Blog Archives

What You Need To Know About Your Liver and The Transplant Process


By Bob Aronson

cartoonThe liver is an incredibly important organ and the only one in the human body that can regenerate itself.  It is second only in size to the skin (yes the skin is an organ) and has been described as boomerang shaped.  Virtually every nutrient we consume passes through the liver so it can be processed and turned into a different biochemical form for use by other organs.

Located just below the rib cage in the upper right side of your abdomen the liver has three main functions.  It helps in digestion makes proteins and helps eliminate toxic substances.the liver

The liver is the only organ in the body that can easily replace damaged cells, but if enough cells are lost, the liver may not be able to meet the needs of the body.

The liver is like a very complex factory.  Included in its many functions are:          http://www.medicinenet.com/liver_anatomy_and_function/images-quizzes/index.htm

  • Production of bile that is required in the digestion of food, in particular fats;
  • Storing of the extra glucose or sugar as glycogen, and then converting it back into glucose when the body needs it for energy;
  • Production of blood clotting factors;
  • Production of amino acids (the building blocks for making proteins), including those used to help fight infection;
  • The processing and storage of iron necessary for red blood cell production;
  • Manufacture of cholesterol and other chemicals required for fat transport;
  • Conversion of waste products of body metabolism into urea that is excreted in the urine; and
  • Metabolizing medications into their active ingredient in the body.
  • Cirrhosis is a term that describes permanent scarring of the liver. In cirrhosis, the normal liver cells are replaced by scar tissue that cannot perform any liver function.
  • Acute liver failure may or may not be reversible, meaning that on occasion, there is a treatable cause and the liver may be able to recover and resume its normal functions.

The Liver can be affected by any one of a number of diseases.  Click on the item of interest in the list below for a complete explanation.

The Liver Disease Information Center provides information on a variety of topics related to liver health and liver diseases

liver disease. http://www.liverfoundation.org/abouttheliver/info/

How does alcohol affect the liver? (From the American Liver Foundation)  http://www.liverfoundation.org/abouttheliver/info/alcohol/

Alcohol can damage or destroy liver cells.

liver disease stagesThe liver breaks down alcohol so it can be removed from your body. Your liver can become injured or seriously damaged if you drink more alcohol than it can process.

What are the different types of alcohol-related liver disease?

There are three main types of alcohol-related liver disease: alcoholic fatty liver disease, alcoholic hepatitis, and alcoholic cirrhosis.

Alcoholic fatty liver disease
Alcoholic fatty liver disease results from the deposition of fat in liver cells. It is the earliest stage of alcohol-related liver disease. There are usually no symptoms. If symptoms do occur, they may include fatigue, weakness, and discomfort localized to the right upper abdomen. Liver enzymes may be elevated, however tests of liver function are often normal. Many heavy drinkers have fatty liver disease. Alcoholic fatty liver disease may be reversible with abstinence of alcohol.

Alcoholic hepatitis
Alcoholic hepatitis is characterized by fat deposition in liver cells, inflammation and mild scarring of the liver. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain, fever and jaundice. Liver enzymes are elevated and tests of liver function may be abnormal. Up to 35 percent of heavy drinkers develop alcoholic hepatitis and of these 55% already have cirrhosis.

Alcoholic hepatitis can be mild or severe. Mild alcoholic hepatitis may be reversed with abstinence. Severe alcoholic hepatitis may occur suddenly and lead to serious complications including liver failure and death.

Alcoholic cirrhosis
Alcoholic cirrhosis, the most advanced type of alcohol induced liver injury is characterized by severe scarring and disruption of the normal structure of the liver — hard scar tissue replaces soft healthy tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis. Symptoms of cirrhosis may be similar to those of severe alcoholic hepatitis. Cirrhosis is the most advanced type of alcohol-related liver disease and is not reversed with abstinence. However, abstinence may improve the symptoms and signs of liver disease and prevent further damage

The Liver Transplant

Liver transplants are performed only for patients with end-stage liver disease for whom standard medical and surgical therapies have failed. Conditions that can lead to liver transplantation include: transplant(http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

Liver transplants are the second most common transplants after kidneys.  They require that the blood type and body size of the donor match the person receiving the new organ. There are more  6,000 liver transplants are performed each year in the United States. The surgery usually takes between four and twelve hours and most patients can expect a hospital stay of up to three weeks following surgery. . .

Essential Information For The Transplant Patient

Most transplant centers function in pretty much the same manner, but Johns Hopkins Medical Center in Baltimore, Maryland offers one of the best summaries of what the transplant patient can expect.  http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/liver_transplantation_procedure_92,P07698/

Risks of the procedure

As with any surgery, complications can occur. Some complications from liver transplantation may include, but are not limited to, the following:

  • Bleeding
  • Infection
  • Blockage of the blood vessels to the new liver
  • Leakage of bile or blockage of bile ducts
  • Initial lack of function of new liver

The new liver may not function for a brief time after the transplant. The new liver may also be rejected. Rejection is a normal reaction of the body to a foreign object or tissue. When a new liver is transplanted into a recipient’s body, the immune system reacts to what it perceives as a threat and attacks the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to survive in a new body, medications must be taken to trick the immune system into accepting the transplant and not attacking it as a foreign object.

Contraindications for liver transplantation include, but are not limited to, the following:

  • Current or recurring infection that cannot be treated effectively
  • Metastatic cancer. This is cancer that has spread from its primary location to one or more additional locations in the body.
  • Severe cardiac or other medical problems preventing the ability to tolerate the surgical procedure
  • Serious conditions other than liver disease that would not improve after transplantation
  • Noncompliance with treatment regimen
  • Alcohol consumption

There may be other risks depending on your specific medical condition. Be sure to discuss any concerns with your doctor prior to the procedure.

Before the procedure

In order to receive a liver from an organ donor who has died (cadaver), a recipient must be placed on a waiting list of the United Network for Organ Sharing (UNOS). Extensive testing must be done before an individual can be placed on the transplant list.

Because of the wide range of information necessary to determine eligibility for transplant, the evaluation process is carried out by a transplant team. The team includes a transplant surgeon, a transplant hepatologist (doctor specializing in the treatment of the liver), one or more transplant nurses, a social worker, and a psychiatrist or psychologist. Additional team members may include a dietitian, a chaplain, and/or an anesthesiologist.

Components of the transplant evaluation process include, but are not limited to, the following:

  • Psychological and social evaluation. Psychological and social issues involved in organ transplantation, such as stress, financial issues, and support by family and/or significant others are assessed. These issues can significantly impact the outcome of a transplant.
  • Blood tests. Blood tests are performed to help determine a good donor match, to assess your priority on the donor list, and to help improve the chances that the donor organ will not be rejected.
  • Diagnostic tests. Diagnostic tests may be performed to assess your liver as well as your overall health status. These tests may include X-rays, ultrasound procedures, liver biopsy, and dental examinations. Women may receive a Pap test, gynecology evaluation, and a mammogram.

The transplant team will consider all information from interviews, your medical history, physical examination, and diagnostic tests in determining your eligibility for liver transplantation.

Once you have been accepted as a transplant candidate, you will be placed on the UNOS list. Candidates in most urgent need of a transplant are given highest priority when a donor liver becomes available based on UNOS guidelines. When a donor organ becomes available, you will be notified and told to come to the hospital immediately.

If you are to receive a section of liver from a living family member (living-related transplant), the transplant may be performed at a planned time. The potential donor must have a compatible blood type and be in good health. A psychological test will be conducted to ensure the donor is comfortable with the decision.

The following steps will precede the transplant:

  • Your doctor will explain the procedure to you and offer you the opportunity to ask any questions about the procedure.
  • You will be asked to sign a consent form that gives your permission to do the surgery. Read the form carefully and ask questions if something is not clear.
  • For a planned living transplant, you should fast for eight hours before the operation, generally after midnight. In the case of a cadaver organ transplant, you should begin to fast once you are notified that a liver has become available.
  • You may receive a sedative prior to the procedure to help you relax.
  • Based on your medical condition, your doctor may request other specific preparation.

During the procedure

Liver transplantation requires a stay in a hospital. Procedures may vary depending on your condition and your doctor’s practices.

Generally, a liver transplant follows this process:

  • You will be asked to remove your clothing and given a gown to wear.
  • An intravenous (IV) line will be started in your arm or hand. Additional catheters will be inserted in your neck and wrist to monitor the status of your heart and blood pressure, as well as for obtaining blood samples. Alternate sites for the additional catheters include the subclavian (under the collarbone) area and the groin.
  • You will be positioned on the operating table, lying on your back.
  • If there is excessive hair at the surgical site, it may be clipped off.
  • A catheter will be inserted into your bladder to drain urine.
  • After you are sedated, the anesthesiologist will insert a tube into your lungs so that your breathing can be controlled with a ventilator. The anesthesiologist will continuously monitor your heart rate, blood pressure, breathing, and blood oxygen level during the surgery.
  • The skin over the surgical site will be cleansed with an antiseptic solution.
  • The doctor will make a slanting incision just under the ribs on both sides of the abdomen. The incision will extend straight up for a short distance over the breast bone.
  • The doctor will carefully separate the diseased liver from the surrounding organs and structures.
  • The attached arteries and veins will be clamped to stop blood flow into the diseased liver.
  • Depending on several factors, including the type of transplant being performed (whole liver versus a portion of liver), different surgical techniques may be used to remove the diseased liver and implant the donor liver or portion of the liver.
  • The diseased liver will be removed after it has been cut off from the blood vessels.
  • The doctor will visually inspect the donor liver or portion of liver prior to implanting it.
  • The donor liver will be attached to the blood vessels. Blood flow to the new liver will be established and then checked for bleeding at the suture lines.
  • The new liver will be connected to the bile ducts.
  • The incision will be closed with stitches or surgical staples.
  • A drain may be placed in the incision site to reduce swelling.
  • A sterile bandage or dressing will be applied.

