sayers if he had donated any blood. When Sayers says yes, Piccolo remarks that that explains his craving for chitlins.

In real life, Claire Sylvia, a heart-lung transplant recipient, explained her sudden craving for beer by noting that her donor was an 18-year-old male who died in a motorcycle accident. She’s even written a book about it (A Change of Heart), which was made into a movie for television in 2002 called “Heart of a Stranger,” starring Jane Seymour.

Dr. Larry Dossey doesn’t accept the cellular memory explanation for Claire Sylvia’s sudden craving for beer. He thinks that the most likely explanation “is that the consciousness of the donor had fundamentally united with the consciousness of the recipient enabling the recipient to gain information from the donor.” Perhaps, he mused, organ recipients enter into a realm of consciousness where information about another person can be accessed through the Universal Mind.* Perhaps, but is there a simpler explanation?

James Van Praagh, on the other hand, is quoted by Claire Sylvia as saying: “Donated organs often come from young people who were killed in car or motorcycle accidents, and who died quickly. Because their spirits often feel they haven’t completed their time on earth, they sometimes attach themselves to another person. There may be things that your donor hadn’t completed in the physical world, which his spirit still wanted to experience.”* James claims to get his information from the spirit world. Unfortunately, we have no way of validating his claims.

Paul Pearsall, Ph.D., a psychologist and author of The Pleasure Prescription and The Heart’s Code,  goes much further in his speculations than that certain cravings are passed from donor to recipient in organ transplants. Pearsall claims that “the heart has a coded subtle knowledge connecting us to everything and everyone around us. That aggregate knowledge is our spirit and soul. . . .The heart is a sentient, thinking, feeling, communicating organ.” He claims “donated cells remained energetically and nonlocally connected with their donor.” How he knows this is anybody’s guess.

Sylvia Browne teaches a course for alternative education programs Healing Your Body, Mind & Soul. In one two-hour session Ms. Browne will teach anyone “how to directly access the genetic code within each cell, manipulate that code and reprogram the body to a state of normalcy.” Anyone with a little bit of knowledge of genetics would recognize that these claims are preposterous, yet when the course was offered in Sacramento, it was sold out.

L. Ron Hubbard speculated in Dianetics that cellular memory might explain how engrams work.

Dr. Candace Pert, a professor in the department of physiology and biophysics at Georgetown University, believes “the mind is not just in the brain, but also exists throughout the body.”  Dr. Pert is an expert in peptide pharmacology. “The mind and body communicate with each other through chemicals known as peptides,” she claims. “These peptides are found in the brain as well as in the stomach, muscles and all of our major organs. I believe that memory can be accessed anywhere in the peptide/receptor network. For instance, a memory associated with food may be linked to the pancreas or liver, and such associations can be transplanted from one person to another.”* The evidence for these claims has yet to be produced and Pert’s notions have not found favor with neuroscientists who study the nature of memory. I especially await the evidence for the holographic mind that exists throughout the body. How does she know that it doesn’t extend beyond the body? Perhaps it goes all the way out to Larry Dossey’s Universal Mind. It’s not at all clear what Pert means by ‘mind’. In any case, Dr. Pert doesn’t explain why we don’t seem to be affected by the memories of the animals we eat. Perhaps their peptides get destroyed by cooking.

Attilio D’Alberto has found that he can easily reconcile traditional Chinese medicine (TCM), cellular memory, and quantum physics in one holistic metaphysical hodgepodge. You’ve got your yin organs and your yang organs, your E=mc2, your sympathetic magic (each organ has an associated emotion, spirit, planet, etc.), your quantum level of subatomic particles and frozen energy fields with their different frequencies. “If a heart is transplanted, the memory at the cellular level and at the spiritual level, the Shen, will be moved with the donated organ.” However, it seems clear that he is just guessing.

Gary Schwartz claims that he has 70 cases where he believes transplant recipients have inherited the traits of their donors. He believes this because the “stories are compelling and consistent.”* He also believes he understands the mechanism by which cellular memory works:

When the organ is placed in the recipient, the information and energy stored in the organ is passed on to the recipient. The theory applies to any organ that has cells that are interconnected. They could be kidneys, liver and even muscles.

How he knows this is a mystery. If it is true that donors pass on personality traits and personal tastes, then it might be unwise for people to get organ transplants from other species, such as the baboon. Again, if all cells are carrying information that can be passed on in transplant, why wouldn’t this information be transferred when we eat fruits, vegetables, or any other living thing. Shouldn’t we be releasing into our bloodstream the magic of a living thing’s history with each bite we take? Schwartz calls his belief a “theory,” but it is not a theory in the sense that scientists use the term.* It would be more accurate to call it an untestable speculative model.

An organ transplant is a life-altering experience, literally. In many cases, it might well be compared to the near-death experience since many transplants are done only if death is imminent. It should not be surprising to find that many transplant recipients change significantly. Some of these changes might easily be interpreted as being consistent with the donor’s likes and dislikes or behaviors. Recipients would want to know about their donor and might consciously or unconsciously be influenced by stories about the person who now “lives inside them.”

Collecting stories to validate a hypothesis is a risky business. Stories of transplant recipients that don’t seem to exhibit memories from their donor don’t prove that they aren’t there but those stories are selected out anyway. Stories that do seem to exhibit donor memories don’t prove cellular memory but collecting a bunch of them could lead one to see a pattern that isn’t really there. Collecting such stories may simply prove that the researcher is good at confirming his or her bias. The validation process becomes more complicated when one considers that many organ recipients will give in to magical thinking and “feel” the presence of the deceased donor within them. The recipient’s subjective validation may be driven by a desire to prove the belief or to please the donor’s family, the doctor, or a medical attendant who may encourage the belief. Furthermore, now that the idea of cellular memory is being promoted in books and on television (the Discovery Health Channel, for example), there will be a problem of making sure that stories aren’t contaminated.

Science should be moving us forward, bringing about a better understanding of how phenomena work. Scientists like Gary Schwartz and Paul Pearsall introduce mysticism and magical thinking into the mix, which is very attractive to many New Age healers because it supports their spiritual leanings. However, such thinking does not advance science; it takes it back to an earlier time, a time when the world was dominated by magical powers. It dresses that world in scientific-sounding jargon about energies and quantum physics, but it does little to advance our understanding of anything and it will continue to fail to convince the scientific community at large, which has a higher standard of evidence, of its speculations.

Here is what Jeff Punch, M.D., has to say about cellular memory:

There are several possible logical explanations for why people might assume characteristics of their donors: Side effects of transplant medications may make people feel weird and different from before the transplant. For example, prednisone makes people hungry:

The recipient of an organ transplant develops a love of pastry and finds out the person that donated their organ loved pastry as well. They think there is a connection, but really it is just the prednisone making their body crave sweets.

It could also be pure coincidence:

The patient watches a TV show while recovering from a transplant that shows older adults rollerblading and decides that it looks like fun, but doesn’t make a conscious decision to do anything about it because they are still recovering from the transplant. Months later they are shopping and they see rollerblades and decide to give it a try since it was something they were incapable of doing for heath reasons before the transplant. They like it and get good at it. Later they find out that the donor was a young person that liked to rollerblade. It is easy to understand how the patient and family might believe that the new organ had something to do with Mom’s new-found love of rollerblading. In actuality, the only thing the new organ gave her was the health to try rollerblades. The idea came from a TV show she forgot she ever saw.

A transplant is a profound experience and the human mind is very suggestible. Medically speaking, there is no evidence that these reports are anything more than fantasy.

Even so, the stories are intriguing and may lead to some serious scientific investigation at some time in the future.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Foreigners are Getting American Organs…Should That Be Allowed?


From time to time we hear of a non-U.S. citizen getting an organ transplant at an American medical center having received the organ from the American donor pool.  Is that proper?  There’s more of it going on than you may suspect and transplant centers don’t talk about it much.

While I am the first to admit that my research of this topic is inadequate it still raises legitimate questions.  Why do we allow non-U.S. citizens  to get transplants here?  Shouldn’t American organs go to Americans?  Should donors be able to designate that they only want their organs to go to fellow citizens?

No one has made much of a fuss about our organs going to citizens of other countries until the Los Angeles Times  investigative report in 2008 uncovered the story of four Japanese gangsters who got liver transplants at the University of California, Los Angeles Medical Center.  That story put a burr under a lot of American Saddles but it still took the United Network For Organ Sharing (UNOS), which often moves at breakneck glacier speed, four years to decide to do something about it.  Just this year they decided that transplants involving recipients who are not U.S. citizens or residents will get closer scrutiny according to American Medical news” http://www.ama-assn.org/amednews/2012/07/16/prse0718.htm

“Under the policy adopted by the UNOS board of directors in late June, any transplant involving a recipient who is not a U.S. citizen or resident can be reviewed by the Organ Procurement and Transplantation Network  (OPTN).

Transplant centers will have to provide data to the OPTN. That information will include a recipient’s country of origin, the reason for seeking transplantation in the U.S. and how the procedure is being financed. Data on transplantation by citizenship status will be publicly reported.

Centers will be barred from entering contracts with foreign agencies or governments to provide transplantation services. Transplant centers must abide by OPTN/UNOS rules in order to be paid by Medicare.”

I don’t know about you, readers, but this report doesn’t really tell me what a review by OPTN could result in.  Like…could they deny the transplant?

Later in this post you will see more specifics but in the decade from 2000 through 2010 685 non-U.S. citizens got organ transplants here with organs coming from American donors.  What is bothersome to me is that when we sign up to be donors I think we do so assuming that our organs will go to fellow citizens.  That apparently is not always the case.

When you consider that about 20 U.S. Citizens die every day because there are not enough organs is it right that a rich foreigner (the great majority pay cash) can come here and take an organ that might otherwise have gone to one of us?  Why is there a rule that American Transplant Centers can list foreigners but they can make up no more than 5% of any center’s list?  And — is it true that some organs are given to illegal aliens?  We’ll attempt to answer those questions and more in this post.

Before we more completely address these important questions it is important to frame the issue of organ allocation and transplantation in the United States.  As much as we dislike the idea the fact is that we must ration human organs.  The gap between available organs and those who need them is so incredibly wide someone has to decide who does and doesn’t get them.

The most burning of questions in organ transplantation is this one; Who on the waiting lists should get transplants first: patients in the greatest need or those most likely to benefit?  Example.  If a choice has to be made between a 72 year old man has been diagnosed as almost immediately terminal unless he gets an heart transplant and a sick but much healthier 35 year old mother of three; who should get the heart?  It could be logically argued that the mother should get it because while not as sick as the man she is more likely to live much, much longer and therefore benefit the most.

