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Why Prescriptions Cost So Much and What You Can Do About It


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A couple of weeks ago the news was filled with stories about Martin Shkreli the CEO of Turing Pharmaceuticals, a relatively small drug manufacturer. Some media branded him with this headline world's biggest a holebecause he raised the price for one pill of Daraprim, a 62 year old drug,
from $13.50 to $750. That’s about 5,000 percent. Now, he says he will lower the price, but there’s no indication of how much or, as of this writing, when (According to Web MD Daraprim is used with other medication (such as a sulfonamide) to treat a serious parasite infection (toxoplasmosis) of the body, brain, or eye or to prevent toxoplasmosis infection in people with HIV infection).

As it turns out, though, the “World’s Biggest A–Hole case is not in the least bit unusual, it happens with pharmaceutical companies with great regularity as a tactic to increase profits on older drugs, drugs that have long since paid for themselves.

The global market for pharmaceuticals topped $1 trillion in sales in 2014. The world’s 10 largest drug companies generated $429.4 billion of that revenue. Five of these companies are headquartered in the U.S. They are: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck and Eli Lilly.

Johnson and Johnson, America’s biggest pharmaceutical manufacturer raised prices on over 130 brand name products this year alone. Merck & Co. raised the price of 38 drugs. The increases in the U.S. have added over a billion dollars of revenue in the last three years. So, while Mr. Shkreli may get the award for being the biggest you know what, he is in good company — only the others were smart enough not to brag about it.

Before I go on it is important to point out that my interest in the topic is both personal and professional. I 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.

In Europe, Asia, Australia and anywhere else with some form of socialized medicine strict government regulation helps prevent those kinds of actions and subsequently keeps prices down. Things are a whole lot looser in the U.S.

In 2013 each of us spent over $1,000 on prescription drugs. That works out to $429 billion. In case that figure boggles your mind, let me boggle it more by showing you what it looks like in black and white — $429,000,000,000. By anyone’s measure that’s a lot of money. To put it all in perspective Prescription medications make up close to 10 percent of the $2.9 trillion annual total spent on healthcare in the U.S.

Americans spend more on drugs than any other country in the world and – we also pay more for them than any other country.

big pharmaBefore we go into detail on why prescription drugs cost more here than anywhere else, let’s look at the biggest drug and biotech companies in the world. They account for more than a third of the industry’s total market share according to the World Health Organization. We won’t go into detail but here’s the top ten and their 2014 revenue.

  • Gilead Sciences $24.474 billion.
  • Bayer $25.47 billion.
  • AstraZeneca $26.095 billion.
  • GlaxoSmithKline $37.96 billion.
  • Merck’$42.237 billion.
  • Sanofi $43.07 billion.
  • Pfizer 49.605 billion.
  • Roche $49.86 billion.
  • Johnson & Johnson $74.331 billion.

If you were to ask any of those companies why prescription drugs cost so much they would likely tell you that the price reflects the immense costs of research and development. They would explain that it costs millions andcosts millions of dollars to develop a new drug and then millions more to get through animal and human studies and FDA approval, and that’s partially true. Partially. Those costs are very high, but what big pharma won’t tell you is that you are also paying for the costs of marketing the drug to physicians and patients and those costs dwarf the research and development expense. http://tinyurl.com/pr23j3q

The world’s largest pharma company, Johnson & Johnson, spent $17.5 billion on sales and marketing in 2013, compared with $8.2 billion for R&D. Most of that marketing effort is aimed directly at physicians, the people who write the prescriptions, rather than customers like you and me. It should be noted that the U.S. and New Zealand are the only two countries that allow any form of advertising for prescription drugs.

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. At the risk of being accused of repetitiveness I must say again. We pay significantly more than any other country for the exact same drugs. United States spends more than $1,000 per person per year on pharmaceuticals. 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 why is that?

Well, first the U.S. is a very rich and therefore lucrative market because we use more medicine than any other developed country. We account for 35 percent of the world market for pharmaceuticals. Americans have become quite accustomed to leaving their doctor’s office with a handful of prescriptions.

Due to our ill health and our wealth, companies often choose the U.S. in which to launch new products. And, because the US market is so big and profitable, investments in research and development have long been steered towards meeting clinical needs.

But if we Americans take more prescription drugs, we also pay an arm and a leg more for them. Why? Because other countries have tough regulations about pharmaceutical prices and they set reimbursement limits. MedicareAnother smart thing they do is to agree to pay for a drug only if the price is justified by the medical benefits. In the U.S., Medicare which is the world’s largest buyer of prescription drugs is prohibited from negotiating prices with drug companies. If the company says that a pill is $100, Medicare has no choice, but to pay it if the patient needs it. They have no wiggle room and that costs taxpayers billions of dollars a year in a direct giveaway to the pharmaceutical behemoths and speaks to the power of their lobbyists.

Speaking of lobbyists, here’s the real rub. The pharmacy industry views congress as a place to invest against future price controls and this is what really adds to the price of your prescriptions.

Big Pharma Spends More on Lobbying Than Anyone
lobbyistsSince 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.

Now here’s how it works for you and me. In the U.S. insurers only accept the price set by the drug makers. If the drug is exclusive, meaning there is no competing medication from other companies. Insurers then cover the total cost by forcing a higher co-pay on patients. Unlike Medicare, insurers have bargaining power when there are competing drugs and therefore can reduce the co-pays.

generic drugs1Then, there is the Generic drug market, those are drugs in which the patent has run out and other manufacturers are allowed to produce the product. As an example the antidepressant Remeron is also known by its generic name Mirtazapine. Remeron is the brand name given it by the original manufacturer, but Mirtazapine can be made and distributed by any pharma company and sold for a much lower price.

Competition in that area is fierce and generic drug prices are usually low. Today generics account for about 85 percent of drugs dispensed in the U.S.

Despite generics and their low prices, there are still many Americans who daily make the choice between food or drugs, between paying the rent and drugs or giving up some other type of health care in order to afford the drugs that keep them going. Many Americans don’t take their recommended prescriptions because they can’t afford them. One recent survey showed that about one in five U.S. adults did not fill their prescription or skipped doses due to cost as opposed to Australia and some other countries where the ratio is one in ten. http://tinyurl.com/pejvoyn

Some people have turned to foreign sources for their prescriptions and advairthere are many with some of the more popular ones thriving in Canada. Here’s an example of the savings that can be had. If you want a three month supply of the popular asthma inhaler Advair it will likely cost you somewhere in the neighborhood of $600 to purchase it from one of your local pharmacies. If you select one of the Canadian pharmacies you can import the same three month supply of the same medication, Advair, for about $150, with shipping included. That amount may not mean much to the Donald Trump tax bracket, but to average Americans it’s a whole lot of money. Advair is just the tip of the iceberg. ABC news reports the following price comparisons:

  • Mirapex, for Parkinson’s disease: $157 in Canada vs. $263 in the United States.
  • Celexa, for depression: $149 in Canada vs. $253 in the United States.
  • Diovan, for high blood pressure: $149 in Canada vs. $253 in the United States.
  • Oxazepam, for insomnia: $13 in Canada vs. $70 in the United States.
  • Seroquel, for insomnia: $33 in Canada vs. $124 in the United States.

Tufts University in Boston released a study in the year 2000 that placed the cost of approval for a single drug at $802 million, and that was fifteen years ago. To be fair it must be revealed that the dollar amount adds in each successful drug’s prorated share of failures (only one out of fifty drugs eventually reaches the market), but that still does not explain why the retail price is higher here than anywhere else.

The only logical explanation I can come up after some a fair amount of research is that pharmaceutical companies can get away with much higher prices in the U.S. and they can’t elsewhere. Period!

So what are your options, what can average patients who have difficulty Optionaffording some drugs do to stay healthy and be able to eat and pay their rent and other bills at the same time?

Well, there are several steps you can take. Among them are:

  • Contact state and federal legislators and ask them to allow Medicare to negotiate the price of prescription drugs
  • Also ask them to allow importing of essential drugs from foreign companies through approved pharmacies.
  • Ask big pharma companies to see if you qualify for their reduced prices for people who have trouble affording them.
  • Read the Consumers Report story on the issue. It will give you the information you need to identify trustworthy pharmacies. http://tinyurl.com/qbflucm

But, if you are like me you want even more detail. Ok. Here’s the best I can do.