After the procedure In the hospital

After the surgery you may be taken to the recovery room before being taken to the intensive care unit (ICU) to be closely monitored for several days. Alternately, you may be taken directly to the ICU from the operating room. You will be connected to monitors that will constantly display your EKG tracing, blood pressure, other pressure readings, breathing rate, and your oxygen level. Liver transplant surgery requires an in-hospital stay of seven to 14 days, or longer.recovery

You will most likely have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. The breathing tube may remain in place for a few hours up to several days, depending on your situation.

You may have a thin plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed.

Blood samples will be taken frequently to monitor the status of the new liver, as well as other body functions, such as the kidneys, lungs, and blood system.

You may be on special IV drips to help your blood pressure and your heart and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as tolerated.

Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start liquids to drink. Your diet may be gradually advanced to more solid foods as tolerated.

Your immunosuppression (antirejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications.

When your doctor feels you are ready, you will be moved from the ICU to a room on a regular nursing unit or transplant unit. Your recovery will continue to progress here. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated.

Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital.

At home

Once you are home, it will be important to keep the surgical area clean and dry. Your doctor will give you specific bathing instructions. The stitches or surgical staples will be removed during a follow-up office visit, if they were not removed before leaving the hospital.

You should not drive until your doctor tells you to. Other activity restrictions may apply.

Notify your doctor to report any of the following:

  • This may be a sign of rejection or infection.
  • Redness, swelling, or bleeding or other drainage from the incision site
  • Increase in pain around the incision site. This may be a sign of infection or rejection.
  • Vomiting and/or diarrhea

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.

What is done to prevent rejection?

To allow the transplanted liver to survive in a new body, you will be given medications for the rest of your rejectionlife to fight rejection. Each person may react differently to medications, and each transplant team has preferences for different medications.

New antirejection medications are continually being developed and approved. Doctors tailor medication regimes to meet the needs of each individual patient.

Usually several antirejection medications are given initially. The doses of these medications may change frequently, depending on your response. Because antirejection medications affect the immune system, people who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making you very susceptible to infection.

Some of the infections you will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery.

The following are the most common symptoms of rejection. However, each individual may experience symptoms differently. Symptoms may include, but are not limited to, the following:

  • Fever
  • A yellowing of the skin and eyes due to bile pigments in the blood.
  • Dark urine
  • Itching
  • Abdominal swelling or tenderness
  • Fatigue or irritability
  • Headache
  • Nausea

The symptoms of rejection may resemble other medical conditions or problems. Consult your transplant teaoncerns you have. Frequent visits to and contact with the transplant team are essential.

Organ transplants are expensive and the cost goes well beyond the surgery itself.  If you are told you need a transplant and are sent to a transplant center for evaluation you can bet one of the first questions you will be asked is, “Do you have the financial resources to pay for your transplant?”

According to the National Foundation for Transplants http://www.transplants.org/faq/how-much-does-transplant-cost the average cost of a liver transplant and first year expenses in the United States is $575,000.

The Mayo Clinic developed this helpful list of questions that will help you develop the answer to that question. http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/choosing-mayo-clinic/costs-insurance-information

Insurance information

Before your transplant, it’s important that you work closely with your insurance company to understand your benefit plan. You’ll be responsible for any of your transplant and medical care costs not covered by your insurance company.costs

You may want to ask your insurance company several questions regarding your transplant expenses, including:

  • What is the specific coverage of my plan? What are my deductibles, coinsurance, copayments, lifetime maximum amount and annual maximum amounts for both medical care and transplant services?
  • Does my plan have a pre-existing or waiting period clause? If so, what is the time frame? Can this be waived?
  • Does my plan include pharmacy coverage? If so, will my plan cover my current medications and immunosuppressant medications?
  • Does my plan require any special approvals for evaluation or transplant? How long does the approval process take once submitted to insurance?
  • Does my plan cover my transportation and lodging expenses during my transplant care?
  • Does my current insurance require enrollment in Medicare when eligible?
  • Does my insurance follow Medicare Coordination of Benefits guidelines?
  • How will my current coverage change after enrolling in Medicare? Will my plan become a supplemental or secondary plan?

If your plan is a Medicare supplement, ask questions including:

  • Does my plan follow Medicare guidelines?
  • Does my plan cover Medicare Part A and B deductible and coinsurance?
  • Does my plan have a pre-existing or waiting period? If so, what is the time frame?
  • Does my plan offer an option for Medicare Part D coverage?

Other expenses

Please plan for other expenses that may occur related to your transplant, which may include follow-up medical appointments, long-term medications, caregiver expenses, travel, parking, lodging and other expenses.

Financial Aid

If you need an organ transplant, but don’t have the financial resources to pay for it you should first work with the transplant center social worker to see what is available. There are a number of resources for which you may qualify.  Just click on this link for the complete list and explanation of services.  http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/

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

OPOs — the Quiet Angels


faith quoteYou rarely ever hear about them, they don’t really seek publicity and when they do talk they always give the credit for their life saving activities to others.  The “They” of which I’m speaking are Organ Procurement Organizations (OPOs).  They are the “Middle man” so to speak, they are the ones who make all the arrangements to get transplantable organs to the people who need them.

When the National Organ Transplant Act was signed into law in 1984 it directed that organ allocation would be managed on a national basis through a public-private partnership.  The United Network for Organ Sharing (UNOS) is the private non-profit agency that works under contract with the U.S. Department of Health and Human services to coordinate their national list of people who need transplants with available organs.  UNOS has its headquarters in Richmond, Virginia.

OPOs were also mandated by the 1984 act and there are 58 of them working on the local and regional level.  They are charged with two tasks. 1) increasing the number of registered donors, and 2) coordinating the donation process when actual donors become available.  When they learn of the availability of an organ or organs, OPOs evaluate the potential donors, check the deceased’s state donor registry, discuss donation with family members, contact UNOS, run a match list, and arrange for the recovery and transport of donated organs. They also provide bereavement support for donor families and volunteer opportunities for interested individuals.

OPOs employ a variety of staff including procurement coordinatorsrequestors, specialists in public relations, communication, and health education, as well as administrative personnel.  All of these people are specially trained for their jobs.

LifeSource is the OPO that serves more than 6 million people in communities across Minnesota, North Dakota, South Dakota and portions of western Wisconsin and I know them well.  As a consultant I worked closely with them for many years.  I can personally vouch for their expertise, compassion and effectiveness because I’ve seen them in action.

 

To be employed at LifeSource is not like employment elsewhere.  The people there don’t go to work every day, they embark on a journey to save lives.  That’s the attitude that permeates the entire organization.  Everything they do, every job in the organization is focused on one thing, saving lives. All you have to do to know their culture is to look into the eyes of any one of their people when they are talking about what they do and you will feel the sincerity and sense of mission.

Nearly three years ago the New York Times did a story on LifeSource. It is a magnificent piece that clearly illustrates what an OPO does and how their work affects each and every one of us. Once you read it, you’ll have a new understanding and appreciation for what these marvelous people do.

Read “After Death, Helping to Prolong Life” by clicking on this link  2012 New York Times article

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 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 a thttp://www.donatelife.net.  It only takes a few minutes.

Kidney Disease — What You Need To Know


kidney cartoon 2

Blog by Bob Aronson

My last blog was about kidney disease and so is this one.  “Steering Toward Hope” told about Johnny Racine the Canadian father of 16 year old twin boys and how they turned their 2007 Ford Mustang into an 800 horsepower fire breathing showpiece named “The Kidney Hope Car.”  Racine, his boys and the rest of the “Steering” team will travel the width of Canada to promote organ donation and to raise money for kidney research.

This post will take a different but complimentary approach.  The law of supply and demand applies to human organs as it does to many other commodities.  While we must work harder than ever to increase the supply we must concurrently do everything we can to reduce the demand.  It is the only way we will ever arrive at anything even close to resembling a balance of the two. 

The following paragraphs will examine kidney disease from several angles — from listening to how patients describe their illness to prevention, treatment and what the future holds.

Before I get into the real life, real people part of this blog, let me first lay out the facts about Chronic Kidney Disease (CKD).  It is a major health problem that affects more than 26 million Americans.  It is the ninth-leading cause of death in the U.S.   While the numbers are different elsewhere every country is having the same experience.  Whether you are from Singapore, New Zealand, Canada or Peru you will find that kidney disease is on the rise and there are not enough organs for the number of people who need transplants.

Of the 26 million Americans with kidney disease, about half a million face kidney failure, the condition that requires dialysis. Dialysis, though, is not a cure and in many cases is a stop gap effort while the patient awaits an organ transplant — but transplants are hard to get. 

At this writing in November of 2013 there are almost 100,000 people on the list awaiting kidney transplants but 5-6,000 of them die while waiting because the supply of organs not only does not meet demand it is falling farther and farther behind.  Unlike other transplants though, one can also get a kidney from a living donor but there aren’t enough of them either in fact the number of living kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need.  Regardless of the source the average wait time for a Kidney Transplant in the U.S. is 1,121 days. 

I’m hoping this blog will help people understand two things. 1) how to prevent kidney disease and 2) what to expect if you get it.  But first, I think it is important to discuss what causes CKD.

Causes of Kidney Disease

The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney’s filtering units.
  •  Inherited diseases, such as polycystic kidney disease, which causes large cysts in the kidneys that damage the surrounding tissue
  • Repeated urinary infections.
  • Pregnancy problems. Sometimes a narrowing of the womb can occur that prevents normal outflow of urine causing it instead to flow back up to the kidney causing infections and kidney damage.
  •  Lupus and other immune system diseases
  • Obstructions caused by kidney stones, tumors or, in men, an enlarged prostate gland.

High risk groups include those with diabetes, hypertension and family history of kidney failure.  African Americans, Hispanics, Pacific Islanders, American Indians and senior citizens are at increased risk.

Before we get into the details of kidney disease and what to do if you have it, let us first discuss how to avoid it.  While there is no sure fire way to prevent kidney problems there are many very effective steps you can take because lifestyle can be a great contributor to the development of all diseases.