As of this writing there are 116,835 candidates on the U.S. transplant waiting list.  From January through October of 2012 there were only 23,363 transplants done with the organs coming from 11,659 people.  It is obvious with virtually no study of the numbers that the gap between available organs and those who need them is monstrous.  And…think about this.  In those ten months from January through October of all the people who died in this country only 11,659 of them were acceptable donors (acceptable meaning among registered donors this number had organs healthy enough to be transplanted).

Determining who gets an available organ is not easy and the process is said to be “Blind” meaning patient conditions, age and other medical factors are known but not names or social status.  It is important to understand, too, that there are over 150 transplant centers in the United States (complete list here http://tinyurl.com/78qfesx) and each is allowed to decide which of their patients is placed on the national listing. Where there are general guidelines on who can be listed, there is no uniformity which has resulted in each transplant center developing their own criteria for adding patients to the ever growing number.

So how do you get on the transplant list anyway?  Well, to start you have to have a Doctor who thinks you are sick enough to be referred to a transplant center, but there are many factors involved one of which is what bioethicist Art Caplan calls the “Wallet biopsy.”  You have to prove that you can pay not only for the procedure but the follow-up care and the anti-rejection drugs you must take for the rest of your life.  Those drugs can be very expensive…in excess of $1,000 a month..

Even if patients have enough money to qualify for a transplant, the transplant center must also deem them good candidates psychologically and socially and the criteria vary widely.  Among the factors that transplant centers weigh as contraindications are not having a spouse or relative or close friend as a caregiver, having suffered a recent death or loss of someone close to you, having a history of criminal behavior or mental illness like schizophrenia or depression, a history of alcoholism or drug dependency, having attempted suicide, having a personality disorder and mental retardation.

With all those qualifications it is the first one, the ability to pay, that may determine your success in getting listed and then getting an organ.  So when foreigners come to the U.S. with a boatload of cash it is possible that some transplant centers will make every effort to accommodate their needs including manipulating numbers so that they stay within the 5% restriction.

But…let’s look at the 5%.  The number only indicates a limit on foreign transplants it does not say that 5% of all transplants go to foreigners and with the New UNOS rules the number of foreign transplants could diminish.  My research on this subject revealed that from 2000 through 2010, 685 non-citizen, non-residents (aka foreign nationals) were given deceased donor kidney transplants in the US.  http://livingdonorsarepeopletoo.com/kidneys-given-to-non-us-citizens-non-residents-2000-2010/

Now what about that question on illegal immigrants getting tax paid organ transplants in the U.S.?  Research indicates that while it has happened it is rare and in the case of a 2012 kidney transplant at Loyola University in Chicago the transplant was funded by Loyola.  http://articles.chicagotribune.com/2012-12-09/news/ct-met-illegal-immigrant-kidney-transplant-20121209_1_illegal-immigrant-kidney-transplant-liver-transplant.  Now, one could argue that Loyola money is private money but at the same time the school certainly receives tax dollars for a myriad of uses so the use of tax dollars, however tangential, is certainly possible.  More importantly, though, it is clear that an American donor’s organ was given to an illegal alien meaning that an American Citizen did not get it.  To me…that’s just not right.

I find it disgraceful that any American citizen should be denied an organ transplant for any reason but to be denied an organ because it went to someone from another country just doesn’t seem right.  I did a considerable amount of “googleing” to find a satisfactory explanation for the practice and came up empty handed.  Having been on a list and knowing of the shortage scared me.  Had known that someone from another country might get an American organ before I did, would have terrified and enraged me.  I just don’t think its right.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

The Ultimate Hypocrisy — Government Profiting on Killer Tobacco


Bob’s Newheart and our Facebook group Organ Transplant Initiative (OTI) support and encourage organ donation and potential biological and mechanical alternatives we also believe that the best solution for the organ shortage is to reduce the demand.

Tobacco products along with alcohol are two of the greatest contributors to organ damage and the need for transplants.  If we could get people to stop using those substances the demand for transplants would diminish significantly and that could mean that the supply of organs just might catch up to the reduced demand.

The affect of tobacco products on human organs is devastating.  There is almost no part of our bodies that the thousands of chemicals in tobacco and cigarette smoke can’t invade and ultimately destroy.  If you smoke, it likely will kill you!  If you quit your body will begin to recover and the cancers and other diseases will have to find a different host.

Our governments (city, county, state and federal) all tax tobacco often with the intention of using the revenue to finance stop smoking campaigns and most often some of the money collected is used for that purpose but not always.  As is usually the case when there is a pot of money available, lots of good causes want some of it, sometimes not so good causes get it so less than 3% of tobacco tax dollars go into anti smoking or smoking cessation programs.  Furthermore, settlements in and out of court in the 1990s mean that the tobacco industry is paying states nearly $250 billion over 25 years. Under the agreement, those payments to states will continue flowing even beyond 25 years as long as the tobacco industry is healthy. But the payments would phase out as cigarette company profits decline and would ultimately disappear if people stop smoking.  So while government must try to get people to quit smoking, they really don’t want to try too hard.

So, having given you some critical information about smoking  I’m hoping you will do two things,  1) if you smoke…quit.  2) tell your elected officials to get really serious about helping people who use tobacco products to quit using them, I submit this post for your consideration and comment.

There’s an adage that goes, ”If you borrow a hundred dollars from the bank, you owe the bank.  If you borrow a million you own the bank.”  That simply means the bank can’t be too hard on you if they want to get their money back.  That’s the situation governments find themselves in with tobacco.  In a strange twist, tobacco companies own the government.  Let me explain.

Tobacco Kills.  Cigarettes alone kill nearly a half million Americans every year.  That’s just a cold hard fact.  You probably don’t need reminding but I will anyway via the enters for Disease Control in Atlanta, Georgia.  They list these facts: http://tinyurl.com/lblldw

  • The adverse health effects from cigarette smoking account for an estimated 443,000 deaths, or nearly one of every five deaths, each year in the United States.
  • More deaths are caused each year by tobacco use than by all deaths from human immunodeficiency virus (HIV), illegal drug use, alcohol use, motor vehicle injuries, suicides, and murders combined.
  • Smoking causes an estimated 90% of all lung cancer deaths in men and 80% of all lung cancer deaths in women.
  • An estimated 90% of all deaths from chronic obstructive lung disease are caused by smoking.

Smoking and Increased Health Risks

Compared with nonsmokers, smoking is estimated to increase the risk of—

  • coronary heart disease by 2 to 4 times,
  • stroke by 2 to 4 times,
  • men developing lung cancer by 23 times,
  • women developing lung cancer by 13 times, and
  • dying from chronic obstructive lung diseases (such as chronic bronchitis and emphysema) by 12 to 13 times.

If trends continue, one billion people will die from tobacco use and exposure during the 21st century – one person every six seconds. Globally, tobacco-related deaths have nearly tripled in the past decade, and tobacco is responsible for more than 15% of all male deaths and 7% of female deaths. Tobacco is also a risk factor for the four leading noncommunicable diseases (NCDs) – cancer, heart disease, diabetes and chronic respiratory diseases – which account for more than 63% of global deaths according to the World Health Organization.

Tobacco use is the number one killer in China, causing 1.2 million deaths annually; this is expected to rise to 3.5 million deaths annually by the year 2030. Tobacco is also responsible for the greatest proportion of male deaths in Turkey (38%) and Kazakhstan (35%), and the greatest proportion of female deaths in the Maldives (25%) and the United States (23%).

Uniquely among cancer-causing agents, however, tobacco is a man-made problem that is completely preventable through proven public policies. Effective measures include tobacco taxes, advertising bans, smoke-free public places, mass media campaigns and effective health warnings. These cost-effective policies are among those included in the World Health Organization’s Framework Convention on Tobacco Control (WHO FCTC), a global treaty endorsed by more than 174 countries, and recommended by the World Health Organization in its MPOWER policy package.  http://tinyurl.com/bor7897

Our government knows all of this.  All of our elected officials know this and they all publicly support anti-smoking efforts.  They go to great extremes to condemn the use of tobacco while explaining the public health consequences.   Almost no one is pro smoking and yet everyone is pro smoking because we have come to depend on the billions of tax dollars generated by the sale of tobacco products.  It should be pointed out that at least the U.S,. Government no longer subsidizes tobacco farmers.  That program ended several years ago.

As usual the poor are hit the hardest by the addictive nature of tobacco.  In a study conducted on behalf of the New York State Department of Health, it revealed that low-income smokers (those in households making under $30,000), spent an average of 23.6% of their annual household income on cigarettes, compared to 2.2% for smokers in households making over $60,000.

Taxes on tobacco products total billions of dollars a year.  An example — in New York state the federal tax on a package of 20 cigarettes is $1.01, the state tax is $4.35. New York City adds a local tax of $1.50 to the state levy. That brings the combined tax rate on a package of 20 cigarettes in New York City to $6.36.  Tobacco manufacturers add their profit on top of that so depending on where you buy your cigarettes in the city you could pay as much as $12 a pack…twelve dollars for a pack of cigarettes.  By comparison, when I started smoking in 1954 you could buy a pack of “Wings” cigarettes for Ten cents. Major brands like Lucky Strikes or Camels were a quarter (quit smoking in 1991).

Tobacco Industry Profits Greater Than Ever
According to The Tobacco Atlas, estimates of revenues from the global tobacco industry likely approach a half trillion U.S. dollars annually. In 2010, the combined profits of the six leading tobacco companies was U.S. $35.1 billion, equal to the combined profits of Coca-Cola, Microsoft, and McDonald’s in the same year. If Big Tobacco were a country, it would have a gross domestic product (GDP) of countries like Poland, Saudi Arabia, Sweden and Venezuela.

In the meantime, tobacco companies are fighting laws with every weapon in their arsenal because just as their product kills people, restrictive smoking laws can kill the industry, a killing some say, is necessary and justified homicide.

As countries around the world ramp up their campaigns against smoking with tough restrictions on tobacco advertising, the industry is fighting back by invoking international trade agreements to thwart the most stringent rules.

A key battlefront is Australia, which is trying to repel a legal assault on its groundbreaking law requiring cigarettes to be sold in plain packs without distinctive brand logos or colors. Contesting the law, which takes effect Dec. 1, are the top multinational cigarette makers and three countries — Ukraine, Honduras and Dominican Republic — whose legal fees are being paid by the industry.  http://tinyurl.com/chypao4

Tobacco use has diminished considerably in most of the developed countries but not all of them.  The leafy crop is gaining new popularity among U.S. farmers. Cheaper U.S. tobacco has become competitive as an export, and China, Russia and Mexico, where cigarette sales continue to grow, are eager to buy. Since 2005, U.S. tobacco acreage has risen 20 percent. Fields are now filled with it in places like southern Illinois, which hasn’t grown any substantial amounts since the end of World War I.  http://www.freerepublic.com/focus/f-news/1899911/posts

While the price of cigarettes has continuously increased since 1965, the percentage of that price going towards taxes is now half of what it was then. ]While tobacco companies complain about the $1.01 cigarette tax, Phillip Morris, Reynolds American, and Lorillard have all increased their prices by almost $1.00 per pack on their own. Phillip Morris currently lists all taxes, including federal, state, local, and sales taxes, as 56.6% of the total cost of a pack of cigarettes.