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#/  orhttp://www.goodrx.com/ All you have 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 in price from $526.00 at Wall Mart to $584 at Target. If you are a heart patient and take Carvedilol in my neighborhood it ranges from $4.00 at Wal Mart 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 savecouponmoney 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 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 CR tips.
  • Request the lowest price. Our analysis showed that shoppers didn’t always receive the lowest
    available 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.
  • 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.
  • Get a refill for 90 days, not 30 days. Most pharmacies offer discounts on a three-month supply.
  • Consider paying retail. At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
  • 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.)
  • Experts say that although the low costs could entice you to get your prescriptions filled at multiple pharmacies, research indicates that 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.

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bob half of bob and jay photoBob 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.

 

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.

Supremes Say You Can’t Sue Generic Drug Makers But FDA May Change That


On June 24, 2-13 the U.S. Supreme Court, in a 5-4 decision ruled that generic drug manufacturers are not liable for the design of the drugs. supreme court That means if their drugs make you sick you can’t sue them. gavel on money One could easily believe that’s like saying that a Jet passenger airliner that was approved as safe by the FAA in the 1960’s is immune from all law suits even if in ensuing years it was proven that stress fractures caused engines to fall off and planes to crash killing hundreds— but I am getting ahead of myself and besides a ruling by the Food and Drug Administration (FDA) could change all that.  Confused?  Read on.

Before we get to the decision it is important to understand just what a generic drug is and how it becomes one.  When a new, FDA-approved drug goes on the market, it may have patent or other protection that enables the manufacturer to sell the drug exclusively for a period of time. When those protections expire other companies can make it in generic form but the FDA must approve the generic drug before it can be marketed.FDA approved drug

For a generic drug to be approved by FDA, its manufacturer must show that it is “equivalent” to the innovator drug (brand name). This means that to gain FDA approval, a generic drug must:

  • Contain the same active ingredients as the innovator drug. Active ingredients make the drug effective against the disease or condition it is treating.
  • Come in the same dosage form. If the brand name is a capsule, the generic should be a capsule, too.
  • Be administered the same way. If the brand name is taken orally, the generic should be taken orally, too.
  • Be identical in strength
  • Have the same conditions of use
  • Be bioequivalent (an equal rate and extent of drug absorbed in the bloodstream)
  • Meet the same standards for identity, strength, purity and quality
  • Be manufactured under the same standards that FDA requires for the manufacture of innovator products

As I researched this story I found that the FDA encourages people to notify them of side effects or reactions to these generic drugs.  I found little or no information that suggested how or even if the FDA acted upon public complaints so conceivably there could be a great number of complaints about an adverse effect  but if the FDA takes no formal action the Generic manufacturer has no obligation to issue any warnings or reformulate the drug…which leads us to today’s supreme court ruling.

In a dissenting opinion, Justice Sonia Sotomayor said a decision by the F.D.A. to approve a drug should not absolve a company of its responsibility to sell a safe product.

“Manufacturers regularly take drugs off the market when evidence emerges about a drug’s risks, particularly when safer drugs that provide the same therapeutic benefits are available,” she wrote in her dissent, which was joined by Justice Ruth Bader Ginsburg. Justice Stephen G. Breyer wrote a separate dissent, which was joined by Justice Elena Kagan.

Some have called on Congress and the F.D.A. to make generic drug companies more accountable by permitting them to change their warning labels when they become aware of a safety risk. Brand-name companies can already do so. Such a change would, presumably, allow the generic manufacturers to be sued again. FDA sign

Generic drug makers now have a responsibility to mirror the safety label of the brand-name company and to alert the F.D.A. whenever they learn of an adverse event related to their products. It is then up to the agency to decide whether to change the label.

Critics have said the current system works too slowly, and does not account for situations when problems arise with a drug after the brand-name manufacturer has left the market.

The consumer advocacy group Public Citizen released a report Monday that found 11 instances over the last five years in which serious safety warnings were added to the labels of drugs for which there were no longer any brand-name versions on the market.

This situation “poses a threat to the safety of prescription drugs, creating unnecessary risks to patients,” Dr. Michael Carome, director of the Health Research Group at Public Citizen, said in a statement Monday.

But now a new twist.

The June action by the supreme  court slashed the right of individuals to sue for damages when injured by generic drug makers…..but an action by the Food and Drug Administration might change that.   The Times Katie Thomas reported this good news yesterday:

Consumer advocates applauded the development, calling it a necessary fix for a system that they say is unfair to patients who take generic medicines. FDA logo

“It’s common sense,” said Dr. Sidney M. Wolfe, a senior adviser to the Health Research Group at Public Citizen, which in 2011 petitioned the F.D.A. to pass just such a rule. “It will obviously end this situation where people are being harmed physically and yet, although they are harmed, they have no right to go into court and get redress for serious damages.”

Dozens of lawsuits against generic drug manufacturers have been dismissed since 2011, when the Supreme Court ruled that because the generic companies must, by law, use the same label warnings as their brand name counterparts they cannot be sued for failing to alert patients about the risks of taking their drugs. Last month, the Supreme Court ruled — on similar grounds — that patients also may not sue generic drug makers by claiming that the drug was defectively designed.

Have we heard the last of this issue? No way.  The pharmaceutical industry has billions to spend to defend itself and to launch massive PR campaigns.  They’ve done it in the past and you can bet the will do it again.  Stay tuned. 

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.

 

 

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.

Post-Transplant Depression — What It Is and What To Do.


This is a compilation of information from various sources.  It does not constitute medical advice.  Please consult your physician about your condition and base your treatment decision on his or her advice, not on what you read here.

Post-transplant depression is real.  There are no statistics of which I am aware that indicate the percentage of organ recipients that suffer from the malady but there are enough reports of the problem to suggest it is no small number.

The extent to which your emotional health is affected by a transplant depends on a complex interplay of your health status and personality, genetic factors, social support, financial situation, and other concerns.

For most people, emotions about their experience change and evolve over time. Typically, feelings of sadness or anxiety are transient. For some, however, these feelings may persist and interfere with daily life.

According to the Mayo Clinic Depression is more than just a bout of the blues.  It isn’t a weakness, nor is it something that you can simply “snap out” of. Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure. http://www.mayoclinic.com/health/depression/DS00175

Depression is a complex disease and sometimes it is difficult if not impossible to find a reason for the problem.  One that I hear most often is guilt.  Some recipients feel guilt because, they say, someone had to die in order for them to live. Others feel guilt because they are doing well while other transplant recipients may not be so fortunate.  Those feelings sometimes proves to be a very heavy burden for many transplant recipients but it may be only one potential cause of their feelings. There are some other factors that may contribute to post transplant depression as well:

  • Anger or depression, because they don’t feel better as soon as they expected.
  • Frustration, because of chronic or lingering fatigue that keeps them from things they want to do or accomplish.
  • Mood changes caused by the drugs that must be taken following a transplant.
  • Dissatisfaction with old plans and goals. Identifying new priorities and making lifestyle changes may feel good, but can also be stressful.
  • Fear that the old illness might return and affect the new organ

Symptoms of depression include:

  • Persistent sad, anxious, or “empty” feelings
  • Feelings of hopelessness or pessimism
  • Feelings of guilt, worthlessness, or helplessness
  • Irritability, restlessness
  • Loss of interest in activities or hobbies once pleasurable, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, early-morning wakefulness, or excessive sleeping
  • Overeating, or appetite loss
  • Thoughts of suicide, suicide attempts
  • Aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment.

Despite the feelings of gloom and doom, though, there is reason to be optimistic because most people with depression will eventually  feel better with medication, psychological counseling or other treatment.