Avoiding Kidney Disease

national kidney foundation logoThe National Kidney Foundation has the following guidelines to reduce the risk of developing kidney disease:

  • Reduce sodium intake: Americans consume too much sodium (salt)
  • Limit red meat: Diets high in protein – especially those with animal protein – may harm the kidneys. Red meat is also high in saturated fat.
  • Avoid soda: Sugar-sweetened drinks, like sodas, are high in calories and contain no nutritious value. Additionally, colas have phosphorus additives which can damage kidneys.
  • Give up processed foods: Potato chips, crackers, cheese spreads, instant potato mix, and deli meats are all examples of processed foods that are high in phosphorus additives and sodium – both of which can have a damaging effect on the kidneys.
  • Reduce sugar intake: Consuming too much sugar can result in diabetes or obesity – both linked to kidney disease.
  • Sit less and stand more: Recent research has linked sitting for 8 hours or more a day with developing kidney disease.
  • Exercise and lose weight: Diabetes is responsible for 44 percent of all new cases of kidney failure. Obesity and Type 2 diabetes are on the rise and can often be treated and reversed.
  • Manage high blood pressure: Both considered silent killers, many people don’t realize high blood pressure and kidney disease are linked. Controlling blood pressure levels can prevent kidney damage and failure.
  • Avoid long term use of kidney-toxic drugs: Over-the-counter (OTC) pain medications, nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen brand names (Motrin, Advil, and Nuprin).
  • Get tested: Ask your doctor for an annual urine test to check for protein in the urine, one of the earliest signs of kidney disease, and a blood test for creatinine

But…there’s a whole lot more to preventing kidney disease.  The Correct Diet Can Help Avoid Kidney Disease  http://www.medicalnewstoday.com/articles/259203.php (See this link for the full story.)

Bad diet choices and habits like smoking and obesity are linked to ajkd logoan increased risk for kidney disease, suggests a new study published in the American Journal of Kidney Disease.

A group of investigators, led by Alex Chang, MD, of Johns Hopkins University, discovered that people with regular kidneys whose diet quality was bad – high in processed and red meats, sodium, and sugar-sweetened beverages, and low in fruit, nuts, legumes, whole grains, and low-fat dairy – were more likely to develop kidney disease.

Just one percent of people without unhealthy diet or lifestyle choices developed protein in their urine – an early sign of kidney damage. On the other hand, 13% of participants who had at least three unhealthy factors such as obesity, smoking, and poor diet developed protein in their urine.

Obese people, i.e. those with a body mass index (BMI) of at least 30, were twice as likely to develop kidney disease, the authors reported. A poor diet independently influenced risk for chronic kidney disease after adjusting for weight and other influential factors.

In total, those who ended up with kidney disease were more likely…

  • to be African American
  • to have high blood pressure
  • to have diabetes
  • to have a family history of kidney disease
  • have a higher intake of soft drinks, fast food, and red meat compared to those who did not have kidney disease.

How it Feels to Have Kidney Disease

Now let’s get to the disease itself. The medical profession can describe it in terms no one can understand but I prefer to hear from patients.  What does it feel like to have kidney disease, how does your body change?  That’s a tough question to answer because so many people have no symptoms or symptoms that are so mild they don’t notice them but we did find some clear, understandable and frightening explanations.

We are going to look at symptoms of kidney failure from two perspectives. First the little tell-tale signs that something might be amiss and secondly the more specific complaints as told by patients.  Fist the little signs that indicate you might have kidney disease but don’t diagnose yourself.  See your physician.  You might have kidney disease if you:

  • feel more tired and have less energy
  • have trouble concentrating
  • have a poor appetite
  • have trouble sleeping
  • have muscle cramping at night
  • have swollen feet and ankles
  • have puffiness around your eyes, especially in the morning
  • have dry, itchy skin
  • Need to urinate more often, especially at night

Now let’s look at more serious conditions. If you are feeling anything like any of the following people you probably should see your doctor as soon as possible.

  • “I feel like I have the flu and am cold most of the time and. When I take my temperature, it is normal. I feel sort of dizzy, have a loss of appetite, food doesn’t have any taste, I have shortness of breath, no energy, and am nauseous.  It’s pretty miserable.”
  • “When I first got sick I really thought it was a normal cold. I had a fever, was sneezing, runny nose etc. Then it got worse to where I was throwing up, had blood coming out in spits, vomit, urine, etc. Then it became really hard to breath and I couldn’t lay down anymore as it would cause me to suffocate. I ended up in the hospital where they told me both my kidneys failed and liquid was pushed up to my lungs which was causing me to suffocate. I don’t want to scare anyone but please learn from my mistake of not going to the hospital for about 3 weeks after I first got the cold like symptoms. Get a check up even if you think it is a cold!”
  • “My kidney failure was discovered by accident through routine blood work at the time of my yearly physical. The first red flag was a high potassium level on two different blood draws over a two month period of time. I had observed several symptoms too,  The first symptom strangely was an “itchy back,” another one was an “ill feeling” — not being very hungry – sweating — breathlessness — a rapid heart rate — and discomfort (pain) in the location of the left kidney. These “symptoms” did not appear all at once or I would have seen a doctor. I now know that all of these are symptoms of chronic kidney failure. It is vital to be informed and educated.” 
  •  “I was diagnosed about three years ago with stage 3 kidney failure. I had no signs that I was aware of as I also have congestive heart failure.  Now, I itch alll over my body, perspire excessively and have extreme pain in my back, neck,shoulders and legs, as well as increased ankle swelling.”
  • “I did not realize I had quit urinating until my husband and I went on a long road trip. I didn’t feel the need to stop to urinate at all. I paid no attention at the time but now I remember that I was very nauseous, vomiting, and had horrible leg cramps. On the third day I went to the ER and was admitted to the ICU. After five dialysis treatments I started to recover.   I now measure my output just to be sure.”

For the sake of education let’s assume you have been diagnosed with kidney disease. What are your options?  There really are only two.  1) you can choose to allow your medical team to treat it with medication and ultimately dialysis.  2) a kidney transplant but you must qualify and only a medical team at a transplant center can determine if you are a candidate for a transplant.

If Dialysis is Ordered

Chronic kidney disease continually gets worse and eventually leads to end-stage renal disease, also known as kidney failure.

\Your doctor might recommend you begin dialysis treatments once you reach the point where you have only 10 to 15 percent of kidney function left.

With kidney failure, the toxins and excess fluid that your kidneys should be releasing begin to build up in your body. People suffering from kidney failure begin dialysis to help their bodies remove these wastes, salts and fluid.

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

Hemodialysis is typically performed at dialysis centers or hospitals but some clinics offer smaller devices for home use.

Hemodialysis, patients generally have an access point  in their arm to which the dialysis machine is connected.  On average It takes aobut four hours for the blood that is drawn from your body to be cleansed and returned.

Peritoneal dialysis is more likely to be done at home after you have a catheter placed in your stomach (a minor surgery).

There are two kinds of Peritoneal dialysis, 1) continuous ambulatory and 2) continuous cycling

Continuous cycling peritoneal dialysis is usually done at night. Before retiring you attach the dialysis machine tube to your catheter which pumps a solution into your stomach.  It stays there for a few hours so your stomach can act as a filter allowing waste and other fluids to pass through it into the solution.

Continuous ambulatory peritoneal dialysis is much different because you don’t need a  machine. You simply run dialysis solution into your abdomen through the catheter and after 4k to 6 hours drain it into a bag.  A physician can tell you how often during the day you need to do this

Risk Factors

There are several.  They include anemia, bone disease, high blood pressure and depression. Some patients on hemodialysis might have also have problems with low blood pressure.

Patients undergoing peritoneal dialysis are at risk of developing peritonitis which is an infection in the stomach lining. Your doctor will likely prescribe antibiotics to treat the problem.

 Got questions?  Many answers can be found here.

http://www.nwkidney.org/dialysis/startingOut/basic/faqs.html

 A Kidney Transplant

If it has been determined that a Kidney transplant is your only option this information may prove to be invaluable. 

KidneyBuzz.com encourages patients to stay as healthy as possible by managing stress, eating well, and staying active. It is important for patients to remain as well as possible during this time, so they are ready for kidney transplant surgery as soon as a donor organ becomes available. For patients who have a living organ donor, scheduling transplant surgery can take into account the health status of the recipient as well as other factors.

Manage your stress. Many patients constantly worry about their treatments, blood work results, future surgeries, etc. Education and support groups both online such as KidneyBuzz.com, and offline provide patients with tools and support to manage their stress and cope with the challenges associated with their condition. Recommended Reading: Will You be Ready when Your Time Comes for a Kidney Transplant? (this link and links below from KidneyBuzz)

There are other strategies that you can employ to expedite obtaining a Kidney Transplant including listing at more than one transplant center (Multi-Listing). Research has consistently shown that patients who are strategically Multiple Listed will greatly increase their chances of receiving a Kidney Transplant faster.   Nevertheless, only a mere 4.7% of individuals with CKD utilize the Multiple Listing technique.

KidneyBuzz Recommended Reading: “Ins-and -Outs” of Increasing your Chances of Getting a Kidney Faster

There are also website resources available that assist people with CKD to find Kidney Transplant Centers with the lowest average wait times that are the closest to where they live. These free user friendly website tools can be particularly helpful to people who are on a Kidney Transplant Waiting List in a high wait time area because it can significantly increase their access to  Kidney Transplant Centers options with far lower wait times. You can email KidneyBuzz.com at contact@kidneybuzz.com for more information and direct links to discussed sites.

Once you have determined the treatment track you will take the next logobig question most people have is, “How do I pay for the it?”  Well, if you have regular health insurance that might cover it.  If not the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/ offer this information”

In 1972, Congress passed legislation making people of any age with permanent kidney failure eligible for Medicare, a program that helps people age 65 or older and people with disabilities pay for medical care, usually up to 80 percent. The remaining 20 percent can still pose a significant financial burden on patients. Fortunately, other public and private resources can help. Anyone with permanent kidney failure who does not have adequate insurance coverage should seek the help of a certified or licensed social worker. Every dialysis and transplant center has a social worker who can help people with kidney failure locate and apply for financial assistance. Social workers who specialize in helping kidney patients are called nephrology social workers.

Patients can also enlist the assistance of the State Health Insurance Assistance Program (SHIP). The SHIP is a national program that provides free counseling and assistance to Medicare beneficiaries on a wide range of Medicare and supplemental insurance matters. Patients can find a state program by visiting shipnpr.shiptalk.org/shipprofile.aspx click to view disclaimer page.