One of the reasons for the support of increased cigarette taxes among public health officials is that many studies show that this leads to a decrease in smoking rates. The relationship between smoking rates and cigarette taxes is in fact very elastic; the greater the amount of the tax increase, the greater the proportion of smokers who stop smoking. This is especially prevalent amongst teenagers. For every ten percent increase in the price of a pack of cigarettes, youth smoking rates overall drop about seven percent. This rate is also true amongst minorities and low income population smokers.  The rates of calls to quitting hot-lines are directly related to cigarette tax hikes. When Wisconsin raised its state cigarette tax to $1.00 per pack, the hot-line received a record of 20,000 calls in a two month time period versus its typical 9,000 calls annually.

According to the New York Times taxes are not the only government revenue from cigarettes. Settlements in the late 1990s to end state lawsuits against tobacco companies mean that the cigarette industry is paying states nearly $250 billion over 25 years. Under the agreement, those payments to states will continue flowing even beyond 25 years as long as the tobacco industry is healthy. But the payments would phase out as cigarette company profits decline and would ultimately disappear if people stop smoking.

So the government has become a financial stakeholder in smoking, some would argue, even as public health officials warn people about its deadly consequences. Smoking declines as cigarette taxes increase, but a core group of smokers hang on to the habit.  http://www.nytimes.com/2008/08/31/weekinreview/31saul.html

Will the government or governments ever really crack down on smoking?  Doubtful, there is too much money in it for them so the tobacco companies and the politicians who seek to eradicate them have come to be bedfellows.  What many politicians fail to see is the savings that could be had if people didn’t smoke.  According to the CDC again, “Smoking is also a major contributor to many chronic diseases that are driving up the nation’s health care costs. Each year, diseases caused by cigarette smoking result in $96 billion in health care costs, much of which is paid by taxpayers through publicly-funded health programs.” http://www.cdc.gov/features/TobaccoControlData/ but the savings go beyond that when you consider the costs to employers and employees in higher premiums and lost work time due to tobacco caused illnesses.

If we truly wanted to wipe out smoking, taxes could be raised even higher than they are and the dollars generated could go a long way toward helping to solve our budget problems.  Unfortunately if everyone quit smoking, the tax revenue would disappear, too and therein lies the dilemma, but it does prove that you can be both for and against something at the same time.

Transplants — With An Emphasis on Recovery (by organ)


The organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  The entire process of organ transplantation is traumatic, from the time you are diagnosed  through the evaluation process, your time on the waiting list and finally recovery from the surgery.   If you are told you are going to need an organ transplant you are also being told that your life is about to change dramatically.

THE DIAGNOSIS

When you are diagnosed as needing a transplant you are being told that there are no good recovery alternatives for your disease.  It is likely that most of them have been tried.  While the physician is unlikely to tell you that your days are numbered you will probably hear that you that you have an end-stage disease.  That’s Dr. talk for, “You are dying.”  Getting that news is a traumatic event and you may need to discuss it with someone or even get professional help.

In order for your medical team to determine if you need a transplant you will have to undergo a thorough physical and mental evaluation.  Before they do that, though, there is a critical questions that must be answered,  “Do you have the financial resources to pay for a transplant should they find that you need one?”  If you cannot answer that question affirmatively a hospital social worker might be able to help but your chances of getting a transplant will be delayed until that single question gets a positive answer.  Once answered, though, the evaluation process begins and you will embark on an unprecedented medical voyage.   Among other things they have to determine  that you are a good surgical risk.

In addition to assessing  your physical condition, the team will consider  your attitude and psychological state among other factors. Donated organs are a rare commodity, so doctors don’t want to proceed unless they are sure that a patient is physically and mentally prepared for both the procedure and for life following it.  Your transplant team will also want to ensure that you have a competent caregiver,  someone you can depend on to watch over your recovery.  This is a key element of the process, you simply must be able to show that you have a caregiver who will make a significant investment of time as you regain your strength so you can return to a “normal” life. 

And…a caution if you smoke or are addicted to either drugs or alcohol chances are you will be told you must quit or there will be no transplant.  Generally you have to show that you have abstained from the two for at least six months.   Again, organs are precious and there aren’t very many available so medical facilities want transplant candidates that can prove they will take good care of them.

When the tests are complete and show clear medical evidence that you need an organ transplant, your physician will present your case to the medical center transplant committee.  If they approve, you will be added to the national transplant list at the United Network for Organ sharing (UNOS).  Then the wait begins and that, too, is traumatic.  Some people never get an organ, others wait a long time and some, like me are luckier and have a short wait.  Mine was only thirteen days but it took twelve years after my diagnosis before I was sick enough to get on the list.

THE SURGERY

Once the transplant committee approves you for the procedure you will be placed on the national transplant list and then you wait…you wait for “THE CALL.”    When it comes  you will be asked to get to your medical center rather quickly where they likely will perform additional tests in preparation for the surgery.  Prep includes giving you something that will “relax” you.  In reality it will knock you out.

You will awaken in intensive care, surrounded by beeping, chirping monitors, IV bags hanging from chrome stands, electrodes attached to your body and perhaps a ventilator.  Awakening from the surgery can be scary, because you may not be fully aware of what happened or where you are, and because of the ventilator you will be unable to talk. Most often they remove the “vent” as soon as possible.  In my case it was gone when I awakened.

Usually the medical staff will try to get you on your feet and moving around as soon as possible but depending on the transplant and your condition hospital stays can range from a week or so to a much longer period of time.  Then there is the recovery process and having gone through it this blogger strongly advises you to do everything your physicians suggest because that’s what will keep you alive.  

As I mentioned earlier, the organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  Recovery from these surgeries is sometimes difficult and for a while following surgery you will make many return trips to see your coordinator and physician.

THE RECOVERY

Critical Information You Need To know

Below I have listed the recovery process for all six of the organ transplants I listed earlier.  I chose to use a different transplant center for each organ to show that while centers may differ a little in the recovery process the bottom line is always the same and that is to ensure that the patient has a sound recovery and can then lead a healthy and satisfying life.  

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better — and you might even feel good enough to add some new activities. A daily exercise program will continue to improve your health and help you maintain a positive attitude.

You will not injure yourself or your new kidney if you follow some of these general guidelines:

  • Avoid lifting heavy objects and strenuous physical work for at least six to eight weeks following surgery. It is important that you also do not lift anything heavier than 20 pounds for two to three months, and nothing heavier than 40 pounds for four to six months from the date of your surgery.
  • Avoid driving for at least six weeks following surgery. Plan ahead so a friend or family member can help out during this time. When you are in a moving vehicle, always use your seat belt.
  • Exercise is encouraged, and we recommend beginning with stretching exercises and walking. Other excellent exercises include jogging, hiking, bicycling, tennis, golf, swimming, and aerobics. All of these can help you regain your strength and may be started gradually after your incision has healed.
  • As a general rule, rough contact sports should be avoided since they might cause injury to your transplanted kidney. If you have doubts about any activity, please ask the Transplant Team.

When will I be able to return to work?

Many kidney transplant patients are able to return to work within a few months following a successful surgery. However, various aspects of the recovery process can effect the timing of your return.

You will need to discuss returning to your job with the Transplant Team. When the time approaches, a “return to work” letter will provided. This will let your employer know when you may begin working and what limitations, if any, you have.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let the Transplant Team know when you plan to go and provide a phone number where you can be reached. By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medicine with you and make sure you have enough medicine to last throughout your trip.
  • If you are traveling by plane, carry your medicine with you. Never check them with your luggage.
  • Make sure you have your Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to your Transplant office.

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

Because I got a heart transplant at the Mayo Clinic in Jacksonville Florida in 2007 it is the one with which I am most familiar.  I was in the hospital for 9 days and experienced little discomfort other than feeling weak.

What you can expect

During the procedure
Heart transplant surgery usually takes about four hours — longer if you’ve had previous heart surgeries or if there are complications during the procedure. The surgeon will open your chest and connect you to a heart-lung machine to keep oxygen-rich blood flowing throughout your body. The diseased heart is removed, and the donor heart is sewn into place. The new heart often starts beating when blood flow is restored. Sometimes an electric shock is needed to make the donor heart beat properly.

You’ll be in pain after the surgery, which will be treated with medications. You’ll also have a ventilator to help you breathe and tubes in your chest to drain fluids from around your lungs and heart.

After the procedure
After you’ve had surgery to place your donor heart, you’ll likely remain in the hospital for a week or two, and then you’ll be closely monitored at your outpatient transplant center for about three months. While at the transplant center, you’ll have regular tests on your donor heart, including blood work, echocardiograms, electrocardiograms and heart biopsies.

There are also several long-term adjustments you’ll need to make after you’ve had your heart transplant. These include:

  • Taking immunosuppressants. These medications decrease the activity of your immune system to prevent it from attacking your donated heart. Because your immune system will most likely never get used to the new organ, you’ll take some of these medications for the rest of your life.

These medications may cause noticeable side effects. With taking some post-transplant drugs, such as corticosteroids, your face may become round and full, and you may gain weight, develop acne or facial hair, or experience stomach problems. Some of the effects are more noticeable when you first start the drug regimen, but decrease in severity later on.

Because immunosuppressants make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some drugs could worsen — or raise your risk of developing — conditions such as high blood pressure, high cholesterol, cancer or diabetes. Over time as the risk of rejection is reduced, the doses and number of anti-rejection drugs can be reduced, but you will need some immunosuppressant medications indefinitely.

  • Managing medications and therapies. After a heart transplant, taking all your medications as your doctor instructs is important. It’s a good idea to set up a daily routine for taking your medications so that you won’t forget. Keep a list of all your medications with you at all times in case you need emergency medical attention, and tell all your doctors each time you’re prescribed a new medicine.
  • Cardiac rehabilitation. After your transplant, you may find it difficult to adjust to new lifestyle changes, such as diet and exercise. Cardiac rehabilitation programs can help you adjust to these changes so that you can regain your strength and improve your quality of life.
  • Emotional support. Your new medical therapies and the stress of having a heart transplant may make you feel overwhelmed. Many people who have had a heart transplant feel this way. Talk to your doctor if you’re feeling stressed or overwhelmed. Transplant centers often have support groups and other resources to help you manage your condition.