Still another reason for post-transplant depression is Post Traumatic Stress Disorder (PTSD).  Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.  Obviously getting an organ transplant falls into that definition. http://health.nytimes.com/health/guides/disease/post-traumatic-stress-disorder/overview.html

Symptoms of PTSD fall into three main categories:

1. “Reliving” the event, which upsets day-to-day activity

  • Flashback episodes, where you re-live the event so it seems to be happening again and again
  • Repeated traumatic memories of the event
  • Frequent nightmares of the event
  • Strong, uncomfortable reactions to reminders of the situation

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feeling detached
  • Being unable to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Hiding your moods
  • Avoiding places, people, thoughts or things that remind you of the trauma
  • Feeling as though you have no future

3. Arousal

  • Difficulty concentrating
  • Startling easily
  • An exaggerated response to things that startle you
  • Feeling more aware of negative things
  • Irritability and angry outbursts
  • Difficulty falling or staying asleep

If you have severe depression, a doctor, loved one or guardian may need to guide your care until you’re well enough to participate in decision making. You may need a hospital stay, or you may need to participate in an outpatient treatment program until your symptoms improve. http://www.mayoclinic.com/health/depression/DS00175/DSECTION=treatments-and-drugs

Here’s a closer look at your depression treatment options.

Medications
A number of antidepressant medications are available to treat depression. There are several different types of antidepressants. Antidepressants are generally categorized by how they affect the naturally occurring chemicals in your brain to change your mood. You can view the entire section on medications by following the above link to the Mayo clinic.

Types of antidepressants include:

  • Selective serotonin reuptake inhibitors (SSRIs). These medications are safer and generally cause fewer bothersome side effects than do other types of antidepressants. SSRIs include fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), citalopram (Celexa) and escitalopram (Lexapro). The most common side effects include decreased sexual desire and delayed orgasm.
  • Serotonin and norepinephrine reuptake inhibitors (SNRIs). These medications include duloxetine (Cymbalta), venlafaxine (Effexor XR) and desvenlafaxine (Pristiq). Side effects are similar to those caused by SSRIs.
  • Norepinephrine and dopamine reuptake inhibitors (NDRIs). Bupropion (Wellbutrin) falls into this category. It’s one of the few antidepressants that doesn’t cause sexual side effects.
  • Atypical antidepressants. These medications are called atypical because they don’t fit neatly into another antidepressant category. They include trazodone (Oleptro) and mirtazapine (Remeron). Both of these antidepressants are sedating and are usually taken in the evening. In some cases, one of these medications is added to other antidepressants to help with sleep. The newest medication in this class of drugs is vilazodone (Viibryd).
  • Tricyclic antidepressants. These antidepressants have been used for years and are generally as effective as newer medications. But because they tend to have more numerous and more-severe side effects, a tricyclic antidepressant generally isn’t prescribed unless you’ve tried an SSRI first without an improvement in your depression.
  • Monoamine oxidase inhibitors (MAOIs). MAOIs — such as tranylcypromine (Parnate) and phenelzine (Nardil) — are usually prescribed as a last resort, when other medications haven’t worked. That’s because MAOIs can have serious harmful side effects. They require a strict diet because of dangerous (or even deadly) interactions with foods, such as certain cheeses, pickles and wines, and some medications including decongestants. Selegiline (Emsam) is a newer MAOI that you stick on your skin as a patch rather than swallowing. It may cause fewer side effects than other MAOIs.
  • Other medication strategies. Your doctor may suggest other medications to treat your depression. These may include stimulants, mood-stabilizing medications, anti-anxiety medications or antipsychotic medications. In some cases, your doctor may recommend combining two or more antidepressants or other medications for better effect. This strategy is known as augmentation.

Finding the right medication
everyone’s different, so finding the right medication or medications for you will likely take some trial and error. This requires patience, as some medications need eight weeks or longer to take full effect and for side effects to ease as your body adjusts. If you have bothersome side effects, don’t stop taking an antidepressant without talking to your doctor first.

Antidepressants and pregnancy
If you’re pregnant or breast-feeding, some antidepressants may pose an increased health risk to your unborn child or nursing child. Talk to your doctor if you become pregnant or are planning on becoming pregnant.

Antidepressants and increased suicide risk
Although most antidepressants are generally safe, be careful when taking them. The Food and Drug Administration (FDA) now requires that all antidepressant medications carry black box warnings. These are the strictest warnings that the FDA can issue for prescription medications.

The antidepressant warnings note that in some cases, children, adolescents and young adults under 25 may have an increase in suicidal thoughts or behavior when taking antidepressants, especially in the first few weeks after starting an antidepressant or when the dose is changed. Because of this risk, people in these age groups must be closely monitored by loved ones, caregivers and health care providers while taking antidepressants. If you — or someone you know — have suicidal thoughts when taking an antidepressant, immediately contact your doctor or get emergency help.

Psychotherapy
Psychological counseling is another key depression treatment. Psychotherapy is a general term for a way of treating depression by talking about your condition and related issues with a mental health provider.

Through these talk sessions, you learn about the causes of depression so that you can better understand it. You also learn how to identify and make changes in unhealthy behavior or thoughts, explore relationships and experiences, find better ways to cope and solve problems, and set realistic goals for your life.

Hospitalization and residential treatment programs
In some people, depression is so severe that a hospital stay is needed. Inpatient hospitalization may be necessary if you aren’t able to care for yourself properly or when you’re in immediate danger of harming yourself or someone else. Getting psychiatric treatment at a hospital can help keep you calm and safe until your mood improves.

In this blog we have attempted to give you an overview of depression and its causes along with known effective treatment options.  Please remember, this is only a blog, it is not medical advice and we strongly suggest that you take no action based on what you read here.  See a qualified physician, ask a lot of questions and then make a decision.

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.

“His” Heart, My Life, My Story


I wrote this account of my life since receiving a heart transplant in hopes that others will benefit from my experiences.  Most of you who will have transplants will have a far easier time of it than I did.  You must remember that I was 68 years old when I had mine and that alone can make a huge difference in recovery time and other factors as well.  If any of you have any questions after reading this please contact me personally at bob@baronson.org.

Being a transplant recipient is an amazing experience.  I simply cannot describe what the feeling is like knowing that one of the parts you were born has been discarded and replaced with one belonging to someone else who in all likelihood died…except for the organ that is keeping you alive.

I don’t know who my donor was.  I only know he was about 30 years old when he died and he was from South Carolina.  I have written to my donor family but not heard from them so I assume they prefer to remain anonymous and I understand and accept that.

Everyone who has ever had a transplant has had a unique experience that nothing else in life can match.  Each day I am struck by the awareness that the heart I was born with, that kept me alive for 68 years no longer beats within my chest.  It died.  I didn’t.  Wow!

Often when I lie in bed I feel the rhythmic thumping that kept someone else alive for 30 years is now doing the same for me.  “His” heart is my life.  “His” heart pumps my blood, in my body to my brain and allows me to think, to live, love and enjoy life. “His” heart, not mine.

My donor has given me a lot but his greatest gift is allowing me the extra time to be with my wonderful wife Robin.

In 1995 after collapsing in a parking ramp am rushed to a hospital, I was diagnosed with dilated idiopathic cardiomyopathy and was told that someday I might need a heart transplant.  As the owner of a communications consulting business I was very active and travelled a great deal both domestically and internationally, but slowly my health began to deteriorate.  Always the optimist I adjusted and slowed down a little but not so anyone would really notice.

Then in 1996 my wife was diagnosed with lung cancer and I ignored my condition while we dealt with hers which included many chemotherapy and radiation sessions.  After a long and courageous battle with that terrible disease she succumbed in November of 1998.  We had been married for 35 years.  It was a devastating time and at age 59 I felt lost, alone and without hope as I began to feel the effects of my own condition.

About a year later I met Robin Diffie and as we got to know each other I felt my life just might come back together after all, but my version of the sword of Damocles, cardiomyopathy, continued its swing through my life as my heart function continued to fall with a resultant decrease in my ability to function.

In 2000 Robin and I were married in Eagan, Minnesota but by then the condition which would later require a heart transplant was becoming debilitating, when I travelled I began to ask for wheelchair service in airports and Robin began traveling with me to make sure I got one and to act as my “pusher.”