Medicarecms logo

To qualify for Medicare on the basis of kidney failure, a person must require regular dialysis or have had a Medicare-covered kidney transplant and must have paid into Social Security through an employer-or be the child or spouse of someone who has or have worked under the Railroad Retirement Board, or as a government employee-or be the child or spouse of someone who has or already be receiving Social Security, Railroad Retirement, or Office of Personnel Management benefits.

The Original Medicare Plan has two parts: Part A is hospital insurance, and Part B is medical insurance. Part B covers most outpatient services, including kidney dialysis, doctors’ services, outpatient hospital services, and many other health services and supplies. While Part A has no premiums, most Part B services require premiums, deductibles, and coinsurance.

Some people who are not eligible for Medicare because they have not worked at a job that pays into Social Security may still be eligible to buy Medicare coverage by paying premiums for Part A.

For more information check with the NKUDIC (link posted above)

935503_10201217871274032_357839664_nJay Robare is a friend and a member of my Facebook group Organ Transplant Initiative.  He is the talent behind the design of the OTI logo.  Jay is legally blind and has been on the kidney transplant list for about four years.  He wrote this about two years ago when he lived in Fort Lauderdale, Florida.  He is now a resident of Philadelphia, Pennsylvania.  Here’s Jay’s story….he’s still waiting.

The Jay Robare Story

Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that all the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literally killing us.

****Editors note.  (When Jay lived in fort Lauderdale he was on Peritoneal Dialyisis…he is no longer but I included it because patient should know about it.)

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an eye on my health and changes in my DNA.

*** Editors Note (Jay is now living in Philadelphia and is on hemodialysis which limits his liquid intake.  He is desperately trying to find a living donor.  This journey has been very hard on Jay yet somehow he manages to keep his spirits up.

The Kidney Transplant

kidneysEveryone has two kidneys, each the size of a fist and they have a very important job to do. They filter waste and remove extra water from your blood to make urine.  But…there’s more.  Your kidneys also control your blood pressure and make hormones that your body needs to stay healthy. 

During a kidney transplant

Kidney transplants are performed with general anesthesia, so you’re not aware during the procedure. The surgical team monitors your heart rate, blood pressure and blood oxygen level throughout the procedure.

During the surgery:

  • The surgeon makes an incision and places the new kidnKidney transplantey in your lower abdomen. Unless your own kidneys are causing complications such as high blood pressure or infection, they are left in place.
  • The blood vessels of the new kidney are attached to blood vessels in the lower part of your abdomen, just above one of your legs.
  • The new kidney’s ureter — the tube that links the kidney to the bladder — is connected to your bladder.

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

  1. Spend several days to a week in the hospital. Doctors and nurses monitor your condition in the hospital’s transplant recovery area to watch for signs of complications. Your new kidney will make urine like your own kidneys did when they were healthy. Often this starts immediately. In other cases it takes several days. Expect soreness or pain around the incision site while you’re healing.
  2. Have frequent checkups as you continue recovering. After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you. During this time, if you live in another town, you may need to make arrangements to stay close to the transplant center.
  3. Take medications the rest of your life. You’ll take a number of medications after your kidney transplant. Drugs called immunosuppressants help keep your immune system from attacking your new kidney. Additional drugs help reduce the risk of other complications, such as infection, after your transplant.]

http://www.mayoclinic.org/kidney-transplant/kidney-transplant-procedure.html

The Future

What does the future hold?  It is easy to speculate about what the future holds and absolutely impossible to be accurate.  We just don’t know.  Is there promise? Yes! There are many promising developments taking place in laboratories around the world every day.  We won’t go in to all of them because if history is any indicator most of those experiments will fail.  There are some, though, that hold some promise at least for now…like this one.

Intravenous Kidney Cell Transplant Experiments Raise Hope for Future Human Kidney Failure Treatments

May 31, 2012 — Indiana University School of Medicine scientists have successfully transplanted primary kidney cells intravenously to treat renal failure in rats, pointing the way to a possible future alternative to kidney transplants and expensive dialysis treatments in humans.

The researchers, Katherine J. Kelly, M.D., associate professor of medicine, and Jesus Dominguez, M.D., professor of medicine, genetically modified the cells in the laboratory to produce a protein — called SAA — that plays an important role in renal cell growth, embryonic kidney development and kidney regeneration after an injury. Modified cells found their way to the appropriate locations of the damaged kidneys, resulting in regeneration of tissue and improved function in the kidney.

The researchers’ work has been accepted for publication in the American Journal of Physiology — Renal Physiology, which published an advance online version of the paper on May 16.  You can read more here http://www.sciencedaily.com/releases/2012/05/120531135645.htm

-0-

Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our 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. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.

 

A Proposal To Legalize the Sale of Human Organs


By Bob Aronson

Plan by David F. Diamond

The story of the organ shortage is all too familiar; supply just can’t catch demand. 

bring your own organs

Since 1984 when Tennessee Congressman Al Gore (D) and Utah Senator Orin Hatch (R) authored and passed the National Organ Transplant Act (NOTA) there have not  been enough organs.  The act makes “Altruistic” donation the law of the land simply meaning that patients who need transplants must depend on the good will of others who upon their deaths will voluntarily donate their organs. 

 After nearly 30 years only 40% of Americans have shown that good will by registering as organ donors.  If the goal was to provide organs for all who needed them then the experiment failed.  I cannot believe that either Gore or Hatch would have supported a plan that would allow thousands to die.

Today there are about 120,000 people on the national transplant list and so far in the first 7 months of this year there have been only 11,600 transplants done. Obviously the system isn’t working the way Gore and Hatch had hoped.

So what to do?  There have been scores of proposals put forward to change the law.  Proposals which include “Opt-out” or “Presumed consent” which means everyone would automatically be considered an organ donor unless they chose to “Opt Out” (our current system is “Opt In”).   Also proposed are programs that would offer transplants only to registered organ donors; mandatory donation; compensation of sorts that would pay funeral expenses or perhaps provide scholarships and outright commercial sales of human organs.  All of those options have been discussed by lawmakers, medical ethicists and the people who run the national transplant program and they have all been dismissed as unethical, unmanageable or just plain unworkable and people continue to die.

NOTA bulletsWhen NOTA was established the authors made it quite clear that organ sales would not be allowed.  NOTA specifically states “it shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” The penalty of breaking this law is a fine of $50,000 or up to five years in prison, or both,   So that readers have accurate information before them, here is that section of NOTA:

From the National Organ Transplant Act of 1984, as amended through February 1, 2010:
TITLE 42 > CHAPTER 6A > SUBCHAPTER II > Part H > § 274e
Prohibition of organ purchases
(a) Prohibition

body parts for sale
It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. The preceding sentence does not apply with respect to human organ paired donation.
(b) Penalties
Any person who violates subsection (a) of this section shall be fined not more than $50,000 or imprisoned not more than five years, or both.
(c) Definitions
For purposes of subsection (a) of this section:
(1) The term “human organ” means the human (including fetal) kidney, liver, heart, lung, pancreas, bone marrow, cornea, eye, bone, and skin or any subpart thereof and any other human organ (or any subpart thereof, including that derived from a fetus) specified by the Secretary of Health and Human Services by regulation.
(2) The term “valuable consideration” does not include the reasonable payments associated with the removal, transportation, implantation, processing, preservation, quality control, and storage of a human organ or the expenses of travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ.

For the past nearly 30 years, the prohibition against buying and selling organs in the United States has been the law of the land.   Efforts to provide financial incentives as a means of increasing deceased donation, for example, have failed because of what was determined as clear Congressional intent that organs not be placed in a commercial market.

When you consider the strong language in NOTA with regard to organ sales one would think the debate would be dead.  Well, it’s not and that’s because of what appears to be a contradiction in public policy.  The law says one thing but we seem to practice in some cases what the law disallows.   

We are prohibited from selling human organs but not hair, sperm, blood, and other “replenishable” body parts.   The question of commercialization of human organs remains unsettled; not so much because of a public desire to sell their organs but rather because of the explosive growth of the biotechnology industry.  

Advances in that arena have generated uses and needs for body tissues that were previously unimaginable. And there’s the rub.  While the law bans the buying and selling of organs for transplantation, they have not banned their use in research, education, and commercial endeavors.  So the bottom line is that you can buy body parts legally but not for transplantation.

David F. DiamondEnter David Diamond and his proposal for legalizing the sale of human organs.  I met David on the internet.  We share backgrounds in politics and broadcasting and in trying to save lives through organ transplantation.  

By publishing his proposal I am neither endorsing nor opposing it.  I am posting it because I believe in an informed public and that he has the right to be heard and have his ideas discussed.

David has not had a transplant nor is he a candidate for one, he simply has an interest in the issue that began with a radio interview. Here’s David Diamonds story in his words:

“In 1984 I was doing a radio talk show in Memphis TN.  My guest one day was the local director of the Organ Procurement group I asked him “Well, couldn’t people buy an organ if they wanted to?”

He answered that was illegal under the new law.  The authors, he said, wanted to prevent the development of a black market.

I didn’t think to ask the logical follow-up question:  “But won’t that seriously limit the supply.”

Days and weeks and months thereafter, the question nagged at me.    Finally I began to develop a solution that I thought could solve the shortage.  And so I talked it up for 20 plus years, getting nowhere fast!  Folks didn’t want to consider or talk about such a “ghoulish” subject.

In 2008 before the Republican Presidential Primary, I had a brainstorm.  I thought, “One way to get publicity for anything is to run for President of the United States but I’ll do it on just the issue of legalizing organ sales.”

Well,  I did it on a shoestring and sure enough I got some publicity and even got a story in the Des Moines, Iowa paper.  Unfortunately John McCain got the nomination and my plan was no longer of interest to the news media.

I say the idea is still good.  I’ve tried to improve it along the way; tried to address all the obvious objections.  But I’m sure I’ve missed a few.  Now you get to give us your thoughts.  Let’s work together and create a huge supply of organs.