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

Use these patient resources to understand steps you need to take after your lung transplant procedure at Duke.  Click on the links for full details.

Infections in a transplant patient can be quite serious, even life-threatening. Good hand washing, along with a few other practices will help prevent infection.

After lung transplant, your health will be constantly monitored to ensure that your lungs are healthy and not being rejected .

Learn what symptoms may signal infection and find out what steps to take to maintain your health and prevent infection.

After transplant, your body is more susceptible to infection. Learn how to avoid and manage common infections.

Rejection of your transplanted lung(s) can occur at any time following your surgery. Discover steps to take to avoid rejection or ways to manage your health if you do experience rejection of your new lungs.

Learn what to expect in regards to pulmonary preparation and rehabilitation before and after lung transplant.

Diet and nutrition are very important aspects of everyday care after a lung transplant. Find guidelines to keep you healthy after transplant.

Sexual activity doesn’t have to be avoided after lung transplant. Following a few simple guidelines will ensure that you stay healthy while enjoying sex.

When patients show signs that their new lungs are being rejected, we have a number of ways to combat that rejection including steroids, RATG, and Campath.

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

You will be encouraged to get out of bed as soon as possible– usually the first or second day after surgery. This is an important way to prevent pneumonia. We will encourage you to walk around your room and down the hall at least three times a day. Walking increases your blood circulation, helps relieve gas pains, and helps maintain your muscle tone.

Each morning, we will draw blood to follow your progress and adjust your daily medicines. The most important blood tests to measure your kidney function are B.U.N. and CREATININE.

Another way to watch your new kidney’s progress is to accurately measure how much fluid you drink each day and how much urine you put out. At first the nurses will measure this for you. Eventually you will be taught to do this for yourself.

You will be weighed daily before breakfast. It is important to weigh at the same time each day on the same scales with the same clothes on. This is a habit you’ll need to continue after you’re sent home. Weight gain can be a sign of rejection of your new kidney.

Once you and your nurse feel you are able to care for yourself outside the hospital you will be sent home. If you live out of town you may want to stay at the Guest House Inn near Vanderbilt for a short period of time after discharge. During this time you will be coming back to Vanderbilt for outpatient evaluation two to three times per week.

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

After surgery, you will go directly to the intensive care unit (ICU), usually for one or two days. Immediately after surgery, a breathing tube will be inserted to help you breathe. In most cases the tube can be removed within 24 hours after surgery. Many monitoring lines also will be attached; these, too, will be removed as you become more stable. When you are ready to leave the ICU, you will be cared for on the 14th floor of the hospital if you’re an adult. Children are cared for on the sixth or seventh floor. Everyone recuperates from liver transplantation differently. Depending on your condition, you will be hospitalized for two to eight weeks following the transplant.

After the Hospital

After you are discharged from the hospital, you will be seen in the liver transplant clinic at least once a week for the first month. As you improve, you will be seen less often; eventually, you will be seen once a year.

If you are not from the San Francisco area, you probably will need to stay close by for the first month after discharge. After that, your doctor or a specialist near your home will provide follow-up care. Laboratory blood tests are obtained twice a week following transplantation. Gradually, the frequency of blood tests will be reduced.

You will be notified about any adjustments in your medications. Complications can occur with any surgery. Patients undergoing organ transplantation may face additional complications. The life-threatening disease that created the need for your transplant may affect the functioning of other body systems. Other risks, such as rejection, also may occur.

Some possible transplant complications and medication side effects include:

  • Hemorrhage — One function of the liver is to manufacture clotting factors. When a liver fails, the ability to produce clotting factors is impaired. To correct this problem, you will receive blood products before and after surgery. It is expected that your new liver will start working very quickly to help prevent any excessive bleeding, but it is possible that you may be returned to surgery to control the bleeding, particularly if it occurs within the first 48 hours after transplant.
  • Thrombosis — This is a serious complication that may require a second transplant. If a blood clot forms in a vessel leading to or from your liver, this may injure your new liver. You will receive special anticoagulation medication to prevent thrombosis.
  • Rejection — Your body’s defense system, the immune system, protects you from invading organisms. Unfortunately, it also views your new liver as foreign and will try to destroy it in an attempt to protect you. This is known as rejection. To prevent this from occurring, you will be given special immunosuppressive medication that must be taken for the rest of your life. Rejection can be diagnosed early by performing weekly liver biopsies during the first few weeks after liver transplant. Although rejection is common, with early diagnosis and treatment the situation can be controlled in more than 95 percent of cases.
  • Recurrent disease — Many liver diseases may come back after your transplant. Hepatitis C is the most common disease that can reoccur following a liver transplant. Your doctors will discuss this further with you.

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

After your small bowel transplantation, there are two challenges. First, you must manage the pain and recover. Second, you must learn to manage living and eating with a transplanted small bowel.

Will I be in pain?

Immediately following surgery, you will experience pain. We will do everything we can to make you as comfortable as possible. Most transplant patients have a significant reduction in pain several weeks after surgery. Some people continue to have some discomfort for a longer time.

Where will I spend my time in the hospital?

Immediately after surgery, you will be transferred to the intensive care unit. You will spend several days there as the Transplant Team monitors you very carefully.

After your stay in the intensive care unit, you will be transferred to the General Transplant Unit, where you will be instructed on how to assume responsibility for your everyday care. You will be encouraged to get out of bed at least three times a day and walk around your room and the halls. This increases your circulation and aids in healing.

What are the possible risks and complications?

You team is watching for the following possible complications:

  • Increased ostomy output
  • Fever
  • Nausea and/or vomiting
  • Blood in stools/ostomy output
  • Change in appetite

Please do not be scared or anxious about possible complications. Our team has many solutions for possible complications. All transplants carry risk and we will do everything we can to minimize those risks.

How long will it take to know if the new small bowel is working?

There may be a delay in the function of your transplanted small bowel. This may increase the length of your stay in the hospital as well as the risk of complications. There is also the possibility your transplanted small bowel will not function. You would be relisted in the highest priority category allowed.

What about the possible risk of infection?

Infection is always a concern following any major surgery. The Transplant Team will monitor you for signs and symptoms of an infection.

How long before I can leave the hospital?

You must remain in the local area (within two to three hours of Washington, DC) for four to six weeks post discharge for monitoring

While the information you just consumed is general in nature you will likely find that with a few modifications it is the process most transplant centers will follow.  If you have more specific information needs you should call your transplant coordinator, social worker or physician.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

This List Could SaveYour Life


The 2012 Frankenstorm that started out as hurricane Sandy had a devastating effect on the eastern seaboard of the United States.   In situations like that it is critically important for the sick, elderly and those who are recovering from organ/tissue transplants and other procedures to be specially prepared to provide accurate medical information to emergency responders.

Being prepared for Frankenstorms is essential but mini storms pop up every day.  You never know when for no apparent reason your blood pressure increases dramatically,  you have difficulty breathing, you experience unexplainable weight gain or an angina attack sends you to the emergency room.  When that happens someone is going to ask what meds you are on, how often you take them, their dosage, contact information for your medical team and insurance info.  Under pressure and when sick it is not uncommon to forget important information.  That’s why I developed this list.   If you have already done what I recommend then review and update your effort.  If you haven’t, do it now while you have the time.

Developing the following information could save your life. There is nothing that can help emergency responders or medical professionals more than providing them with the information suggested below. It is critically important to your life that you take the time right now to do the following:

Information to include on an emergency medical information fact sheet: (sample at the end of this blog)

  • Your full name, address and phone number
  • Next of kin or person(s) who should be notified in case of your emergency including contact information (names, phone, address, email, cell phone)
  • Your Primary care physician name and phone number
  • Specialty care physicians names and numbers
  • The pharmacies you use (include phone numbers)
  • Health insurance company, agent and policy numbers (If on Medicare or Medicaid include that notation with account numbers).
  • Prescription insurance numbers
  • List all the medical conditions for which you are being treated
  • List all surgeries
  • Blood type
  • Write down every medication you take whether by prescription or over the counter.  Include milligrams for each, how often you take them and for which medical condition.

DO NOT GO ANYWHERE WITHOUT AT LEAST A WEEK’S SUPPLY OF YOUR MEDS!   This is especially important during a disaster situation in which transportation, emergency and other services are strained, temporarily unavailable or even suspended.

Some people, transplant patients and recipients in particular must take certain medications to stay alive.  In situations like storms or other natural or unnatural disasters and emergency situations you could be faced with a situation in which you are unable to go home to retrieve your medications and other important belongings.  I suggest you do what I do and that is to keep a shoulder bag packed with your meds and other medical equipment that is within your reach at a moment’s notice. If possible you should also try to stash some cash in your emergency bag.  You might find yourself in a situation where checks and credit cards are useless.

If you have a cell phone and an extra charger, put it in your meds bag.  If you don’t have an extra charger keep the one you have in your meds bag when you are not using it. There is nothing worse than being unable to get to your charger when your phone is going dead.  That phone could be your link to safety and treatment.

If you wear a medical necklace or bracelet, make sure it is up to date and accurate.  If you don’t wear one and have time, get one.

When you have completed the medical emergency list (it should all fit on one sheet of copy paper) make two or three copies, fold them carefully and put them in your purse or wallet.  Emergency medical people can be of the most help if they are aware of your medical history, current medications and other treatments you may be getting.  Having that list in your possession and providing it to medical experts could save your life.  While you may know all of this information, do not depend on your memory.  One omission could prove to be catastrophic.  You must also remember to update the list every time you get a new medication, quit using one, or have any change in your medical condition.

A separate list should be developed for your personal use.  It should include phone numbers of emergency services you might need and iportant family and friend contacts you might need (include cell phone numbers and email addresses).

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA  August 21 2007  Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane Anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555

Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA.  Address, phone numbers

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA. 
Address, phone numbers

Transplant Cardiologists, Dr. Heartthump best clinic USA. 
Address, phone numbers

Transplant Coordinator:  Nurse Jane best clinic USA/
Address, phone numbers

 Pharmacy: 

Primary:  Best Pharmacy USS. 
Address, phone numbers

Secondary: Second best pharmacy USA. 
Address, phone numbers

 Health insurance:

Primary Medicare part A, Hospital, part B, Medical. Policy number other info

Secondary, AARP Medicare Supplement .   policy number other info

Medicare part D Prescriptions, AARP Medicare RxEnhanced policy number, other info

 

ALLERGIES:  Penicillin, cats, all seafood/fish, mold, dust.  