Cardiomyopathy kind of sneaks up on you and kicks your butt softly at first but then harder and harder.  The effect of the disease is measured by ones “Ejection Fraction” (EF).  A normal heart will pump out about 60% of the blood it contains every time it beats.  As the disease progresses the EF keeps going down and the heart enlarges in order to store the blood that doesn’t’ get ejected.  My heart was getting very large and by 2006 my EF was around 10% and decreasing.  Clearly I was dying and too sick to work.  Sometimes I could barely walk a few feet without having to stop to rest.  My heart was just barely pumping enough blood to keep me alive.  Reluctantly I made the decision to retire.

It was then that we decided to move to Jacksonville, Florida and we did so for two reasons.  1) Moving there offered the greatest likelihood of getting a heart.  My research indicated that the Mayo Clinic in Jacksonville had a wonderful record in organ procurement and transplantation.  2) It was an easy decision because Jacksonville is Robin’s home town and her entire family is there.  I still question Robin’s sanity in marrying a dying man but no matter I am grateful for whatever bug struck her and caused the instability.

After undergoing the battery of tests that are required to qualify for a transplant, I was finally approved and placed on the national list on August 8th of 2007.  I had resigned myself to either a very long wait or, I thought, no heart at all because of my age.  It had already been twelve very long years since I was diagnosed with a fatal heart disease.  I thought that at age 68 it was unlikely that I would get a heart and if I did it wouldn’t be anytime soon — but I got lucky.

Only 13 days after being listed I got the call from Mayo Clinic Transplant Cardiologist Dr. Jeffrey Hosenpud that he “might” have a heart for me.  He did.  I got one and August 21st 2007 goes down in history as my “other” birthday.

My recovery from the transplant was difficult to say the least.  It took four years before I finally felt good again.  I quit smoking in 1991 but the 37 year habit had already taken its toll, I had Chronic Obstructive Pulmonary Disease (COPD).  That’s a disease of the lungs that can best be described as feeling as though you are breathing through a straw…try that some time.  COPD is bad enough but when you get pneumonia on top of it you have another life threatening situation.  Well, I got pneumonia shortly after my surgery and was hospitalized again but the recovery was very slow and touch and go before I slowly regained my strength.  I now know that another bout with pneumonia could kill me so I try to be pretty careful about what I expose myself to.

I no sooner recovered from the pneumonia virus than I was stricken with indescribable absolutely excruciating pain….pain so severe that sometimes I would just sit and cry. Part of the pain, I’m told, was the result of the way I was positioned during my surgery.  Apparently your left arm is in a strange position in order to allow the surgeon unobstructed access to the chest cavity, but a transplant takes a long time and it seems that my arm needed different medical attention than was delivered.

The pain in my left arm right down to my wrist and fingers was awful but then just when I thought it couldn’t get worse, it did.  The pain spread to both shoulders, my neck and lower back for and went on for months.  Torn rotator cuffs were part of the reason but much of the pain came from unknown causes, perhaps it was the way I was sleeping or  maybe the lack of proper exercise and maybe because of an old auto accident.  We’ll never know the exact cause but it was finally resolved with a combination of physical therapy and Oxycontin the potent, addictive pain killer, and addictive it was.

I’ve been a recovering alcoholic since 1982.  I understand addiction and I understood quite well that I had become dependent on the narcotic.  I no longer really needed it for the pain for which it was prescribed, I needed it for the pain caused by the withdrawal you experience between “hits.”  When you are taking pain killers there’s a simple question you must ask yourself every time you reach for a pill.  “Am I taking this because I need it for pain or am I taking it because I want it?”  If you are truthful with yourself and the answer is the latter, you have a problem.  I had a problem.  By addict standards I wasn’t taking much Oxycontin, only about 30-40 milligrams a day, but it was enough for me to know I needed the drug, needed it not to get high…I needed it to feel normal.  That’s what happens to every drunk and junkie…they ultimately drink, shoot or take pills just to try to feel normal.  Often the first high you have, is the last one.

Having been through chemical dependency treatment in 1982 I knew what I had to do but I also knew I couldn’t do it cold turkey.  I found a highly reputable pain clinic that specialized in addiction and started going there.  They immediately took me off of Oxycontin and put me on Suboxone another addictive drug but one that is used to slowly help people through the painful withdrawal that comes with quitting.  It took several months but it worked and I was Oxycontin free but, sorry, the story doesn’t end there.

You’d think that after having survived cardiomyopathy, getting a heart transplant, beating terrible pain and withdrawing from an addictive drug I would finally feel better.  Unfortunately the light at the end of my tunnel was an oncoming train that hit me hard and almost had me down for the count because for no explainable reason I fell into a deep, dark depression that lasted for a couple of years.

Each day I would awaken, head to my favorite recliner in a corner of the den and sit there in the dark drinking coffee and watching TV.  I was nearly a zombie.  Some days I wouldn’t even shower and I didn’t want to see or talk to anyone.  That was my life day after day, week after week for a couple of years.   Depression is one of those diseases where you don’t know how bad off you are until you are no longer bad off.  The only thing that gave me any hope each day was maintaining my presence on the Facebook group I started, Organ Transplant Initiative and my blog on WordPress, Bob’s Newheart.  While I knew I needed professional help I was so depressed I didn’t’ care if I got it so I kept putting it off.  Finally with Robin’s gentle prodding I went back to Mayo and began treatment but you don’t beat depression overnight or even in a few months.  Sometimes it takes a considerable amount of trial and error before the right treatment is found.  That came right around my four year post surgery mark but not until i had lost 75 pounds from lack of appetite.  i was left weak but finally energized and optimistic again.

Through all of that Robin, the lunatic who married a dying man, was steady as a rock. She had her hands full running two businesses and our home plus being my caregiver.  I’ll never know how she did it and kept her wits about her but she never flinched.  She is the most amazing, compassionate and competent human being I have ever encountered.  She is an unflappable optimist who doesn’t have a selfish bone in her body.  I don’t know why I was so blessed to find this woman but  as the man said, “Somebody up there likes me.”

That takes us to today…five plus years later and I feel wonderful but most importantly I get to spend time with Robin.  If a physician could have written a prescription for love, happiness and contentment it would simply have said, “Robin.”  It is only because of my donor that I am getting to spend time with this wonderful, gracious, smart, talented, funny and super woman.  The heart of a stranger has allowed us to really get to know each other.  There is no greater gift my donor could have given me and yes, that’s selfish but in this case I think selfish is OK.

Like many recipients my life has changed in other ways as well.  Because of a transplant I’m a different person.  I hope I’m a better person.  I know I appreciate life a great deal more than I ever did before, but it is not only my life I appreciate, it is everyone’s life.  When you experience death or near death, “life” takes on a whole new meaning.  My reaction to being a transplant recipient is that I owe my donor big time.  While I can’t do anything for him directly I can honor his memory by doing everything in my power to help others live.  That’s why I am such an outspoken donation/transplantation activist.

While science generally rejects the notion, some recipients feel they have taken on some of the characteristics of their donor.  I can’t say what my donor’s characteristics were because I didn’t know him but my life has changed as a result of having his heart.  He may well be the influence behind some of the changes I have experienced which include:

  • I am much less selfish than I was before and spend as much time as I can trying to help others.
  • I am much less concerned with material things than I used to be.  “Appearances” aren’t important anymore.  I don’t have to have a new car, wear the best clothes or get recognition.  I simply don’t care about those things.
  • I am far more passionate about causes I believe in like fairness, equality and justice.  I particularly feel a need to help the economically disadvantaged, the disabled, the sick, the elderly and, of course — children who suffer so many indignities of which they should not even be aware, never mind being forced to experience them.
  • I am more of a peacemaker.  In the past I was a warrior, a bulldozer who when advocating for a cause would show my commitment by rolling over those who disagreed and sometimes belittling them in the process.  Now I believe in finding common ground and forming friendships despite serious disagreements.
  • I am much less self-centered than I used to be.  I have come to accept who I am and as a result can concentrate on the needs of others.
  • I have always enjoyed learning but it has almost become an obsession since my transplant.  My thirst for knowledge about a wide variety of things knows no bounds.  I can’t get enough information about the wonders around us like the sun and the stars and the miracles, medical and otherwise that we experience every day.
  • Working with my hands has always been enjoyable for me but since my transplant I have become addicted to woodwork.  I’m not the Michelangelo of woodworking, hell I’m not even a Barney Fife but I am determined to get better at it.  Unfortunately it is my friends and family who must suffer receiving my woodworking “gifts” and then acting as though they like them.