The David Diamond Plan to increase the supply of transplantable organs by making the sale of human organs legal in the United States.

The Federal Organ Transplant law needs to be changed.

The Federal Organ Transplant Law enacted in 1984 provides that only donated organs may be used. The following plan to increase the supply of organs for transplant was developed in subsequent years by David F. Diamond of Memphis, Tennessee.
======0======

The shortage of organs is taking the lives of almost 7,000 people unnecessarily each year. Donation is good. It is the highest altruistic step that a person can contemplate. However, for a number of reasons, many people are not willing to donate. The solution is to provide a regulated system allowing the organs of cadavers to be sold as follows:

A. A contract can provide that when a person has decided, for whatever reasons, not to donate organs, he or she (hereafter: the provider) can commit to a plan to have the organs sold if and when the provider is brain dead. This contract will also be signed by the next of kin, spouse or nearest living relative so that that party understands the purpose of the contract and agrees that they will not oppose its implementation when the provider dies. A provider’s option to cancel the contract at any time prior to the provider’s death will be included in the contract. The use of this contract will allow the provider to leave an estate to his heirs or a designated charity. A provider, with few or no assets, might otherwise have none to leave when he or she passed.

B. The sale of organs can be conducted by a broker, attorney or individual (hereafter: an agent) designated by the provider. A licensing procedure would establish that the agent would be certified as fiscally responsible and having financial integrity. Upon determination of brain death, the agent selected by the provider, using email, fax or phones, would immediately advise interested buyers of an organ’s availability and condition, etc. Time would be of the essence, of course. Appropriate compensation to the agent, such as a commission for services provided, would be set forth in the contract. Buyers whose bids were accepted would send payment by wire transfer, cashier’s check or other means approved in the law.

C. The party designated by the provider must maintain a public record (like a broadcaster’s log which is available for public viewing) specifying the individual who gets the organs, how much is being paid and the identification of the provider. The purpose of this transparency is to eliminate the need for a black market, and to stimulate public awareness. If there is a public record, as soon as organ sales begin, the news media will undoubtedly write about it pointing out how much money was involved in the transactions and stressing how much money goes to the heirs. This will persuade a lot of additional people to agree to such a contract, thus increasing supply exponentially. Through the action of the law of supply and demand, the increased supply will cause prices to decrease to a level most people will consider reasonable. Unless you allow prices to be set by the market process you put a limit on the number of organs that might become available. Any fixed price, set by government or a special agency, would diminish the supply which would defeat the goal of making the most organs available. That would cause some individuals to decide not to participate. But if they knew that the organs they might provide are going to bring whatever the market process allows, they’ll have every incentive to take part.

D. The organs would have to be sold only for transplant to U. S. citizens in order to avoid foreigners from bidding up the price and reducing the supply to Americans. Of course, if other countries should adopt model legislation such as ours then we could reciprocate and become partners with them since their organ supply could be shared with ours.

E. The poor will not be discriminated against. They will have access to organs because the law will provide that, just as in Medicare or Medicaid presently, the government will pay for any medical procedure or supplies that the patient needs, upon a doctor’s certification that it is medically necessary. The government would buy organs on the market for those with Medicare or Medicaid unless donated organs were available. The same principle will apply for those with health insurance. And the wealthy, who may choose to be self insured, would be free to arrange for organs in the same market. Of course, people would still be free to donate organs. And participation by providers in the futures contracts would be entirely voluntary.

F. Presently those uninsured or poor, not covered by Medicare or Medicaid, have to raise tens of thousands of dollars before hospitals or transplant surgeons will help them. The added cost of an organ can also be raised in the same way, or the law can require our government to cover that cost, since it will be less costly over time than dealing with whatever the patient’s medical expenses would be otherwise.

G. The plan will require providers to have their medical records maintained by their doctors beginning at least as soon as a futures contract is signed. It would be made available immediately to any parties potentially buying an organ from that cadaver. The purpose, and the result, would be to assure a better, safer organ supply. This plan does not contemplate any sale of kidneys or parts of livers from a living person. There are risks in having such surgery and for that reason and others, we set that aside and take no position on that question. Sometimes, under current law, it is the right thing to do, depending on the circumstances. But in point of fact, the need for such organs will be adequately supplied with adoption of my plan.

=========0=========

The proposal I’m offering will be, of course, subject to improvement and modification by the federal legislature. Meanwhile, I welcome and will entertain seriously any changes so long as they do no damage to this essential requirement: We have to let the law of supply and demand work in order to maximize the number of organs that will be made available.

David Diamond 82, lives in Memphis, Tennessee.  He is  a retired TV and radio commercial spokesman, an actor, a freelance broadcast sports producer, and a marketing and public relations consultant.

Following four years of service (1953-1957) as a Russian language technician in the U.S. Air Force, Diamond studied foreign affairs at George Washington University in the late 1950’s. He also worked for Maryland state senator Newton I. Steers, Jr: as congressional and state senatorial campaign manager.

Other endeavors include:

·         Serving as executive assistant and deputy commissioner in the Maryland Insurance Department;

·         Legislative assistant in the state capitol in Annapolis.

·         Office manager for U.S Senator Charles McC Mathias.

·         News anchor for WTAE radio; radio/TV

·         News director for the 1973 National Boy Scout Jamboree;

·         Managed a successful congressional primary campaign for Robert Casey

·         From 1982 to 1991 he was the national commercial voice for the Levitz Furniture chain.

IF THE COMMENT SECTION IS NOT VISIBLE GO TO THE TOP OF THE PAGE AND CLICK ON THE NUMBER IN THE CIRCLE IN THE RIGHT HAND CORNER AND IT WILL APPEAR OR.you can email David F. Diamond at david.f.diamond@gmail.com or Bob Aronson at bob@baronson.org 

Bob informal 3Bob 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 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. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also 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 I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a 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 se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

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

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

IF THE COMMENT SECTION IS NOT VISIBLE GO TO THE TOP OF THE PAGE AND CLICK ON THE NUMBER IN THE CIRCLE IN THE RIGHT HAND CORNER AND IT WILL APPEAR OR.you can email David F. Diamond at david.f.diamond@gmail.com or Bob Aronson at bob@baronson.org 


Mental Illness Myths Exploded — Music Therapy Can Help


“Music is a moral law. It gives soul to the universe, wings to the mind, flight to the imagination, and charm and gaiety to life and to everything.”

Plato

Mental Illness is as real as cancer — you can’t “think” your way out of it.

By Bob Aronson

Get over it!  emotional baggageIt’s all in your head,” was and is a common utterance by those who don’t understand that just because it is in your head doesn’t make it less real.  Will power cannot dislodge demons of the mind any more effectively than it can stop cancer.   Both are real, both are serious and treatment for both is available and necessary.

The difference between the two is that while we accept illnesses of the body as real illnesses we, as a society, have not yet fully accepted mental illness as a disease and until we do greater societal problems will ensue.

Both pre and post transplant patients suffer from depression.  Some suffer from other mental illnesses as well.  Just because we need or have had an organ or tissue transplants doesn’t mean we aren’t subject to all the ills that befall everyone else.  In reality we may be more susceptible because we have come face to face with death.  Many of us live with it for years.  You can’t get on the transplant list unless you have an end stage disease. That’s fancy doctor talk for, “You are dying.”

This blog is about one approach to helping people with emotional or other problems involving the brain…music.  Before we get into solutions, though, it is important to understand the problem.pencil optimism

The U.S. Centers for Disease Control (CDC) says that although mental health and mental illness are related, they represent different psychological states.

Mental health isa state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.”1 It is estimated that only about 17% of U.S adults are considered to be in a state of optimal mental health.2 There is emerging evidence that positive mental health is associated with improved outcomes.

Mental illness is defined as “collectively all diagnosable mental disorders” or “health conditions that are characterized by alterations in thinking, mood, or behavior (or some combination thereof) associated with distress and/or impaired functioning.”2 Depression is the most common type of mental illness, affecting more than 26% of the U.S. adult population.3 It has been estimated that by the year 2020, depression will be the second leading cause of disabimental illness montagelity throughout the world, trailing only ischemic heart disease.4

Evidence has shown that mental disorders, especially depressive disorders, are strongly related to the occurrence, successful treatment, and course of many chronic diseases including diabetes, cancer, cardiovascular disease, asthma, and obesity5 and many risk behaviors for chronic disease; such as, physical inactivity, smoking, excessive drinking, and insufficient sleep.

Unfortunately public acceptance of mental illness treatment has been slow in coming despite the fact that many effective treatments have existed for a long time.  Often people who are affected don’t seek help because of the embarrassment of being labeled “mentally ill”

Mental Health America (MHA) is trying to dispel the myths surrounding mental illness.  The five most common are: (http://www.mentalhealthamerica.net/go/workplacewellness/5myths )

busting the myths

Myth #1: Mental illness is the same as mental retardation.

The Facts: Mental illness and mental retardation are entirely different disorders. Mental retardation is primarily characterized by limitations in intellectual functioning, while intellectual functioning varies among persons with persistent mental illness just as it does across the general population.

Myth #2: Recovery from mental illness is impossible.

The Facts: While these illnesses are persistent, research has shown that with treatment, the majority of people with mental illnesses achieve genuine improvement in their symptoms over time and lead stable, productive lives. As the treatment of mental illness has advanced, the focus of treatment has shifted from simply minimizing symptoms to true recovery-that is, the reintegration into mainstream society, including (and perhaps most importantly) the world of work.

Myth #3: Mentally ill and mentally restored employees (that is, those in whom mental illness is effectively treated) tend to be second-rate workers.

The Facts: Far from being inferior workers, individuals with mental illnesses may in fact be superior in many ways to their co-workers without mental illness. Employers who have hired these individuals report that their attendance and punctuality exceed the norm, and that their motivation, work quality, and job tenure is as good as — or better than — that of other employees. Research has shown that there is no difference between the productivity of workers with and without mental illness.

Myth #4: People with psychotic disabilities cannot tolerate stress on the job.

The Facts: The response to job-related stress, and precisely which factors will be perceived as stressful, vary among individuals with psychiatric disabilities just as they do among people without such disabilities. For all workers — with or without psychiatric disabilities — productivity is optimized when there is a close match between the employee’s needs and his or her working conditions.