 BLOOD TYPE: B Positive

MEDICATIONS

 Heart related medications

  • Anti-rejection Cyclosporine 200 mg  twice a day
  • Anti-rejection — Cellcept  1000 mg twice a day
  • Anti-cholesterol — Prevastatin 20 mg once a day
  • Blood Thinner – Aspirin 81 mg once a day
  • Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

  • Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
  • Thyroid — Levothyroxine .088 MG once a day  (upon arising)
  • Asthma – ProAir albuterol  rescue inhaler as needed
  • COPD – Foradilinhale one capsule twice a day
  • COPD – Spiriva inhale one capsule once a day (upon arising)
  • Depression-Remeron  7.5 –mg once a day-

 Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical Conditions

  • Asthma, hay fever, allergies diagnosed 1951
  • Non-smoker
  • COPD diagnosed October 2000
  • Restless leg syndrome diagnosed 1996
  • Chronic lower back pain

Surgeries

  • Heart transplantBest Hospital 
  • Anywhere USA August 2007
  • Cholecystectomy 1994
  • Total left knee replacement 1998

This list is on my computer and on my cell phone.  Also, I carry two paper copies in my wallet at all times and update it whenever there is a condition, prescription, insurance or medical team change.  Every time I hand this list to ER personnel, or anyone else who asks for it they all say the same thing, “Everyone should carry a list like this it is of invaluable help to us and could save your life.”

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

How Alcohol Can Wreck Your Body


(This report is from the U.K.  You will notice that it refers to “units.”  That’s the same as a about a half of one “shot” of alcohol in the U.S.)  http://tinyurl.com/948cvhs

From heart to liver and brain to kidneys, a night on the tiles makes demands on us that we don’t fully realise. Peta Bee reports

6pm One Unit: It’s been a long day…

BRAIN: From the first sip, alcohol is absorbed into the bloodstream and reaches the brain. Although you won’t be aware of it, there is an impairment of brain function, which deteriorates further the more you drink. Cognitive abilities that are acquired later in life, such as conduct and behaviour, are the first to go. Early on you will experience mild euphoria and loss of inhibition, as alcohol impairs regions of the brain controlling behaviour and emotion. Most vulnerable are the brain cells associated with memory, attention, sleep and coordination. Sheer lack of mass means that people who weigh less become intoxicated more quickly, and women will feel the effects faster than men. This is also because their bodies have lower levels of water.

HEART: Your pulse quickens after just one unit. Alcohol is a vasodilator – it makes the peripheral blood vessels relax to allow more blood to flow through the skin and tissues, which results in a drop in blood pressure. In order to maintain sufficient blood flow to the organs, the heart rate increases. Your breathing rate may also speed up.

8pm Five Units: Whose round is it then?

DIGESTIVE SYSTEM: The Government advises men to drink no more than three to four units a day and women no more than two to three, so after two pints of normal-strength beer (four units) or a large glass of red wine (3.5 units) we have already exceeded our healthy guidelines. The alcohol is absorbed through the stomach and small intestine and if you are not used to it, even small amounts of alcohol can irritate the stomach lining. This volume of alcohol also begins to block absorption of essential vitamins and minerals.

SKIN: Alcohol increases bloodflow to the skin, making you feel warm and look flushed. It also dehydrates, increasing the appearance of fine lines. According to Dr Nicholas Perricone, a dermatologist, even five units will lead to an unhealthy appearance for days.

11pm 10 Units: Sorry, what was your name again?

LUNGS: A small amount of alcohol speeds up the breathing rate. But at this level of intoxication, the stimulating effects of alcohol are replaced by an anaesthetic effect that acts as a depressant on the central nervous system. The heart rate lowers, as does blood pressure and respiration rates, possibly to risky levels – in extreme cases the effect could be fatal. During exhalation, the lungs excrete about 5 per cent of the alcohol you have consumed – it is this effect that forms the basis for the breathalyser test.

1am 15 Units: Let me tell you about my ex…

LIVER: Alcohol is metabolised in the liver and excessive alcohol use can lead to acute and chronic liver disease. As the liver breaks down alcohol, by-products such as acetaldehyde are formed, some of which are more toxic to the body than alcohol itself. It is these that can eventually attack the liver and cause cirrhosis. A heavy night of drinking upsets both the delicate balance of enzymes in the liver and fat metabolism. Over time, this can lead to the development of fatty globules that cause the organ to swell. It is generally accepted that drinking more than seven units (men) and five units (women) a day will raise the risk of liver cirrhosis.

3am 20 Units: Where am I? I need to lie down

HEART: More than 35 units a week, or a large number in one sitting, can cause ‘holiday heart syndrome’. This is atrial fibrillation – a rapid, irregular heartbeat that happens when the heart’s upper chambers contract too quickly. As a result, the heartbeat is less effective at pumping blood from the heart, and blood may pool and form clots. These can travel to the brain and cause a stroke. Atrial fibrillation gives a person nearly a fivefold increased risk of stroke. The effect is temporary, provided heavy drinking is stopped.

BLOOD: By this stage, alcohol has been carried to all parts of the body, including the brain, where it dissolves into the water inside cells. The effect of alcohol on the body is similar to that of an anaesthetic – by this stage, inhibitions are lost and feelings of aggression will surge.

The morning after: Can you please just shut up…

BRAIN: Alcohol dehydrates virtually every part of the body, and is also a neurotoxin that causes brain cells to become damaged and swell. This causes the hangover and, combined with low blood-sugar levels, can leave you feeling awful. Cognitive abilities such as concentration, coordination and memory may be affected for several days.

DIGESTION: Generally, it takes as many hours as the number of drinks you have consumed to burn up all the alcohol. Feelings of nausea result from dehydration, which also causes your thumping headache.

KIDNEYS: Alcohol promotes the making of urine in excess of the volume you have drunk and this can cause dehydration unless extra fluid is taken. Alcohol causes no damage or harm to the kidneys in the short term, but your kidneys will be working hard.

One year on: Where did it all go wrong?

REPRODUCTIVE ORGANS: Heavy drinking causes a drop in testosterone levels in men, and causes testicular shrinkage and impotence. In females, menstrual cycles can be disrupted and fertility is affected. Studies have shown that women who drink up to five units of alcohol a week are twice as likely to conceive as those who drink 10 or more. It is thought it may affect the ability of the fertilised egg to implant.

BRAIN: Over time, alcohol can cause permanent damage to the connection between nerve cells. As it is a depressant, alcohol can trigger episodes of depression, anxiety and lethargy.

HEART: Small amounts of alcohol (no more than a unit a day) can protect the heart, but heavy drinking leads to chronic high blood pressure and other heart irregularities.

BLOOD: Alcohol kills the oxygen-carrying red blood cells, which can lead to anaemia.

CANCER: Excessive alcohol consumption is linked to an increase in the risk of most cancers. Last week, Cancer Research UK warned how growing alcohol use is causing a steep rise in mouth cancer cases.

PANCREAS: Just a few weeks of heavy drinking can result in painful inflammation of the pancreas, known as pancreatitis. It results in a swollen abdominal area and can cause nausea and vomiting.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Prison’s Deadliest Inmate, Hepatitis C, Escaping


In our continuing series on Hepatitic C we offer this story from NBC and the Associated Press  3/14/2007

Public-health workers warn of looming epidemic of ‘silent killer’

Marcio Jose Sanchez  /  AP

VACAVILLE, Calif.  — The most dangerous thing coming out of prison these days may be something most convicts don’t even know they have: hepatitis C.

Nobody knows how many inmates have the disease; by some estimates, around 40 percent of the 2.2 million in jail and prison are infected, compared with just 2 percent of the general population.

Eventually, when they are released, medical experts predict they will be a crushing burden on the health care system, perhaps killing as many people as AIDS in years to come. At the same time, they will be carriers, spreading the disease.

Hepatitis C can be treated, but many prisons do not test for it. Among the reasons: Budgets are tight, and treatment is expensive. So prison officials close their eyes to the gathering emergency and pass it along to the outside world.

“Right now there’s a golden opportunity to bring solutions to this problem before it hits,” said Dr. John Ward, director of viral hepatitis at the National Center for HIV/AIDS at the Centers for Disease Control and Prevention in Atlanta.

Hepatitis C is already the most common disease of its sort in the United States — a chronic, life-threatening, blood-borne infection. It is most commonly linked to infected needles used for drugs, though prison tattoos and body piercing with non-sterile equipment are also risky.

‘Silent killer’
What makes this virus particularly insidious is that as many as half of the people who have hepatitis C don’t even know they have it. The “silent killer,” already considered epidemic by the World Health Organization, often remains dormant for decades.

Some of the infected are lucky: One in five people who get hepatitis C will clear it out of their system naturally. But without treatment, one in four will suffer liver failure or develop liver cancer. Last year liver cancer was the only one of the top 10 fatal cancers in this country to increase, in large part because of hepatitis C.

More than $1 billion is already spent each year on this country on hepatitis C, and those costs are expected to soar unless prevention and treatment are expanded.

Without those changes, researchers project that liver-related deaths will triple from around 13,000 in 2000 to 39,000 by 2030. It’s also estimated that 375,000 Americans with hepatitis C will develop cirrhosis by the year 2015.

Anita Taylor, 48, is already there, in end-stage liver disease. Taylor speaks very slowly and moves with care. She often finds that she can’t say the words she wants to — they just won’t come out. Her body hurts most of the time. Her nose bleeds a lot.

‘Doctor gave me a death sentence’
A mother of two and former heroin addict, Taylor said she learned she had hepatitis C when she was jailed in Nevada in 1991 for being under the influence of drugs.

“They tested me and told me I had hepatitis C. They didn’t tell me there was a treatment and a cure,” she said. “And I didn’t know to ask.”

Taylor’s experience is not unusual.

“The doctor gave me a death sentence, recalls Leslie Czirr, a 36-year-old parolee. “He told me, ’There’s no cure for this and you will die from it unless you are hit by a truck first,”’

Czirr learned she had hepatitis C during a prenatal examination in 1996, at a time when she wasn’t in prison. Czirr has been arrested 10 times for drug possession and served almost eight years in prison on various drug possession and dealing charges.

She has started to suffer exhaustion, brain fog and aches. She recently enrolled in a county program to be treated — treatment, she said, she was denied at California’s Norco State Prison.

“I asked and asked, but they barely want to give you a Motrin,” she said. “I really want to get well, not just for myself, but so I’m not putting anyone else at risk.”

Limited studies indicate that fewer than 10 percent of prisoners who have contracted hepatitis C are treated. The reason vary. Medical staff have other priorities, and not all are well-informed about the disease. Prisoners with short sentences are often excluded because they won’t be able to complete treatment, and drug addicts who are inclined to return to risky behavior are often turned away because it is assumed they will simply reinfect themselves.

No funding for treatment
Usually, though, it comes down to money. Prison officials say that even if they wanted to provide the treatment, it is extremely expensive — about $9,500 per patient per year — and no federal funds have been earmarked to pay for it.