Being a transplant recipient is an amazing experience.  It is one of which I am always aware and I mean always that I have someone else’ heart.  There is no time in my waking hours that I am not aware that I am alive because a generous stranger give me his heart.  I owe him and his family more than I could ever repay no matter what efforts I make for the rest of my life.

If you, the reader, are an organ donor, let me thank you on behalf of the unknown lives you may save as a result of your selfless action.  If you are not an organ donor, please consider it carefully.  You can save or enhance the lives of up to 60 people just by signing up and you can do that so easily.  Just go to www.donatelife.net and follow the directions.  Then, tell your family what you’ve done so there is no chance that anyone will object when the time comes to fulfill your commitment.

Earlier in this story I mentioned my Facebook Group and Blog. Let me take just a moment to explain how they came to be.  Just a couple of months after my transplant I got a call from Mayo asking if I’d be interested in starting a Facebook Organ donation group and in writing a blog.  I knew what neither were but decided I needed something to do during my recuperation and said, “Yes.”  With Mayo’s help I got started immediately.

That was the beginning or Facebook’s Organ Transplant Initiative group (OTI) and Bob’s Newheart blog on WordPress www.bobsnewheart.wordpress.com .  OTI now has almost 2,500 members and I’ve posted 140 blogs on donation/transplantation issues that have been read by over 100,000 people in at least 20 countries.  I believe that I was given my new heart to do this and it has become my new passion.

None of this would be possible without all you wonderful people who helped to make OTI a success and who read my “Stuff” on WordPress.  By offering your kind words, thoughts and deeds you are doing a great service to those who suffer while waiting for organs and those who are recovering from receiving them, never mind the caregivers and others who are so critical to the donation/transplantation process.  Words cannot express my fondness for all of you and my gratitude for your involvement.  All I can say is, thank you from the bottom of my donor’s heart.

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.

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.

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

-0-

After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

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.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

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.

Election 2012 — Senior Citizen Transplants & Healthcare Coverage to Diminish


This is a presidential election year and because of the debate over Medicare, Obamacare and the federal deficit Senior Citizens had better sit up and take notice.  Regardless of who wins big changes are in store that will affect the lives of current and future senior citizens.  While this blog usually confines itself to organ donation/transplantation issues the all-encompassing nature of the healthcare debate caused us to broaden our perspective. From our vantage point this is how the Medicare/Obamacare/deficit debate shakes out.

When it comes to health care in America we have the known (Medicare as it currently stands and the Affordable Care Act or “Obamacare) and we have the unknown (Romney/Ryan – roughly outlined plan)

Here’s what we know we have now and what we can expect.

  • If you are 65 years old and need an organ transplant Medicare will pay 80% of the cost (your supplemental will pick up the rest) and will pay the full cost of all of your ant- rejection drugs as long as you live.
  • If you are officially disabled, regardless of age, Medicare will offer the same transplant and anti-rejection coverage.
  • If you are under 65 but suffer from Kidney Disease Medicare will cover 80% of the cost of a transplant and will fully cover anti-rejection drugs for 36 months.  Medicare will also cover the cost of dialysis until you get a transplant
  • If you qualify Medicaid, which is mostly federally funded but state run, will cover transplants and the cost of medication but with recent cuts many people will not qualify for transplants.
  • Under “Obamacare” If you are covered by Medicare Part D (that’s prescription coverage) your costs will keep going down until they disappear almost completely in 8 years (2020) that’s when the donut hole closes.
  • 14.3 million Senior citizens in America have already received important preventive benefits under The Affordable Care Act including an annual checkup, without paying any deductibles or co-pays. Also millions of Americans are getting cancer screenings, mammograms, and other preventive services at no charge, but the status quo cannot last.  Even if Medicare/Obamacare survives it will have to change, there will be cuts because the cost of providing care is just too high.  Changes could include a later starting date for Medicare to age 66 or 67; more limited coverage; lowering coverage from 80 to 70%; higher premiums; fewer drugs covered under Part D to name just a few.
  • Still unknown is what change will be made in organ allocation policy.  Under consideration is a measure that would allocate organs by potential long term survivability. That simply means that age will become more of a factor.  Under this practice younger organs would go to younger people because both the organs and the recipient have longer expected life spans.  For example, if an organ came from someone who was 40 years old it might be expected that it would survive another 25 years.  If a potential recipient was 65 and had an expected life span of 75 the available organ might instead go to someone younger, even though the younger person might not be as sick.  A very tough ethical question being asked in light of the on-going organ shortage.

Romney/Ryan are promising to “Change the system for the better.” Unfortunately we don’t know what that is.  What we do know is that both men have committed to repealing the Affordable Care Act.  If they do that, the donut hole will open again, maybe bigger than ever, preventive services will disappear and many senior citizens may be faced with making horrible choices like, eating instead of taking medications.

The GOP ticket is also committed to further spending cuts and if past performance is an indication Medicaid will get cut again, which may mean that there will be few if any Medicaid financed organ transplants.

While neither of the GOP team has said a word about Transplant coverage one certainly gets the feeling that everything to do with health care is on the table.  Here’s the Romney plan according to the Los Angeles Times.

“Romney has said he would waive as much of the 2010 law as he could through his authority as president, and push Congress to repeal the rest. In its place, he would seek a premium-support system like the one Ryan proposed for those becoming eligible for Medicare in 2022 and beyond. Private insurers would compete with Medicare in a new marketplace, or exchange, with each offering coverage roughly equivalent to what Medicare offers. Instead of offering seniors Medicare coverage, the government would provide an insurance subsidy equal to the second-least-expensive offering in the exchange. Seniors who didn’t want that particular coverage could use the subsidy to buy the less expensive insurance and keep the change, or sign up for more expensive coverage and pay the difference out of pocket.”  http://tinyurl.com/8jl5xpb

A new report, (August 24, 2012) from the Center for American Progress finds that the Romney/Ryan proposal to transform Medicare’s guaranteed benefit into a “premium support” structure for future retirees could increase costs by almost $60,000 for seniors reaching the age of 65 in 2023. http://tinyurl.com/9rh2pyo  The Romney/Ryan campaign says this report is inaccurate.

Here’s what bothers me about the Romney/Ryan plan.  It turns nearly everything over to the private sector which, when combined with the Republican penchant for de-regulation, threatens the elderly with minimal coverage for maximum cost for a minimum of people.

Perhaps Romney/Ryan will come up with a more detailed proposal that will offer more certainty, but this sounds too much like a dismantling of Medicare with the result being that seniors will just buy insurance in the private marketplace like everyone else.  Most importantly, though, it appears that Obamacare offers a more certain possibility of organ transplant coverage than does Romney/Ryan which makes no mention of the procedure.  Additionally, if the Affordable Care Act is repealed, pre-existing conditions will return which would automatically rule out anyone who needs a transplant.  And…along those same lines, I can’t think of a single senior citizen who doesn’t have at least one pre-existing condition that would prevent insurance coverage.

On balance, both options leave a lot to be desired for seniors, but repeal of the Affordable Care Act would be a disaster for many of us, especially when faced with the ever increasing cost of drugs, and the senior citizen need for more medications as we age.  Re-opening the donut hole is just not an acceptable option for us.

There is still plenty of time between now and Election Day for Romney/Ryan to clarify their plan and to specifically mention organ and tissue transplant coverage but until they do this blog will play it safe and endorse the present flawed but more understandable Medicare/Obamacare system.

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.

Big Pharma They Love a Sick Population and Want To Keep it That Way


As most of our readers know I am not only a senior citizen but one who has had a heart transplant.  I am on Medicare, have supplemental insurance and also participate in Medicare Part D, the prescription drug program.