Myth #5: Mentally ill and mentally restored individuals are unpredictable, potentially violent, and dangerous.

The Facts: This myth is reinforced by media portrayals of people with mental illnesses as frequently and randomly violent. However, a research literature review conducted at Cornell University found absolutely no evidence to support such portrayals. The fact is that the vast majority of individuals with psychiatric disabilities are neither dangerous nor violent.

we don't want you

So, Given that we understand the myths and can deal with them let’s look at one form of therapy that can be and has been very effective in some cases.

While mental illness was not an issue, a serious brain injury was in the case of former congresswoman Gabby Gifford  Gabby Giffodwho was seriously wounded when shot in the head in an attempted assassination.   Her therapists have used music to help her learn to walk and speak again, as well as give her an emotional boost along her stunningly difficult path.  If you want to learn more about the Gifford story click on this link from ABC TV news.

http://tinyurl.com/n3cuapy

The power of music

Music can help rewire the brain after a traumatic injury, stroke or accident. In all of us, Our own playlist of personal favorites can help to:colorful notes on staff

  • Trigger memories. Think of jingles that remind you of a company’s name, or that song that always takes you back to your senior year of high school.
  • Promote learning. Next time you have a phone number or list of terms to remember, try putting it to music. Elicit emotions. The movie industry has long known how to use background music to heighten terrifying, tragic or exhilarating moments.
  • Provide motivation. Chores can become an entirely different experience when set to an energetic beat. Improve coordination. If you hear music while you’re walking, you can’t help but to walk to the beat. That’s a biological process called “entraining,” in which a rhythm and melody pull us into synchrony with them.
  • Reduce stress and pain. Calming music can entrain you to breathe deeply and the memories music elicits can remind you of happier, more peaceful times and places.Source: Concetta Tomaino, executive director of the Institute for Music and Neurologic Function at the Beth Abraham Family of Health Services in New York.

Music holds a unique role in human life. Its rhythms help organize movements — almost no one can resist a good beat. Music brings up memories. And music, it seems, can help retrain the speech centers of the brain.

I could go on here and offer quote after quote about what music therapy is and does but the best way to for readers to know how it works is to listen to what patients have to say.  The American Music Therapy Association (AMTA) http://www.musictherapy.org/ has a section on its web site where patients relate their experience with music therapy.  Here are just a few, you can read more by going to the AMTA site.

Parent testimonial, written by Tamera Norris

Music has the power to enrich the mind of a child with autism. Many people with autism have limited verbal expression. They live a life of involuntary silence.road to recovery “After silence, that which comes nearest to expressing the inexpressible is music.” (Aldous Huxley) That is the reason why “music (became) the shorthand of (William’s) emotions.” (Leo Tolstoy) It gave him opportunities for speech, emotional contact and mental focus.

From the age of four through his current age of 16, William has taken a music bath once or twice a week at The Music Settlement. As Oliver Wendell Holmes once said, “…a music bath… is to the soul what the water bath is to the body.” Music has flown out, immersing restless feelings, calming William, minimizing his hesitation. Then it ebbed and he met the eyes of the therapist. With the guidance of Ronna Kaplan and other music therapists, William has developed, encouraged to tune his fine and gross motor skills. The therapy program made use of live and recorded music, pre-planned dialogues for the clients and sound effects. While learning to play instruments, William also learned life skills. “Music (became the soundtrack of (his) life.” (Dick Clark)

Being born with autism makes it difficult to interact with others or communicate verbally. It causes the affected person to be unaware of reacting in ways that others do not commonly react in society. Music therapy provided William a non-threatening environment in which to build relationships with peers, express himself verbally and nonverbally and learn to participate in socially acceptable ways. This was achieved through group therapy, as well as individualized sessions. Both forms were ideal for William, because individual lessons allowed him to learn at his own pace. These lessons were tailored to meet his needs. They helped him to learn to read music, follow a rhythm, and to respect the need to display the proper behavior in the proper situation. Small group therapy required him to learn to take turns and to be a focused member of a team. He had to use proper questions and verbal responses. He had to learn to be both leader and supportive member. This even carried over to life outside of The Music Settlement, as William auditioned for and earned a position on a regular team of drummers for his school. He was able to perform at the House of Blues in front of a large, noisy audience, with no problem. This was not something that he would have been able to withstand before his experiences in music therapy.

We are very pleased and thankful for the progress that William has made over the years and we foresee him continuing to flourish with additional music therapy. The combination of an excellent music therapy curriculum and an enthusiastic, care-giving staff, has enabled William not to just, “…go where a path might lead, but instead to go where there is no path and leave (his) trail.”  (Ralph Waldo Emerson)

I am closing with a short poem, expressing my feelings about The Music Settlement and its staff. It is simply entitled, Thank You.

Thank You

Music therapy teaches
Social skills.
It’s about communication.
It’s about what William’s taught,
In nurturing situations.
He’s learned patience
And tolerance,
Growing in many ways.
His social skills developed,
Made him what he is today.
So, thank you for your guidance,
As only music can touch.
Thank you for reaching our William,
Because it means so much.

A physician/patient  talks about his recovery.

R.B.Fratianne, MD.  Prof. of Surgery, CWRU Dir. Emeritus, Burn Center Metrohealth Med. Center.  I was deeply honored by the gracious invitation to attend this year’s annual meeting of The AMTA and receive the Advocate of the Year Award. At the meeting, I was impressed by the level of enthusiasm and dedication to excellence shown by the highly trained professionals I met. They radiated pride in their work coupled with an intense sense of fellowship which made me feel welcome and respected – even though I was a rookie. For this I am very grateful.

I learned the value of music therapy first-hand when I had a brain tumor diagnosed several years ago. Fortunately it was not a cancer, piano keyboardbut my recovery from major cranial surgery was slow and difficult. I was given physical/occupational and speech therapy. The music therapist working with me on the burn unit knew I played piano by ear and she suggested I work out on the piano as part of my therapy. At first everything seemed strange and “nothing” worked. Molly wouldn’t let me quit. I wanted to – it was frustrating! Slowly I began the feel at home at the keyboard and all my other therapies started to become more effective. I could “think” better.

Music therapy forced my brain to respond to the complex patterns of pitch, tempo and melody, and forced me to integrate motor function with the psycho-acoustic properties of what I was trying to express. I promptly regained my surgical skills at my pre-operative level and returned to practice on the burn unit. This response is known as neuro-plasticity; the unique ability of the brain to bypass injured areas and to re-teach the damaged brain how to regain more normal function.

I believe music therapists play an important, but often overlooked, role in helping patients cope with the effects of illness, pain, loneliness and fearful apprehension about the future of their health. Unfortunately all too often, music therapy is not reimbursed by insurance companies and many hospitals, therefore, do not use this modality of patient care. Other traditional forms of therapy, i.e. physical/occupational/speech etc., have demonstrated they are a cost effective addition to patient recovery. Insurance companies are therefore willing to compensate hospitals for these services and they generate income for the medical facility.

Music therapy professionals MUST produce evidence that their services provide a cost effective addition to other forms of care. THAT MEANS GOOD SCIENTIFIC RESEARCH must be carried out to demonstrate what we all believe. It is not enough to show a reduction in pain and anxiety with music therapy. Research must show a reduction in length of stay or improved patient outcomes for patients such as those sustaining head trauma/post traumatic stress disorder etc. Only then will insurance companies agree to reimburse hospitals/nursing homes for music therapy services; and more medical facilities will be able to incorporate music therapy as a standard of care. Then patients will receive the services we all know will benefit them. May God Speed your efforts on behalf of the patients you serve.

 

The Knot at the End of the Rope

Submitted by Florence Cohen

 end of the rope

My father lived life with strength and determination.  As complications associated with diabetes diminished his physical capabilities, his indomitable will to combat the disease fervently hammered away.  A WW II Navy Seal, Joe Altman lived by a simple rule; when you get to the end of your rope, tie a knot and hang on.

When dementia struck hard and violently broke through Dad’s spirit, music therapist Alessandro Ricciarelli entered his life.  Armed with six strings attached to a wooden guitar, Alessandro surpassed the capabilities of the most sophisticated medical technology.

Each time Alessandro walked through the door, an invisible wall formed around them, creating a comfortable space in which a trusting bond of friendship would quickly form.  Alessandro brought with him happiness, encouragement, added a sense of meaning and purpose to Dad’s life, and, in doing so, resuscitated his spirit.  In a most gentle way, Alessandro treated Joe with the utmost dignity and respect.

Alessandro’s dedication was not limited to actual hospital visits; he took personal time to learn songs that were relevant to Dad and made recordings of their sessions together to be enjoyed at any given time.  Alessandro appreciated the power of positive thoughts, and with his kind words, a smile, compassion, and a true desire to make Dad happy, he encouraged Dad’s participation, leaving us with cherished memories of my father having one last chance to express himself through music, smiling and enjoying life.

In a very real sense, Alessandro was that knot at the end of the rope on to which Dad grabbed.  I am forever grateful to the Music Therapy Program at NYU Medical Center, more specifically, to Mr. Alessandro Ricciarelli.

Obviously music therapy works..at least in some cases with some people but then not all therapy works all the time in all cases.

I will be posting other blogs on the subject of mental illness and the therapies available to those afflicted.  Just know there is help available.  It may take some time to find it and it may turn out to be a combination of therapy or therapies and/or medication.  There is help but you have to find it. It is up to you to seek it out because it is very unlikely a miracle will knock on your door and say, “May I come in?  I’m the cure for all that ails you.”  If that does happen, don’t let them in.  It won’t be real.

Bob informal 3Bob 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 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. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  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  also 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 I will send the show and book ASAP.

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  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a 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 se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

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

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, “Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

Immunization (Vaccinations) Can Prevent the Need for a Transplant.