“It’s a hard sell to convince taxpayers why additional resources should be spent on the health care of the incarcerated when there are a lot of people who aren’t incarcerated who don’t have adequate health care,” said Dr. Joseph Bick, chief medical officer at the California Medical Facility at Vacaville.

Many of the inmates in Vacaville’s hospice unit — reserved for those given six months or less to live — are dying from hepatitis C-related ailments. Bick said half of the prison’s 3,200 inmates have a history of having been infected with hepatitis C, and at any given time about 40 of those men are receiving the intensive drug treatment to cure it.

“I’m pretty sure this is how I got it,” said Anthony Harris, an inmate at Vacaville. He rubbed his forearm hard, as if trying to remove the prison tattoo bearing his children’s names.

Harris, 51, is a former barber serving a life sentence for second-degree murder. In 2003, a doctor at another prison told him he had Hepatitis C; he researched the disease in the prison library and has sought treatment ever since.

“They gave me shots for Hep A and B, got rid of them. I’d like to get rid of the C too,” he said. “I’m entitled to that. But some docs will give you the treatment and others won’t. I keep making appointments. I keep asking.”

The course of treatment can take a year, and involves taking pills twice a day and weekly injections. Side effects are like those associated with chemotherapy — nausea, exhaustion, depression, debilitating aches and pains — and the cure only works about half the time.

But Bick said the high cost of treating prisoners for hepatitis C is a bargain compared to the bill that would come due if these cases are left untreated. “It’s a tremendous opportunity for us to have an impact on the larger health of the community,” he said.

Dr. Lynn Taylor, an assistant professor of medicine at Brown University’s medical school, agrees that prison is “perhaps one of the best setting for treatment of high-risk individuals.”

‘Window of opportunity’ for public-health efforts
“Prison can be a window of opportunity to reduce the reservoir of infection,” she said.

But there are no federal rules about testing and treating hepatitis C. Federal guidelines, issued by the CDC in 2003, said correctional facilities should “become part of prevention and control efforts in the broader community.” But they don’t recommend screening for all inmates.

Instead, the CDC urged medical staff to ask new inmates about their risk factors, and only those prisoners who seem likely to be exposed should undergo screening, which costs $5 to $10.

The CDC guidelines fell short, said Dr. Josiah Rich, a professor at Brown who directs the university’s Center for Prisoner and Human Rights. Rich’s studies confirm that convicted criminals are almost always willing to be tested for hepatitis C, but will often lie to prison authorities about their past drug use.

“We already know that more than one in three people coming through corrections has Hep C, so by definition everyone coming in is high risk. It’s absurd that they’re not testing everyone,” he said.

Rich concedes that testing every inmate will “jack up costs” for prisons.

“An individual is going to say, ’Hey, you tested me, you said I was positive, and now I want to be treated, and I’m going to sue you if I don’t get treated,”’ he said.

Lawsuits on the rise
Lawsuits are, indeed, on the rise.

The first significant case came in 1999, when officials at the Luther Luckett Correctional Complex in La Grange, Ky., refused to allow inmate Michael Paulley access to free hepatitis C treatment. Paulley, who was serving a 25-year sentence for rape and burglary, sued and won.

But the treatment came late and he died in 2004, the year he would have been eligible for parole. The litigation prompted broader testing and treatment in Kentucky, but Paulley’s physician, Dr. Bennet Cecil, a Louisville, Ky.-based hepatitis C specialist, said prisoners still die “all the time” for untreated hepatitis C.

“I think it’s immoral if a country, a state a society is going to incarcerate somebody and then deny them necessary medical care. I think that’s an outrage,” he said.

Prisons in at least a dozen states — Alabama, California, Delaware, Florida, Georgia, Idaho, Michigan, Mississippi, Nebraska, New York, Oklahoma and Virginia — are being sued over failure to treat hepatitis C.

But it’s tough going, said Oregon civil rights attorney Michelle Burroughs. Although she’s won a settlement that mandated testing for at risk inmates and treatment for those who are eligible, five of the 10 inmates she’s representing in a class-action lawsuit have died while the litigation proceeds.

5-year wait
“It’s appalling, horrendous, horrifying. Prisoners wait five years just to be evaluated,” she said.

Rep. Barbara Lee, D-Calif., recently reintroduced legislation that would mandate prison testing and treatment of hepatitis C. Earlier similar proposals in recent years have failed.

“The plain fact is that prisoners do not stay in prison. With more than 90 percent of incarcerated persons returning to their communities, it is clear that when a prisoner is infected, we are all affected,” Lee said.

In North Dakota, it didn’t take legislation, court orders or new regulations to prompt medical services director Kathleen Bachmeier to begin screening every inmate for hepatitis C after a methamphetamine epidemic tripled her state’s prison population in about a decade. As the intravenous drug addicts arrived, so did the hepatitis C.

“It became obvious to me that these people are going to cost the state a lot of money if we don’t do something about it,” she said.

North Dakota now treats anyone who meets certain medical criteria, whose sentence is long enough to complete the course of treatment and who is willing to try to quit using drugs.

“We look at this as a huge public health initiative,” she said.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

Critical Information About Managing your Medications


Reprinted and reformatted from WikiHow

With Additions by Bob Aronson

Have you just started a new medicinal regimen that requires you to take pills every day? Remembering to take your medication every day can be a chore, but it is also very important for your health. If you’re forgetful or simply have too many medications to track, then maybe this guide can help you remember to get the job done.

Start using a calendar. You can purchase a paper calendar and hang it in your room and teach yourself to look at it every day, making and leaving notes accordingly. You can also search through free electronic calendars on the Internet or use calendar software that may have come with your computer. Some of these allow you to add notes and automatically send you reminders by email or by SMS (i.e. text messaging).

Set visual reminders.

  • Put the medication close to something you need to deal with on a daily basis anyway. For example, if you take your medication in the morning, make sure that before going to bed at night, you place it next to the coffee pot, if you make coffee in the morning. Or, you can attach your medication bottle or pill box to your toothbrush with Velcro.
  • Make it part of your routine. If you take it every morning, make it a habit to take it as soon as you step out of the shower, or as soon as you get out of bed.
  • You can purchase sticky notes to leave in your kitchen, your car, or anywhere that you frequently visit. For medication that is stored in the fridge, you should paste a post-it note on the fridge door (or on your coffee pot) that says Take Pills.
  • Remember medication that needs to be taken with a meal, by keeping it right on the table, in front of the place that you eat.
  • If you are on your computer often, you might create a text file on your desktop that contains a list of things that you need to do. You can search the Internet for “electronic” sticky notes that you can place directly on your desktop, rather than purchasing paper ones. These programs will often allow you to set timers and reminders directly to the notes to flash or emit sounds accordingly.
  • If you have a complex regimen, write a list with the medication, time and date and tape the list to the mirror in your bathroom. You can also print this on a grid and check off each medication after you take it.
  • Set an auditory reminder. This is a common and fairly effective way to remind yourself to take your medicine. Most cell phones have an alarm function that allows you to set a “daily” alarm time where it rings. Choose a tone that will remind you that you need to take your medicine. If you do not own a cell phone, you might set your alarm clock to go off at a particular time each day for the same effect. Another alternative is to buy a digital watch and set the alarm to go off as many times per day as you need to take medication. A small digital kitchen timer with a numeric keyboard can be useful. Be sure to get one that can be set for hours, not just minutes and seconds. As soon as the alarm goes off, immediately take your medication to reinforce the habit. Saying “Oh, I’ll do it in a few minutes” can lead to repeated forgetfulness and defeat the purpose of having an alarm.
  • Sort your medication. Place all your medications, including your daily dose of vitamins on your kitchen counter. As you take one pill, close the bottle, and place it to the left of the counter, making two piles. Do the same for each pill you take. Remember that the ones you need to take are in front of you. The ones you have already taken are to the left of you. After you are finished taking all your pills for the day, place all those on the left hand side back into the kitchen cabinet. Now you will know that all of your pills have been taken. Pre-sorting the pills into a plastic container designed for this purpose (a pill box or medicine box) is another way to avoid taking the same medication twice by accident. If that compartment is empty, you know you took the meds. Pill sorters come in different sizes and different colors. Aim to have enough to sort two weeks of meds at a time.
  • Adopt a “divide and conquer” strategy. In other words, take half of your medicine and keep it in a place other than your household, such as your office at work. If you happen to forget to take your medicine in the morning, you can easily access your medicine at work.
  • Be mindful of your medicine’s storing conditions, especially if you plan to keep your pills in your car’s glove box on a hot summer day.
  • Get another person to remind you. Have a friend or loved one to remind you to take your medicine, or to ask you if you remembered to take your medicine.

Tips

  • Use your phone calendar to set recurring reminders daily. It’s a more subtle way to be reminded. If you use your company phone/Outlook, make sure you mark the appointment as “private” and keep the reminder description generic to protect your privacy

Be careful when deciding on reminders. If you get too comfortable with them (such as a note on your fridge or by your pill box) you may be more likely to overlook it or ignore it.

  • Not all medication is available or legal in all countries so you should check ahead. Any medication that may have a controlled substance may not be allowed in some countries so make sure you bring your prescription bottle and if possible a photocopy of your physician’s prescription.
  • If you choose to set an alarm on your cell phone, be sure that it is a tone that you can easily associate with taking your medicine, so that you do not become too accustomed to hearing a soft tone. Or, if all else fails, set it to the same tone as your normal ring tone.
  • Remember to take your medication with you when you go on holiday. When you pack your toothbrush, pack the medications you take also.  IMPORTANT!  NEVER CHECK MEDICATION WITH YOUR BAGGAGE.  ALWAYS KEEP YOUR MEDS WITH YOU IN CASE YOUR BAGGAGE GETS LOST.
  • If on vacation, pack your original, pharmacy-labeled medication bottles or keep a detailed list in your purse or wallet.  I have attached a sample list to the end of this blog.
  • Your meds list should also include critical medical information like insurance, physicians and clinics, and medical conditions. If it happens that you need emergency medical care, this will help the care providers to quickly determine what medications you take and how and why you take them, should you not be able to remember them or not speak for yourself. It is difficult, time-consuming and sometimes impossible for health care providers to identify unlabeled pills. For the same reason, do not dump different medications into the same bottle.
  • Before you go on a long vacation, ask your doctor to give you an extra prescription for your pills, so that if you run out, lose them, or spill them, you can have the prescription filled at any drugstore.
  • If you are taking medication for a serious condition such as heart disease, wear a Medical Alert tag, necklace or bracelet listing the name(s) of your illness and the medications you use to treat it/each. Also list any potentially hazardous interactions and allergies.
  • If one or more of your medications causes photo sensitivity, be sure to put on sunscreen before leaving your house, no matter what it looks like outside; you’d be surprised how little light is required to get a full-blown sunburn!