Both age and my status as a transplant recipient cause me to take several expensive drugs.  While anti-rejection drugs are fully covered by Medicare others for blood pressure, COPD and thyroid are not.  They are expensive, very expensive and while in the so-called “Donut hole” we have paid nearly $1,000 a month so the price of prescription drugs is a big issue in our home.  Upon passage of the affordable care act the cost was cut in half but $500 a month is still a lot of money.  That’s my lead in to this question.

Will someone please offer a reasonable, understandable and clear explanation as to why Medicare is not allowed by law to negotiate the price of drugs?  I have researched this issue for hours and can’t find a simple explanation.  There are a lot of convoluted, rambling excuses but not a clear reason.  Here’s an example of the reasoning Pharmaceutical companies use for their opposition to allowing Medicare to negotiate the price of drugs (like the Veterans Administration does).  “Federal price negotiations would represent a policy change carrying significant risks for research and development investment in new and improved medicines. A substantial body of research shows that similar federal drug programs impose prices substantially lower than those negotiated in the private sector, and that such lower prices inevitably will reduce research and investment in new and improved medicines. This slowdown in pharmaceutical innovation will yield highly adverse effects upon future patients in terms of reduced life expectancies.”

Yakkity, Yak, blah, blah, blah!.  On one hand big pharma tells us that negotiating drug prices would cut research money while on the other hand we learn they have spent $2.3 billion on lobbying and $183 million on campaign contributions since 1998, according to the Center for Responsive Politics. The ready money serves as a strong deterrent against any legislative proposal that would lower costs for consumers and profits for the drug makers.  Furthermore keeping drug prices high for seniors adds $150 to $300 Billion to drug industry profits over a ten year period. The increased costs hit the pockets of both seniors and taxpayers.

Yeah, those poor pharma people sure are hurting.  When you are willing to spend over $2 Billion to protect your profitability, profitability must be sky high.  I don’t know how, in good conscience any member of congress or the President of the United States can oppose giving Medicare the right to negotiate the price of drugs.  They are, after all, probably the biggest supplier of drugs in the world but that’s not the end of the pharma, health insurance, special interest war on us (yes us, you and me) campaign.

Let us take a look at the drugs that keep organ transplant patients alive. They are called immunosuppressants or more commonly, anti-rejection drugs.  Here’s the story. If you are of retirement age or disabled or somehow covered by Medicare they will pay 80% of the cost of an organ transplant and the full cost of those absolutely necessary anti- rejection drugs for the rest of your life.  Without them organ transplant patients would die.

Here’s the rub —  If you have kidney disease (only kidney patients are eligible for this program) and are not disabled or of retirement age Medicare will pay 80% of the cost of the transplant but will only provide you with free anti-rejection drugs for thirty six months.  Some people would say, “That’s fair, a person should be able to go back to work and pay for their own drugs,” and that is a reasonable thought but the price of anti-rejection drugs is anything but reasonable.  They can cost from $1,000 to $3,000 per month, for life.  If you stop taking them your body will begin to reject your organ and you could die.

Now here’s where the story becomes absolute nonsense.  Let’s assume you can’t pay for the drugs and you go into rejection and are hospitalized.  Medicare will pay 80% of the cost of your care and even 80% of the cost of another transplant and if a transplant able organ is not available they will pay for you to be on dialysis for the rest of your life.  Taxpayers spend more than $20 billion a year to care for about 400,000 people who get dialysis treatments — about $77,000 per patient.  The most that anti-rejection drugs would cost would be less than half that amount, $36,000 per year, yet congress refuses to allow Medicare to pay for the drugs. Every year a bill is introduced that would at least extend the 36 month period if not eliminate it entirely but it is defeated every time.

If you think all of this is pretty stupid, it gets dumber. One of the organizations that has opposed extending the 36 month period is the National Kidney Foundation (NKF).  NKF says they oppose the added benefit because money to pay for it would have to come out of dollars earmarked for dialysis coverage, but wait…if patients had the drugs they wouldn’t need dialysis, would they?  Do you get the idea that NKF has an interest in keeping the dialysis industry alive?  The dialysis industry is huge and there are only two major players.  If you want to learn more about this industry go to http://www.propublica.org/article/in-dialysis-life-saving-care-at-great-risk-and-cost

There is an adage that says  you shouldn’t let the fox guard the chicken coop but it seems that is what has happened in health care generally but certainly in the two situations I outlined here.  According to Open Secrets.com, The Pharmaceutical industry alone spends billions of dollars on influencing our lawmakers…here’s the chart…

Top Contributors, 2011-2012

Contributor

Amount

Pfizer   Inc

                $1,287,136

Amgen   Inc

                 $1,017,312

Abbott   Laboratories

                 $868,480

Stryker   Corp

                 $819,464

AstraZeneca   PLC

                 $794,863

Merck   & Co

                 $763,935

Johnson   & Johnson

                 $716,541

Upsher-Smith   Laboratories

                 $612,900

Eli   Lilly & Co

                 $571,179

McKesson   Corp

                 $555,125

4Life Research

                 $539,950

EOE   Inc

                 $525,000

GlaxoSmithKline

                 $493,472

Masimo   Corp

                 $469,468

AmerisourceBergen   Corp

                 $461,877

Roche   Holdings

                 $458,940

Novartis   AG

                 $454,089

Harris   Frc

                 $351,000

Bayer   AG

                 $341,715

Sanofi

                 $299,526

Contributions to Democrats  Republicans  Outside Spending Groups

Top Recipients, 2011-2012

Candidate

Office

Amount

Obama, Barack (D)      $785,385
Romney, Mitt (R)      $622,986
Hatch, Orrin G (R-UT)

Senate

     $327,627
Upton, Fred (R-MI)

House

     $253,615
Brown, Scott (R-MA)

Senate

     $246,953

This election cycle has us talking about the economy and where our money is going and it’s missing the boat completely.  Your money, most of your money, maybe all of your money will eventually go to the Pharmaceutical companies and there is little or no control over them.  The spend Billions of dollars influencing our lawmakers to make sure that their profitability is left unchecked and for the most part it is.

It is big Pharma that doesn’t want Medicare to negotiate the price of drugs, so you pay more, it is big Pharma that inflates the price of some drugs to such a high point that some families either can’t afford them and die or lose everything to pay for them.  It is big Pharma that produces drug X for $5.00 in Mexico and the same drug for $50.00 in the U.S. and then they want a ban on going to Mexico to get it cheaper.  It is big Pharma that gouges the elderly to the point where some have to choose between eating and taking their meds.  These ultra capitalists have no heart and no soul.  They think, eat, sleep and dream profits and boy are they good at it.

Healthcare has long been one of my favorite topics and while it has taken me far to long to arrive at this conclusion I have arrived.  It seems quite obvious that the nearly $1 trillion a year worldwide pharmaceutical business primary goal is to make sure we either are sick or think we are sick.   Consider this, they don’t make a dime on dead or well people so making us sick or having us believe we are sick is good for business.  Think about all the syndromes we hear about restless legs, carpal tunnel syndrome, cervical syndrome, chediak-higashi syndrome, chinese restaurant syndromeonder chronic fatigue immune dysfunction syndrome, churg-strauss syndrome, conn’s syndrome, cornelia de lange syndrome  and costochondral syndrome…and this is a short list.  All of those syndromes, real or imagined are treated by some sort of medication, expensive medication.  the Pharmaceutical companies love syndromes and discover them with great regularity so they can convince physicians to diagnose them and then prescribe for the malady.

Isn’t it interesting that none of the current crop of politicians ever talks about this elephant in the living room. Pharmaceutical companies have a vested interest in keeping us just a little bit sick so they can sell the expensive treatments they have developed.  Which makes you this, “do they ever seriously look for cures?”  Why would they?   There’s nowhere near as much money in a cure as there is in a new drug to treat an existing condition.

And…consider this, too.  There is a wide variety of serious diseases that affect very few people, they are called “Orphan” diseases like  acrocephalosyndactylia, Acrodermatitis, Addisons disease,Aamyotophic Lateral Sclerosis, Adie Syndrome, Amylose, Asperger Syndrome,Barret Esophagus, Bardet-biedl syndrome and thousands more.  These diseases are rare enough that little research big Pharma money is spent on trying to find either cures or treatments because there’s not enough potential profit in it.   Why spend money on a disease that affects a few thousand when you can develop a drug that affects millions and increase profits substantially.