By Bob Aronson

We could significantly cut the demand for transplantable organs if we took better care of our bodies.  The supply/demand concept is as applicable to human organs as it is to the sale of cars.  But, with cars we can meet increased demand by building more cars.  Unfortunately we can’t build more organs and we can’t seem to persuade the 60% of the population that are not organ donors to sign up so the answer is …. reduce the demand.   That goal, though, is much easier said than done.   To accomplish it will take a major change in attitude and behavior.heart full of love

According to a health study published in The Atlantic  in January of this year the U.S. is dead last among 17 “advanced” nations {http://tinyurl.com/agglg8s}.   The results surprised even the researchers. To their alarm, they said, they found a “strikingly consistent and pervasive” pattern of poorer health at all stages of (American) life, from infancy to childhood to adolescence to young adulthood to middle and old age. Compared to people in other developed nations, Americans die far more often from injuries and homicides. We suffer more deaths from alcohol and other drugs, and endure some of the worst rates of heart disease, lung disease, obesity, and diabetes.

downward arrow

The study goes on to say, “Among the most striking of the report’s findings are that, among the countries studied, the U.S. has:

The report does reveal bright spots: Americans are more likely to survive cancer or stroke, and if we live to age 75 we’re likely to keep on living longer than others. But these advances are dwarfed by the grave shortcomings.”

Most of our ills are brought on by a lifestyle in which we eat wrong, don’t exercise,  and abuse our bodies in a million other ways, like smoking and drinking too much.   We can prevent many of the ills that kill us but as a nation we sure don’t try very hard.  One of the simple, readily available precautions is immunization.  But, because of rumors, distortions and outright lies many have become suspicious of vaccinations and not only refuse to get them but also refuse deny their children what could be life saving measures.

Here are just a couple of the myths surrounding vaccinations.

Myth 1: Better hygiene and sanitation will make diseases disappear – vaccines are not necessary. FALSE

Myth 2: Vaccines have several damaging and long-term side-effects that are yet unknown. Vaccination can even be fatal. FALSE

Myth 3: The combined vaccine against diphtheria, tetanus and pertussis (whooping cough) and the vaccine against poliomyelitis cause sudden infant death syndrome. FALSE

We’ll address those myths and seven others shortly but first…here’s what the U.S Centers  for Disease Control (CDC) says about the issue.

centers for disease controlDiseases are becoming rare due to vaccinations.

It’s true, some diseases (like polio and diphtheria) are becoming very rare in the U.S. Of course, they are becoming rare largely because we have been vaccinating against them. But it is still reasonable to ask whether it’s really worthwhile to keep vaccinating.

It’s much like bailing out a boat with a slow leak. When we started bailing, the boat was filled with water. But we have been bailing fast and hard, and now it is almost dry. We could say, “Good. The boat is dry now, so we can throw away the bucket and relax.” But the leak hasn’t stopped. Before long we’d notice a little water seeping in, and soon it might be back up to the same level as when we started.

Keep immunizing until disease is eliminated.

Unless we can “stop the leak” (eliminate the disease), it is important to keep immunizing. Even if there are only a few cases of disease today, if we take away the protection given by vaccination, more and more people will be infected and will spread disease to others. Soon we will undo the progress we have made over the years.

serum and syinge

Japan reduced pertussis vaccinations, and an epidemic occurred.

In 1974, Japan had a successful pertussis (whooping cough) vaccination program, with nearly 80% of Japanese children vaccinated. That year only 393 cases of pertussis were reported in the entire country, and there were no deaths from pertussis. But then rumors began to spread that pertussis vaccination was no longer needed and that the vaccine was not safe, and by 1976 only 10% of infants were getting vaccinated. In 1979 Japan suffered a major pertussis epidemic, with more than 13,000 cases of whooping cough and 41 deaths. In 1981 the government began vaccinating with acellular pertussis vaccine, and the number of pertussis cases dropped again.

What if we stopped vaccinating?

So what would happen if we stopped vaccinating here? Diseases that are almost unknown would stage a comeback. Before long we would see epidemics of diseases that are nearly under control today. More children would get sick and more would die. Many if not all of these diseases can lead to organ failure or the need for tissue.  This is a partial list of diseases that can be prevented by vaccines:

Why are vaccines under fire? Some experts say it’s due to their success. “It’s the natural evolution of a vaccine program,” says Paul Offit, M.D., chief of infectious diseases and director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. “As you eliminate the diseases, people are not as compelled to get vaccines.” Adds Kathryn Edwards, M.D., spokesperson for the National Network for Immunization Information, “Many diseases are out of sight and then out of mind. So people don’t see the value of vaccines.”

Yet high immunization rates are necessary to keep diseases like measles and even polio from making a comeback.

Here are the ten myths/truths about vaccines from the World Health Organization.  This list is supported and disseminated by nearly every nation and medical association in the world including the United States http://www.who.int/features/qa/84/en/

Q: What are some of the myths – and facts – about vaccination?

A: Myth 1: Better hygiene and sanitation will make diseases disappear – vaccines are not necessary. FALSE

Fact 1: The diseases we can vaccinate against will return if we stop vaccination programmes. While better hygiene, hand washing and clean water help protect people from infectious diseases, many infections can spread regardless of how clean we are. If people are not vaccinated, diseases that have become uncommon, such as polio and measles, will quickly reappear.

Myth 2: Vaccines have several damaging and long-term side-effects that are yet unknown. Vaccination can even be fatal. FALSE

Fact 2: Vaccines are very safe. Most vaccine reactions are usually minor and temporary, such as a sore arm or mild fever. Very serious health events are extremely rare and are carefully monitored and investigated. You are far more likely to be seriously injured by a vaccine-preventable disease than by a vaccine. For example, in the case of polio, the disease can cause paralysis, measles can cause encephalitis and blindness, and some vaccine-preventable diseases can even result in death. While any serious injury or death caused by vaccines is one too many, the benefits of vaccination greatly outweigh the risk, and many, many more injuries and deaths would occur without vaccines.

Myth 3: The combined vaccine against diphtheria, tetanus and pertussis (whooping cough) and the vaccine against poliomyelitis cause sudden infant death syndrome. FALSE

Fact 3: There is no causal link between the administering of the vaccines and sudden infant death, however, these vaccines are administered at a time when babies can suffer sudden infant death syndrome (SIDS).,. In other words, the SIDS deaths are co-incidental to vaccination and would have occurred even if no vaccinations had been given. It is important to remember that these four diseases are life-threatening and babies who are not vaccinated against them are at serious risk of death or serious disability.

Myth 4: Vaccine-preventable diseases are almost eradicated in my country, so there is no reason to be vaccinated. FALSE

Fact 4: Although vaccine preventable diseases have become uncommon in many countries, the infectious agents that cause them continue to circulate in some parts of the world. In a highly inter-connected world, these agents can cross geographical borders and infect anyone who is not protected. In western Europe, for example, measles outbreaks have occurred in unvaccinated populations in Austria, Belgium, Denmark, France, Germany, Italy, Spain, Switzerland and the United Kingdom since 2005. So two key reasons to get vaccinated are to protect ourselves and to protect those around us. Successful vaccination programmes, like successful societies, depend on the cooperation of every individual to ensure the good of all. We should not rely on people around us to stop the spread of disease; we, too, must do what we can.

Myth 5: Vaccine-preventable childhood illnesses are just an unfortunate fact of life. FALSE

Fact 5: Vaccine preventable diseases do not have to be ‘facts of life’. Illnesses such as measles, mumps and rubella are serious and can lead to severe complications in both children and adults, including pneumonia, encephalitis, blindness, diarrhoea, ear infections, congenital rubella syndrome (if a woman becomes infected with rubella in early pregnancy), and death. All these diseases and suffering can be prevented with vaccines. Failure to vaccinate against these diseases leaves children unnecessarily vulnerable.

Myth 6: Giving a child more than one vaccine at a time can increase the risk of harmful side-effects, which can overload the child’s immune system. FALSE

Fact 6: Scientific evidence shows that giving several vaccines at the same time has no adverse effect on a child’s immune system. Children are exposed to several hundred foreign substances that trigger an immune response every day. The simple act of eating food introduces new antigens into the body, and numerous bacteria live in the mouth and nose. A child is exposed to far more antigens from a common cold or sore throat than they are from vaccines. Key advantages of having several vaccines at once is fewer clinic visits, which saves time and money, and children are more likely to complete the recommended vaccinations on schedule. Also, when it is possible to have a combined vaccination, e.g. for measles, mumps and rubella, that means fewer injections.

Myth 7: Influenza is just a nuisance, and the vaccine isn’t very effective. FALSE

Fact 7: Influenza is much more than a nuisance. It is a serious disease that kills 300 000-500 000 people worldwide every year. Pregnant women, small children, elderly people with poor health and anyone with a chronic condition, like asthma or heart disease, are at higher risk for severe infection and death. Vaccinating pregnant women has the added benefit of protecting their newborns (there is currently no vaccine for babies under six months). Vaccination offers immunity to the three most prevalent strains circulating in any given season. It is the best way to reduce your chances of severe flu and of spreading it to others. Avoiding the flu means avoiding extra medical care costs and lost income from missing days of work or school.

Myth 8: It is better to be immunized through disease than through vaccines. FALSE

Fact 8: Vaccines interact with the immune system to produce an immune response similar to that produced by the natural infection, but they do not cause the disease or put the immunized person at risk of its potential complications. In contrast, the price paid for getting immunity through natural infection might be mental retardation from Haemophilus influenzae type b (Hib), birth defects from rubella, liver cancer from hepatitis B virus, or death from measles.

Myth 9: Vaccines contain mercury which is dangerous. FALSE

Fact 9: Thiomersal is an organic, mercury-containing compound added to some vaccines as a preservative. It is the most widely-used preservative for vaccines that are provided in multi-dose vials. There is no evidence to suggest that the amount of thiomersal used in vaccines poses a health risk.

Myth 10: Vaccines cause autism FALSE

Fact 10: The 1998 study which raised concerns about a possible link between measles-mumps-rubella (MMR) vaccine and autism was later found to be seriously flawed, and the paper has been retracted by the journal that published it. Unfortunately, its publication set off a panic that led to dropping immunization rates, and subsequent outbreaks of these diseases. There is no evidence of a link between MMR vaccine and autism or autistic disorders.