Warnings

  • Be mindful of making a mental note to yourself when you take your medicine. Forgetting to take your medication is one thing, doubling your dosage because you forgot that you’d already taken your medication for today is another. You could make a box next to your “Remember Pills”-note, tick it off when you’ve taken it.
  • If you do forget to take a dose, read the instructions that come with your medication carefully. Don’t assume that you should take your dose anyway- although this is the case for most, it can be different for others. If you have trouble reading, ask the pharmacist to explain the dosage directions.
  • Before leaving the pharmacy, check to make sure that the pills in the bag are the pills that you use. Pharmacists make mistakes also.
  • When leaving your medicine bottles around to remind you to take them, be careful if you have children so you do not leave the pills in a easy spot for a child to grab.
  • Be aware that certain prescription medications have a high potential for addiction or abuse. If you find yourself taking more of a medication than prescribed, call your doctor immediately to talk about the change.
  • Some medications, such as those classed as controlled substances, may not be appropriate to leave around the house. Place them in a locked cabinet, box or drawer, and do not move them from one building to the next. Try to not let others know that you are on such medications and avoid taking them in public. It’s not uncommon for people to steal certain medications, either to abuse themselves or to sell to others with similar intent.
  • It’s a Federal offence to transfer a controlled substance to anyone other than the person to whom it was prescribed (you). If you do wind up victim of a theft, report it immediately to avoid potential prosecution.
  • Some medications have ‘black box warnings’. This means that when taken incorrectly, or by those with certain conditions, fatalities may arise. Place these and other such medications in a safe location and call your doctor right away if you think you might have accidentally taken more than prescribed.
  • Sometimes the pharmacist gives out a stranger’s prescriptions by accident, read the label carefully.

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA

Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555 Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA

Transplant Cardiologists, Dr. Heartthump best clinic USA

Transplant Coordinator:  Nurse Jane best clinic USA

 Pharmacy: 

Primary:  Best Pharmacy USS

Secondary: Second best pharmacy USA

 Health insurance:

Primary Medicare part A, Hospital, part B, Medical

Secondary, AARP Medicare Supplement .   

Medicare part D Prescriptions, AARP Medicare RxEnhanced

 Allergies:Penicillin, cats, all seafood/fish, mold, dust.  

 Blood Type: B Positive

 Heart related medications

  • Anti-rejection Cyclosporine 200 mg  twice a day
  • Anti-rejection — Cellcept  1000 mg twice a day
  • Anti-cholesterol — Prevastatin 20 mg once a day
  • Blood Thinner – Aspirin 81 mg once a day
  • Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

  • Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
  • Thyroid — Levothyroxine .088 MG once a day  (upon arising)
  • Asthma – ProAir albuterol  rescue inhaler as needed
  • COPD – Foradilinhale one capsule twice a day
  • COPD – Spiriva inhale one capsule once a day (upon arising)
  • Depression-Remeron  7.5 –mg once a day-

 Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical conditions

  • Asthma, hay fever, allergies diagnosed 1941
  • Non-smoker
  • COPD diagnosed October 2000
  • Restless leg syndrome diagnosed 1996
  • Chronic lower back pain

Surgeries

  • Heart transplantBest Hospital 
  • Anywhere USA August 2007
  • Cholecystectomy 1994
  • Total left knee replacement 1998

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

  • You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Yes, Brain Death Means You Are Really Dead!


Are brain dead patients really dead?  That’s the question many people are asking because of stories circulated by irresponsible journalists, TV shows and movies who seek sensational plots and people who just refuse to acknowledge the facts.

The simple answer to this question is, “Absolutely.  If you’ve been declared brain dead by a qualified team of experts in a hospital setting then you are dead.  The New York Organ Donor Network put it best, “There are more tests to establish death done on potential organ donors than there are on people who are not donors.”

There have been several stories circulated about how “Brain Dead” people have recovered and gone on to live normal lives. I have spent the last month looking into these stories and have determined that while one or two are unexplainable primarily because families won’t release medical information all the rest were simply not true.

I have interviewed two world famous neurologists who have written extensively about brain death and who were part of the process that developed the rules for making that determination. The protocols for determining brain death are more rigorous than for proclaiming death under normal circumstances. Every single neurologist, physician or other medical expert I’ve talked with has said the same thing, “No one recovers from brain death!” New protocols were established in 2010 to make the testing even more rigorous and they require the physician who is declaring brain death to fill out a check list to be sure every step has been completed. Again, this process is more rigorous than what is used to declare death under normal conditions.

Here’s the checklist that must be followed in order to declare brain death:
Cause of Brain Death:
________________________________________________________________
Date of Exam: ____________________________
Time of Exam: ____________________________
A. Absence of Confounding Factors: RESULTS
1. Systolic blood pressure > 90 mmHg ______________________
2. Core temperature > 36˚C ______________________
3. Negative for drug intoxication or poisoning _______________________
4. Toxicology results ______________________
5. Negative for neuromuscular blocking agents ______________________
B. Cranial Nerve Reflexes and Responses:
1. No spontaneous muscular movements ______________________
2. Pupils lightfixed
_______________________
3. Absent corneal reflexes ______________________
4. Unresponsiveness to intensely painful ______________________
stimuli, e.g. supraorbital pressure
5. Absent response to upper and lower ______________________
airway stimulations, e.g. pharyngeal and
endotracheal suctioning
6. Absent ocular response to head turning ______________________
(no eye movement)
7. Absent ocular response to irrigation of the ears ______________________
with 100 mls. of ice water (no eye movement)
8. Apnea PaCo2>60 mmHg ______________________
a. PaCo2 at end of apnea test
b. PaO2 at end of apnea test
C. Medical Record Documentation of the above Examination
D. Comments
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
________________________________
Certification of Death
Having considered the above findings, we hereby certify the death of:
_____________________________________________________________________________
Physician Signature Printed Name Date/Time


There will always be naysayers and people who “know of people who recovered” but I am satisfied after considerable research that when brain death is declared it is final.

Brain death is never declared by anyone with any connection to organ recovery and transplantation. The transplant team is not even aware of the patient until after brain death has been declared. The physician who declares brain death is independent of the recovery and transplantation team. Physicians who attend to patients on a regular basis are sworn to and legally committed to do everything possible to save your life. They are not part of the transplant team either and in many cases the hospitals where people are declared brain dead don’t even have transplant teams because they are not transplant centers.

To add to theevidence I have offered is this information from Stacey Gelowitz  Renal Transplant Coordinator at Alberta Health Services Edmonton, Canada Area Hospital & Health Care.  While she is in Canada the American and Canadian processes for declaring brain death are virtually identical.  Here’s what she wrote:

“At our center, we define neurological death by two criteria: irreversible loss of the capability for consciousness AND irreversible loss of all brainstem functions (including breathing). The protocol we follow for adult NDD is as follows:
Done twice by 2 physicians independently, who are not associated with transplantation
(1) Deep unresponsive coma with known cause
(2) Absence of confounding factors (eg. alcohol, tricyclic antidepressants)
(3) Temp > 34 degrees C
(4) No brainstem reflexes
a. No motor responses except spinal reflexes
b. No cough
c. No gag
d. No corneal responses bilaterally
e. No vestibulo-ocular responses bilaterally
f. No oculocephalic reflex (Doll’s eyes test; contraindicated in spinal injury)
g. No pupillary response to light bilaterally (pupils 6mm)
h. Apnea test, pH < 7.28 and PaCO2 > 20mmHg above pre-apnea test level
(5) If pt doesn’t meet all above criteria, do ancillary tests to show absence of intracranial blood flow:
a. Radionuclide cerebral blood flow study
b. Cerebral angiography
It can be hard for families to comprehend that their loved one is dead because the heart continues to beat spontaneously and the person is supported by machines so they look asleep. Important to note is that…
* No brain function remains (in contrast to coma/vegetative state).

* Heart continues to beat because of mechanical support stabilizing body, e.g. ventilators. Remember: Sinus rhythm is controlled by cells within the heart (SA/AV nodes), so as long as the heart is being perfused adequately (getting O2 via blood), it is happy to continue beating. Medulla oblongata in brain controls rate and strength of beat, but not basic rhythm).

* Blood still flowing to body organs (heart, lungs, liver, kidneys, pancreas) allowing transplantation if donor family consents, the organs are functioning adequately, and the potential donor has no serious health concerns

It is VERY IMPORTANT that the donor does not have any factors that confound the diagnosis of brain death. I think it is in these circumstances that brain death is (very rarely) wrongly diagnosed. A great website that you can refer to that touches on these ideas: http://www.braindeath.org/clinical.htm. It goes through different confounding factors and why physiologically in their presence brain death cannot be declared.

I have not seen any reports where pts recover from ‘brain death’ and it was not due to one of these confounding factors. We have gotten much better as a medical community at recognizing the suppressive effects of this list and know now not to declare brain death in the their presence. I think where patients extremely rarely slip through that can lead to wrong diagnosis of brain death is in the following two circumstances: (1) pts are on an unknown substance that is not tested for on toxicology panels and suppresses brain stem reflexes. Or, (2) a pt receives a drug in hospital (eg sedative to stop seizures or allow intubation) and the pt metabolizes the drug extremely slowly. The latter example (slow drug metabolism) is more applicable to children/babies rather than adults, but can happen in both (here is a case study from our center describing just that: http://www.ncbi.nlm.nih.gov/pubmed/19818943). As a result, the time in which brain death is declared was extended.

People need to understand that these instances are incredibly rare. If there is any doubt that one of these confounding factors is contributing to a wrong diagnosis of brain death, another tox screen or temp etc can be done to rule out such factors. Take a look at the cases people are presenting on reversible brain death. I would bet that all fall under what is discussed above. That said, some people will still stick to their guns and not believe you no matter how much info is provided, and that’s okay too”

If anyone needs more information that I have provided here I suggest you contact a neurologist at your nearest transplant center and ask him or her.  If you still doubt the process then perhaps you should not be a donor.

 Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Cheney Got a New Heart — Ethicists Need One


I am an average American male, human being.  I’m not a genius not gifted just a man of normal intelligence who likes to think and read and research and write about about what I’ve found.  Some things really stump me, though.   I’m terrible at math, I love physics but don’t have a clue about how any of it works, and even after spending a good many years as a professional broadcaster I still don’t completely understand how the sound and picture got from me to your radio or TV.  What mystifies me most, though, is the thought process of people who call themselves ethicists.  The word is even hard to say, you kind of feel as though you have developed a lisp.

Just so we are all on the same page here, it is important to define our terms.  First the Dictionary.com definition of ethics  http://dictionary.reference.com/browse/ethics

eth·ics

   [eth-iks] Show IPA

plural noun

1. ( used with a singular or plural verb ) a system of moral principles: the ethics of a culture.