Big Pharma control of our health and what we pay to either fix it or keep it is an issue that affects everyone but for some strange reason we’d rather talk about who marries who, Prince William’s nudity in a hotel and tax cuts for rich people.  Americans ought to wake up and see what is really affecting their daily lives and their wallets.  It’s not two women who want to marry each other.  It’s big Pharma and if you look closely at any time of the night or day they have a hand in your wallet.

 

 

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.

Addiction — A Journey Into Hell


If you are suffering from organ failure and you are an addict you can be eligible for an organ transplant but you have to be clean and sober first and  most transplant centers require at least six months of sobriety before they will consider you.

Yesterday I posted a blog “My Last Drunk..” about the time 30 years ago I checked myself into treatment for alcoholism.  It was not a particularly outrageous story but it was significant  to me because it was my very last drunk.

I write a lot about addiction because it is one of the primary killers of human organs and because this group is dedicated to ending the organ shortage I’m hoping that stories about addiction and recovery will  help those suffering from the disease find their way into a recovery program.  If we can do that the demand for organs will decrease and those who remain on the list will have a better chance of getting a transplant.

I realize that there are many who refuse to believe that addiction is a disease and many who think addicts even if they are in recovery should not be eligible for transplants because of what they did to themselves.  And I will be the first to admit that addicts do the damage to themselves but it’s not on purpose, it is not because they choose to destroy their organs, their families and their careers.  Who would be crazy enough to do that?  The life of an addict is pure hell and readers will just have to believe me when I say, “No one would choose to live like that, no one!”

When you are an addict you are totally out of control and you don’t set out to harm anyone including yourself but the power of the disease is so great it is irresistible.  When the demand for your drug of choice invades your body you must respond to it no matter who gets hurt along the way. You will lie, cheat, steal and in some cases even physically harm anyone who gets between you and, in my case, my bottle.

Being an addict also means you spend inordinate amounts of time trying to figure out how to feed your habit.  With alcohol money is not as much a problem as with illegal or prescription drugs.  Alcohol is easy to get and relatively cheap but you still must plan.  In most places you can’t buy a bottle of booze on a Sunday so you have to make sure that you have enough booze on Saturday to take you through Monday.  Then in many cases, especially if you have a family you don’t want to know about your addiction, you have to have a place to hide your drug of choice.  I had a secret panel in the wall of our finished basement, a cubby hole In the garage, a special place in a sand pit near my home where I could hide and then dig up my bottle, inside an old tire in the garage and the bottom of the waste basket under used paper towels in the men’s room at my place of employment.

If illegal drugs are your problem then money becomes a huge issue and you will either steal it or con your best friends or family out of it by manipulating them in any one of a number of ways.  No lie is too outrageous for the addict and in many cases no action is too outrageous.  That’s how powerful the addiction is.  You will literally sell your soul to get what you need and the worst part of it is that you can’t even really get high anymore, you use to try to feel normal but all you really get is sicker and sicker both mentally and physically until either you are hospitalized, treated or die.

Addiction will overwhelm your sense of ethics, pride, morals, self-worth and will to live.  I remember having a conversation with myself once in which I said, “Bob you have to stop drinking, you are killing yourself!”  My response without thinking and without pause was, “I don’t care.”  That’s the power of the drug.

When I drank I sometimes consumed up to two quarts of vodka a day.  I was a big man 6’4” and 250 lbs.  I could hold a lot and miraculously I functioned.  I got up every day, put on a suit threw a quart of vodka in my oversized briefcase and went to work.  I drank my way through four years as a Governor’s press secretary and appeared to many if not most to be sober, I almost never was.

In the four years I anchored Morning Edition on the Minnesota Public Radio Network I rarely drew a sober breath yet I interviewed people, had impeccable timing, read news and performed all the other duties an on-air person can do. Sometimes I struggled mightily to keep from slurring words and to walk straight but I was able to fool most  of the people, most of the time.

But it all catches  up with you and at some point you find yourself in places and with people you would not normally associate with.  It is as though the rest of the world can’t see you.  All the while you know it is wrong but you just keep sinking deeper and deeper into the bottomless pit of despair and the more you realize how you have degenerated the more you use your drug of choice to help you forget what you have become.

Addiction is a horrible disease and as I mentioned in yesterday’s blog it cannot be overcome with will power it takes help, a lot of help from a lot of people and then it takes superhuman effort and the help of those same people and even more to stay sober.

One of the toughest parts of recovery is following the Alcoholics Anonymous step that dictates that you make amends to those you have harmed.  It means you must apologize and it also means your apology may not be accepted and you have to learn to live with that.  It’s part of the soul and conscience cleansing process and it is difficult but necessary.

Recovery from addiction is on-going.  You are never recovered because one drink, just one, will send you right back into that deadly spiral into the depths of living hell.  As the expression goes, “One drink is too many and a thousand is not enough.”

I’ll close with this. If you are an addict, there is hope and there is help. It isn’t easy and it isn’t quick but it can work and you can live a normal life again but you cannot do it alone.  You need help.  You can start by calling your local chapter of Alcoholics Anonymous or Narcotics Anonymous or any accredited treatment center. In most cases insurance will cover treatment.  If you are uninsured there is still help available through AA and NA.  It is only a phone call away. You just have to take it one day at a time, sometimes, it is one moment at a time but it is always moving forward, sober!

f you are an addict, think you might be or know someone who needs help here are some resources. 

http://nationalsubstanceabuseindex.org/

http://www.addictionresourceguide.com/resources.html

http://www.drugabuse.gov/publications/principles-drug-addiction-treatment/resources

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.

Addictions Are Killing Us & Government Is Profiting From Them


This blogsite is all about organ donation/transplantation issues.  Substance abuse (tobacco, alcohol, drugs) kills more organs than any other cause.  That’s why we continue to bring it to your attention.  We hope you will talk about it with your elected officials. (The author, Bob Aronson, is a former smoker (1991) and a recovering alcoholic (1982).  He also received a heart transplant in August of 2007. 

I have long said that the best way to eliminate the organ shortage crisis is to reduce the demand for transplantable organs.  The only way we can do that is to live healthier lives.  But living healthier means sacrifice and for some the sacrifice is just too big, especially if you are an addict.

“Addiction Medicine: Closing the Gap Between Science and Practice.” Is a new report from The National Center on Addiction and Substance Abuse at Columbia University.  Just released it offers a harsh look devastating national problem. http://tinyurl.com/7o67a26  The largest preventable public health problem in the United States is substance abuse and addiction.  They are the leading causes of preventable death and the numbers prove it.

In 2009 about 2,5 million Americans died —  nearly 600,000 of them were attributable to alcohol, tobacco or other drugs.  600.000 of them.  Let me put that into perspective.  When the Luxury liner Titanic sank in 1912 1500 people died.  It would take 400 Titanic sinkings every year to total the 600,000 killed by alcohol, tobacco and drugs.  That is one more than Titanic sinking every day of the year.  Can you imagine the outrage if ships were headed to Davey Jones Locker that frequently.  But there is no outrage over the numbers killed by drugs, none.  Politicians don’t even talk about it, the issue is not one that comes up in political campaigns and is certainly never a topic of political debate.

As taxpayers we are concerned about how our money is spent and you will often see politicians make a huge issue out of a million dollar cost overrun but can you name one that has made an issue of the $468 billion dollar yearly cost of addiction and substance abuse?

Worse yet, the recent report from the National Center on Addiction and Substance Abuse at Columbia University (CASA Columbia) indicates that  only one in 10 people with addiction to alcohol and/or drugs report receiving any treatment of any kind, ever.  None, zippo, nada, niente, nothing. . Can you imagine the outrage if the neglect included  heart or lung disease, cancer(s), asthma, diabetes, tuberculosis, or stroke and other diseases of the brain?

The Columbia University report is one of the most comprehensive ever and it clearly indicates that Tobacco use is the leading preventable cause of death and disability in this country…number one.  Ahh…but wait there’s more.