2. (the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc.: medical ethics; Christian ethics.

3. moral principles, as of an individual: His ethics forbade betrayal of a confidence.

4.( usually used with a singular verb ) that branch of philosophy dealing with values relating to human conduct, with respect to the rightness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions.

Art Caplan of the University of Pennsylvania, the man who questioned whether the Vice President was too old to get a transplant, is a “Bioethicist.” The same Dictionary gives this definition.

bi·o·eth·ics

   [bahy-oh-eth-iks] Show IPA

noun ( used with a singular verb )

a field of study concerned with the ethics  and philosophical implications of certain biological and medical procedures, technologies, and treatments, as organ transplants, genetic engineering, and care of the terminally ill.

Having established who and what we are talking about let us return to the continuing saga of the Cheney heart transplant.  The ethicists are rallying behind their colleague Art Caplan.  One said, “The ethical issues are not that he (VP Cheney) got a transplant, but who didn’t?”

What an absurd argument!  That could be said about anyone who got a transplant.  if a 40 year old got a new liver, do we ask, “Who didn’t get the liver he just received?” I may not know much about ethics but I do have a clue about logic and somehow logic has been lost in the arguments forwarded by these learned people.  I wonder how well any of them would do on “Are you smarter than a 5th grader.”  Probably not real well being as that takes knowledge not philosophizing.

At the risk of sounding like a reactionary I have to say that some of these ethicists are the ones who got us in this donation shortage in the first place.  For years the ethicists have been telling us that the only ethical way to obtain organs is through the “Altruistic” system which is what we have now — people voluntarily becoming donors.   This method has been in effect since 1984.  The problem is that it doesn’t provide anywhere near enough donors to satisfy the need, therefore from 6000 to 7000 people die each year while waiting for organs.

The ethicists have met many times to consider alternatives to altruistic donation and each time after a great deal of philosophizing, consternation and speculation have found that the alternatives are, you’ve got it, “unethical.”

Now I’m no rocket scientist and don’t have a PHD or a fancy title like “Bioethicist” but I do have common sense.  It seems to me that if you are really concerned about ethics you would have to expand your thinking to a bigger picture.  These ethicists appear to have quit thinking about the problem when they reached their myopic conclusion.  They conveniently ignore the fact that people are still dying and will continue to die because they refuse to allow change.  Doesn’t that deserve some of their “ethical” brainpower, philosophizing and speculation, too?   It is amazing to me how strangely silent these “holier than thou” ethicists are about not questioning the ethics of allowing people to die.

There may be an explanation for their actions though and that explanation was found way back in 1931,long before transplants were considered possible.  You see, even then the medical community was having problems with ethicists who considered themselves to be “Experts.”  http://tinyurl.com/7c8fnho

Harold J. Laski writing in the London’s Fabian Society, manuscript in February of 1931, presented a challenge to the expertise of an “expert” in decision-making with the following:
:
“But it is one thing to urge the need for expert consultation at every stage in making policy; it is another thing, and a very different thing, to insist that the expert’s judgment must be final. For special knowledge and the highly trained mind produce their own limitations which, in the realm of statesmanship, are of decisive importance.

Expertise, it may be argued, sacrifices the insight of common sense to intensity of experience. It breeds an inability to accept new views from the very depth of its preoccupation with its own conclusions. It too often fails to see round its subject. It sees its results out of perspective by making them the centre of relevance to which all other results must be related. Too often, also, it lacks humility; and these breeds in its possessors a failure in proportion which makes them fail to see the obvious which is before their very noses.

It has, also, a certain caste-spirit about it, so that experts tend to neglect all evidence which does not come from those who belong to their own ranks. Above all, perhaps, and this most urgently where human problems are concerned, the expert fails to see that every judgment he makes, not purely factual to nature, brings with it a scheme of values which has no special validity about it. He tends to confuse the importance of his facts with the importance of what he proposes to do about them.”

I have no idea who Mr. or Dr. Laski was but his profound insight into the psyche of ethicists is a perfect reflection of my thoughts only articulated far more effectively.

I suppose there’s a role for ethicists to play in our society but at this point in my life (73 years worth) I don’t need a so-called ethicist to explain the difference between right and wrong to me.  I’ve not studied the great philosophers to the extent they have but living as long as I have and having had a heart transplant has pretty much instilled in me a set of values that I think are pretty solid.  That’s probably true about most people. We don’t need much help in making moral decisions.  Do we want information?  Sure.  Will we accept advice?  Sometimes.  Do we need to have ethicists make decisions for us?  Never!  Unfortunately they do and It has cost thousands of lives.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission.  Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions.  This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

 Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Death by Journalism


On behalf of the over 1600 members of Facebook’s Organ Transplant Initiative and my Blog, Bob’s Newheart on WordPress, I am lodging a very strong objection to Dick Terisi’s inaccurate and life-endangering  column in the Wall Street Journal,  “What You Lose When You Sign that Donor Card.”  Not only should Mr. Terisi retract his irresponsible words he should also issue an immediate public apology to everyone on the national transplant list and their families.

Recently a hack journalist, Dick Terisi, published a column in the Wall Street Journal suggesting that American physicians were killing patients in order to extract their organs for transplant.  This irresponsible attack on a system that has saved thousands of lives and will save thousands more is worse than bad journalism it can only be termed what it is – death  by journalism, because there will be people who will refuse to become organ donors as a result.

I am a heart transplant recipient who knows the desperation felt by being on “the list.”  I can only imagine the emotional trauma Mr.Terisi caused with his reckless disregard for truth and lack of compassion for the dying and the loved ones who care for them.  He has also insulted the professional and personal integrity of every medical professional in the nation, but I’ll not take up their defense.  I’m sure they will rise to the occasion.

There are over 113,000 people on the aforementioned list but fewer than 30,000 transplants are done each year in the United States because of the shortage of organs.  That means that thousands die while waiting.  Mr. Terisi’s inaccurate portrayal of the donation system is based on “junk” science, anecdotal information and an “off the cuff” remark by a single physician.  It ensures that even more people will die because some readers will believe his distortions and either not become organ and tissue donors or change their existing designation to non-donor.

I know that others in the transplant community are preparing point by point responses to Terisi’s ravings so I’ll just touch on one – brain death. He told a simple lie so here’s the simple truth.

According to the American Academy of Neurology, brain death is defined as the irreversible loss of function of the brain, including the brain stem. The most common causes of brain death in adults are traumatic brain injury and subarachnoid hemorrhage (a form of stroke)   The guidelines for determining brain death were written by a team of experts lead by  Eelco F. Wijdicks, M.D., Ph.D. from the Mayo Clinic in Rochester, Minnesota.  Dr.  Wijdicks is considered the preeminent expert on brain death in the world – and he says, “The brain death diagnosis can be made only after a comprehensive clinical evaluation that often involves more than 25 separate assessments.”  These assessments must be done by highly qualified physicians.

OK…I’ve given you the simple truth now here’s a detailed  explanation as printed in Critical Care Nurse which is a far cry from the simple almost cavalier approach suggested by non-physician, non-medical expert, non-donor and self proclaimed, “heartless, selfish bastard” Dick Terisi.  http://ccn.aacnjournals.org/content/24/5/50.full

“Current standards for making a diagnosis of brain death require (1) identification of the suspected cause of the coma, (2) determination that the coma is irreversible, (3) performance of a clinical examination, and (4) interpretation of appropriate neurodiagnostic and laboratory tests.1 Identification of the cause of coma is based on the patient’s history and the results of neurodiagnostic tests such as computed tomographic scans. Common causes of brain death detected on computed tomographic scans include brain masses with or without herniation and edema.1 In determining the cause of the coma, conditions that could confound the clinical assessment must also be ruled out, such as hypothermia, hypotension, severe acid-base abnormalities, drug or alcohol intoxication, sedation, and neuromuscular blockade.

The next step in diagnosing brain death is performing a directed, clinical examination. According to the American Academy of Neurology,2 each criterion of the clinical examination should be satisfied on 2 separate occasions. The length of time between examinations has not been defined and varies depending on the cause of the coma. The American Academy of Neurology2 has suggested that a 6-hour interval between examinations is reasonable; others1 have recommended a period of up to 48 hours in instances in which unknown toxins may be responsible for the coma. In addition, 2 conditions must be met before the clinical examination is conducted: the patient’s blood pressure should be greater than 90 mm Hg, and the patient’s body temperature should be greater than 32°C (90°F).

The clinical examination includes an evaluation of overall responsiveness, brain-stem reflexes, and apnea testing. The patient should be deeply comatose, with no response to painful or verbal stimuli, including decorticate or decerebrate posturing. He or she should also have no spontaneous movement, including shivering, seizures, or respiratory movement. The single exception is movement resulting from spinal reflexes. The assessment of responsiveness and movement requires that the effects of all neuromuscular blocking agents and sedatives have worn off completely.”

Mr. Terisi’s column is bad enough but the Wall Street Journal cannot be absolved of blame.  Terisi would have had a far smaller audience and a minimized effect had the Wall Street Journal used sound journalistic judgment and trashed this extremely shoddy piece of journalism.  WSJ ought to join Terisi in the public apology I called for earlier but I expect neither to do so because that takes “class” and integrity — commodities which neither seem to possess.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida

Donation to Transplantation — How it Works


It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses  the donation/transplantation process.   My undying thanks to my donor, his family and my caregiver wife for giving me these extra years.  Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS).  UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia.  In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following.  Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States.  About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs.  This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation.  We at UNOS are glad to address more specific questions.

 

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide.  A transplant program’s medical team will address issues such as:

  • Will a transplant effectively treat his or her disease?
  • Does this person have other medical conditions that would complicate his or her care?
  • Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.?  Does he or she have family or caregiver support to assist if needed?
  • Does this person qualify for insurance for transplant costs?  If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment.  If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN.  The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing.  While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status.  If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate.  UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation.  While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

  • identifying potential donors
  • documenting donation consent
  • collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
  • entering donor information and organs available for matching into the OPTN database
  • assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process).  For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure.  The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death.  The next of kin must agree that death is imminent and that they will agree to end supportive care.  Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted.  Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital.  The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it.  It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital.  If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used.  Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center.  Kidneys have the longest preservation time (commonly up to 36 hours from recovery).  If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer.  The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list.  This displays which potential recipient is to be offered each organ in sequence.  Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer.  This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer.  If the organ is accepted, arrangements are made for recovery and transportation.  If the transplant program declines the offer, it will note a refusal reason back to UNOS.  The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors.  These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system.  Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles.  One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need.  The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward.  The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

  • how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
  • (for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
  • the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
  • if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation.  We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

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You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

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