  • 40 % of traffic fatalities involved someone under the influence
  • Prescription drug overdose deaths are up 500 percent since 1990
  • Increased risk of heart and lung diseases
  • Cancer and sexually transmitted diseases are up
  • There’s more parental substance abuse which affects children performing poorly in school and developing behavioral problems.
  • There’s more domestic violence, child abuse, unplanned pregnancies and financial problems.

The Columbia report also points out that there are 80 million people in the U.S. that are 12 and older that are abusing substances but not yet addicted.  It says these people represent a huge opportunity to intervene before disaster strikes but there is no program for intervention so it is likely these people will just be added to the growing list of casualties.

Apparently one of the big reasons for the lack of action in the U.S. is that about a third of us believe that addiction is simply a lack of willpower and self-discipline and that people should be able to control their habits..  While the medical community long ago accepted addiction as a disease many in the public do not and that accounts for some of the lack of action.

Another reason for the lack of action is money.  Local, state and federal governments collect a lot of tax money from the sale of alcohol and tobacco.  In 2009 the Feds collected about $7 billion dollars in cigarette excise taxes.  Billions more are collected by local and state governments and while some of the money goes to smoking cessation programs it is nowhere near enough.

So here’s the dilemma.  If government makes a serious effort to get people to quit smoking or to get into treatment for other addictions these people will quit buying the products that generate tax revenue and that means they will have to raise taxes elsewhere or cut spending.  They are not inclined to do either.  All politicians like to talk about lower taxes but the taxes they will not reduce or eliminate are the ones they collect on products that are killing us.

We must get a handle on this problem because it will ruin us far more quickly than any other threat facing us.  This report is well worth reading and when you are done  take an additional step.  Get in touch with every politician you know and turn up the heat to do something about this national disgrace.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s 1800 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.

Alcohol and Drugs The Organ and Child Killers


Alcoholism and drug abuse have haunted my family for years.  I’ve been in recovery for just about 30 years but I’m not alone in my family.  Anonymity disallows further disclosure but trust me, I know about addiction first hand and even as I write this another family member is suffering and causing suffering.  I hate the disease with every fiber in my body and I know how hard it is to fight it.

Alcohol is a drug. It is no different than heroin or cocaine or Dilaudid or Oxycontin.  They are all addictive drugs and they ruin lives and kill people.  Those are facts.  Here’s another fact.  There is an alcohol and drug abuse epidemic among young people in America today.

Here is some shocking information from the National Center On Addiction and Substance Abuse at Columbia University.  And if you are not shocked you should be.  http://www.casacolumbia.org/templates/Home.aspx?articleid=287&zoneid=32

  • Half of college students binge drink and or abuse other drugs and almost a quarter meet medical criteria for alcohol or drug dependence.
  •  Prescription drug abuse is the most rapidly increasing drug abuse among teens.
  • Each day more than 13,000 children and teens take their first drink
  • 7 million (26 percent) of public school students age 12-17 say their school is both gang and drug infected.
  • Teens who see their parents drunk are more than twice as likely to get drunk in a month and three times likelier to use marijuana and smoke cigarettes
  • In 2009 more than one third of teens (8.7 million) said they can get prescription drugs to get high within a day and nearly one in five said they could get them in an hour.

Now, you may ask yourself why a blog about organ donation and transplantation is focusing on alcohol.  The answer is simple.  Alcohol can and does destroy human organs.  If Americans could better control their alcohol consumption the number of people who need organ transplants would drop considerably.  Here are just a few of the effects of prolonged alcohol and drug abuse:’

  • The brain —  confusion and memory loss.  Changes in sensation and numbness.
  • Scarring of the liver called cirrhosis which can lead to death.
  • Disease of the pancreas and stomach even stomach cancer
  • Heart irregularities and weakening leading to death (my alcoholism could have contributed to my need for a heart transplant).
  • Upset the body’s natural control of blood fats and blood sugar levels.
  • Bone thinning called osteoporosis
  • Kidney disease

Long-term use of alcohol and drugs in excessive quantities is capable of damaging nearly every organ and system in the body.

Now, back to the epidemic amongst our youth.  Let’s just focus on alcohol.  Underage drinkers account for 11.4 percent of all the alcohol consumed in the U.S., according to Teen Tipplers: America’s Underage Drinking Epidemic, a report released by The National Center on Addiction and Substance Abuse at Columbia University.

The report found that more than five million high schoolers (31 percent) say they binge drink at least once a month. The gender gap in alcohol consumption that for generations separated girls and boys has disappeared among younger teens: male and female ninth graders are just as likely to drink (40 percent vs. 41 percent) and to binge drink (22 percent vs. 20 percent), the news release said.

But let’s not depend on just once source.  Here’s what the National Institute On Alcohol Abuse and Alcoholism (NIAAA) says about young teens and alcohol and the related risks.

“For young people, alcohol is the drug of choice. In fact, alcohol is used by more young people than tobacco or illicit drugs. Although most children under age 14 have not yet begun to drink, early adolescence is a time of special risk for beginning to experiment with alcohol.

While some parents and guardians may feel relieved that their teen is “only” drinking, it is important to remember that alcohol is a powerful, mood-altering drug. Not only does alcohol affect the mind and body in often unpredictable ways, but teens lack the judgment and coping skills to handle alcohol wisely. As a result:

  • Alcohol-related traffic crashes are a major cause of death among young people. Alcohol use also is linked with teen deaths by drowning, suicide, and homicide.
  • Teens who use alcohol are more likely to be sexually active at earlier ages, to have sexual intercourse more often, and to have unprotected sex than teens who do not drink.
  • Young people who drink are more likely than others to be victims of violent crime, including rape, aggravated assault, and robbery.
  • Teens who drink are more likely to have problems with school work and school conduct.
  • The majority of boys and girls who drink tend to binge (5 or more drinks on an occasion for boys and 4 or more on an occasion for girls) when they drink.
  • A person who begins drinking as a young teen is four times more likely to develop alcohol dependence than someone who waits until adulthood to use alcohol.

The message is clear: Alcohol use is very risky business for young people. And the longer children delay alcohol use, the less likely they are to develop any problems associated with it. That’s why it is so important to help your child avoid any alcohol use.

So you say, “Ok, but what can I do about it. If kids want to drink they’ll find a way.”  And you are right.  But often one of the ways they find to drink is through family members.  Over 70% of eighth graders say alcohol is easy to get and 30% of children age 12-14 get alcohol from a family member.

It’s also wise to use some common sense and remember that as parents you are role models. Your drinking habits are closely observed by your children whether you  think so or not.

There is help and advice from many sectors…SAMSHSA for one (SAMSHSA is the Substance Abuse and Mental Health Services Administration of the U.S. Government.)  http://underagedrinking.samhsa.gov/  Hers’ what they say.

Between the ages of 9 and 13, children start to think differently about alcohol. Many children begin to think underage drinking is OK and some even start to experiment. It’s never too early to talk to your children about alcohol, and encourage them to talk with you.  Over 70% of children say parents are the leading influence in their decision to drink or not.

Lots of little talks are more effective than one “big talk.”

Sitting down for the “big talk” about alcohol can be intimidating for both you and your child. Try using everyday opportunities to talk – in the car, during dinner, or while you and your child are watching TV. Having lots of little talks takes the pressure off trying to get all of the information out in one lengthy discussion, and your child will be less likely to tune you out.

When you do talk about alcohol, make your views and rules clear.

Take the time to discuss your beliefs and opinions about alcohol with your child. Be honest and express a clear, consistent message that underage drinking is unacceptable. When they feel that you’re being real and honest with them, they’ll be more likely to respect your rules about underage drinking.3

Family, peers, school, and the community all play a role in your child’s decision to drink. In fact, most children who use alcohol get it from a friend or family member.1 To ensure these people become positive role models for your child, let them know how you feel about underage drinking.

I have always contended that the best way to solve the organ shortage is to live healthier lives.  That means we have to start at a very early age.  Parents must teach their children about drugs and alcohol as soon and as often as possible.  If we don’t get a handle on this problem every other problem we have in our society will get worse.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer 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.

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