The steps listed here are legitimate and proven.  Also legitimate and proven is the fact that organ and tissue transplants save lives.  A new heart saved mine.  If you  do nothing else help increase the supply of organs by being an advocate.  Talk to family and friends about organ donation.  The process is simple and fast…it only takes minutes.  You can do it by adding “Organ Donor” to your drivers license or by going to www.donatelife.net.  Sign up and then tell your family.  That’s all there is to it.  One organ/tissue donor can save or positively affect up to 60 lives.

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.

Kids Should Get Organs and So Should Everyone Else


girl needs transplant 3girl needs transplant 2Transplant experts agree to special consideration for kids

The board overseeing organ transplants in the U.S. voted on Monday to allow special consideration for children needing lung transplants after the families of two dying children filed suit. http://vitals.nbcnews.com/_news/2013/06/10/18888114-transplant-experts-agree-to-special-consideration-for-kids?lite

The real story behind this sensational headline is that we have a severe shortage of transplantable organs that results in the deaths of 20 Americans of all ages every single day of the year.  Somehow, though, the big picture, the view from 50,000 feet gets lost in the clamor to save the lives of helpless, dying children.  We could save their lives and a lot of others if more Americans became organ donors — but let’s get back to the headline story and then discuss the bigger picture.

While today’s story appears to be good news it could also signal that people with the ability and resources to generate publicity favorable to their issue can cause decision making bodies to change policy.

I am and have always been of the opinion that younger patients should always be favored when organs become available but nothing is that simple.  There are a number of factors that go into the decision to transplant an organ and the age of the proposed recipient is but one of them.  Others include the size and condition of the organ, blood type, tissue match and the distance from the donor (some organs cannot survive outside the body long enough to travel great distances.  A heart in San Francisco likely cannot be sent to a patient in New York and maybe not even as close as Omaha).

I understand and sympathize with the public outrage over children who are dying because they can’t get organs to keep them alive.  I understand and sympathize with parents who will go to nearly extreme to save their children’s lives.  I, too, would seek relief from the courts.  These parents are doing what parents ought to do.  What I don’t understand is why the politicians and the media place so much emphasis on a short term fix for a few and ignore the long term solution for the many — which is to increase organ donation.

The problem is that while most of us have good intentions, we just don’t follow through.  Polls continually indicate that over 90% of us think organ donation is a great idea but available data suggest that only about 40% of eligible organ donors actually sign up.

The decision noted in the posted story could represent a double edged sword.  The experts who are members of governing bodies should rely on their expertise, experience and science to make decisions and not be swayed by political or public pressure.  Sometimes politicians and public opinion are wrong and when that’s the case the experts have to stand up to the pressure.

I would readily give up my spot on the transplant list if it meant a child could have an organ instead of me but the choice is rarely that simple.  I have a feeling that this move by “Transplant Experts” is window dressing because reality suggests that if organs don’t match, if they are too large, or if they don’t meet other criteria children will still be left waiting.

I don’t know much about most things but I do know a little about organ transplants being as I got a new heart in 2007. It took me 12 years to get on the national transplant list but only 13 days to get a new heart…I got lucky.

 In order to be listed for a transplant you have to be at an “end stage” in your disease.  That means physicians have to certify that you will die without a transplant.  Everyone on the list is dying and there are about 120,000 Americans who qualify but only about 28,000 transplants are done each year.  You do the math. Thousands die each year because of a lack of transplantable organs.

So, my friends with good intentions of becoming organ donors please know this.  Good intentions won’t save a single life.  If you are one of the 90% who believe that organ donation is a good idea but also belong to the 60% who haven’t signed up, do it now.  Just go to www.donatelife.net and follow the instructions.  It only takes a minute or two.  Then, then tell your family of your intentions.

The question I hear most often is, “If so many believe in donation, why aren’t they donors?”  I think the answer is quite simple and two-fold.  1) People don’t like to think about dying and 2) They don’t think they will die anytime soon so, “What’s the rush?”

The regrettable fact is that death can strike unexpectedly and if you are not an organ donor your organs likely will be buried with you.  Each year thousands and thousands of perfectly healthy transplantable organs are buried because the deceased person just “didn’t get around to becoming a donor.”

I hope that everyone who reads this lives for a very long time…but just in case, why not register now?  One organ donor can save or positively affect the lives of up to 60 people.  An expression often used and very true is, “Don’t take your organs to heaven; heaven knows we need them here.”  Good advice.  Register today www.donatelife.net

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 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.

Foreigners are Getting American Organs…Should That Be Allowed?


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Caregiver — Critical to Transplant Survival


A note from Bob Aronson, founder and publisher of Bob’s Newheart

This blog is a re-print of a piece published by Gift of Life Family House in Philadelphia, Pennsylvania.  Gift of Life Family House describes itself as a “home away from home” for transplant patients and their families by providing temporary, affordable lodging and supportive services to those who travel to Philadelphia for transplant-related care. Gift of Life Family House is a 501(c)(3) non-profit charitable organization.

There are many similar organizations at Medical Centers all over the country.  Here in Jacksonville, Florida, Gabriel House of Care on the famed Mayo Clinic campus functions much like Gift of Life, but no matter where they are they need outside support with dollars if you have some to spare — and if not, donate packaged goods like paper towels, dish soap and Kleenex that are always in short supply.

In the entire transplant process the daily caregiver is second only in importance to the donor.   How important is the caregiver?  How important is your life?  Most medical centers consider the caregiver of such great importance that if the potential transplant recipient doesn’t have a competent, dependable and compassionate person to fill that role, then he or she may not qualify for a new organ.  Have I got your attention?

This post is of equal importance to both the patient and the caregiver.   The patient has to be sure he/she not only selects the right person but must ensure that the caregiver has a complete understanding of what the role entails.  The caregiver, not only has to understand the role they have accepted but must also make sure the patient understands their capabilities  and limitations.  Saying, “Yes,” to being a caregiver is making a commitment that is more than taking care of someone for a few days.  It could stretch out for years.

Being a caregiver for a transplant patient or recipient is no easy task.  It can be emotionally and physically draining and it can also be one of pride and even exuberance but caregivers ought to know what they are agreeing to when asked to take on the job.  This advice and information from Gift of Life Family House is invaluable.  You can learn more about this organization at http://www.giftoflifefamilyhouse.org/

Transplant Stages for Caregivers

From Diagnosis Until the Rest of our Lives…Organ transplant is a life-long battle. The battle may be very difficult when first diagnosed with a medical issue that requires a transplant but many people feel it becomes easier and is well worth it; however transplant does not end after surgery for the patient or the caregiver. When diagnosed with an illness that will ultimately require an organ transplant some patients and caregivers think that after surgery the battle is over. Having a positive outlook is good but it is also helpful to be prepared for the tough times ahead that can come with a transplant. Caregiver Lifeline will chronicle the stages of transplant and some of the feelings and issues transplant caregivers experience when the patient is initially diagnosed and told they need a transplant; what it is like to wait for a transplant; the actual transplant surgery; what it is like post-surgery up until one year; and lastly, what it may be like post-transplant one year after and on. Some personal accounts of actual transplant caregivers who have been through the stages will also be described in this section.

Diagnosis

Diagnosis of a medical issue that requires a life-saving transplant can produce many different emotions in caregivers and family members. Those emotions can vary from one person to the next and are many times natural feelings that occur when dealing with a difficult medical diagnosis. Regardless of the organ, age or relationship you have with the patient, knowing that your loved one could die without a transplant can be very overwhelming, scary, upsetting and even angering.

At the moment of diagnosis some transplant caregivers and family members have admitted that they were very scared, but quite often due to lack of information and education about what their loved one was going through and what to expect in the future. Once they received that information their feelings of being scared or upset decreased because they knew what to expect. One brother of a kidney recipient admitted feeling very scared when he and his family initially found out about his brother’s kidney disease. He then described feeling more confident once he learned more about his brother’s condition and even better when he found out he could donate his own kidney to his brother, which he eventually did. The education this family received helped them prepare for the future and cope better with their situation. Not all individuals and families are alike. Other families and patients have admitted that too much information is a bad thing for them and they become more anxious or scared when they are given too much information all at once. It is helpful to know what type of person you are: do you like all of the information “no holds barred” or a little information at a time so you have time to process it at your own pace? Letting the transplant team know how you and your family would like to be treated can be very helpful so they can try to treat you and the patient accordingly.

When the diagnosis of an illness that requires a transplant happens suddenly, families and caregivers can be overwhelmed and may not retain information given or may forget to ask important questions about the transplant process. Some questions that may be helpful to ask the medical team are:

  1. Why does the patient need a transplant?
  2. Who will the patient receive a transplant from?
  3. How long will the patient need to wait for a transplant?
  4. What other treatments options are available?
  5. What treatment will the patient need to receive while they wait for their transplant? And how will that treatment affect their life (will they need to stop working, or will they need to be hospitalized?)
  6. Will the transplant prolong their life?
  7. What will be required after they receive a transplant? More hospitalization? Medication?
  8. How much will everything cost? And what will happen if we can’t afford the cost?

It is helpful to keep these questions and answers written in a journal to have available to look on when needed.

One mother describes finding out during her pregnancy that her son had significant kidney issues while in her uterus and he may not survive. She described being very shocked after already having given birth almost two years previous to a healthy son. She also described feeling like she was in a “nightmare waiting to wake up.” She states she never woke up and had to come to the realization that their family was in for a tough ride, if her son survived at all. Fortunately her son did survive and he was eventually able to receive a kidney transplant.

Many people who require a transplant have some knowledge beforehand that a transplant may be necessary. For instance, one transplant caregiver of her son (who required a heart transplant) was somewhat prepared for the day they were told he would need a new heart. Her son had medical issues for many years and a transplant was always a distinct possibility. During the time previous to needing a transplant this mother had a chance to educate herself on the process so the initial diagnosis was not a huge shock or completely overwhelming. This mother was still scared due to the risk of surgery and the risk the new heart would not work, but she also had a chance to become prepared and ask for support from her family and friends.

It may be difficult to prepare for a diagnosis that you had no previous knowledge of or any reason to prepare for, which is why it is ok to call your transplant team at any time if you have a concern or question. You could also make an appointment after you compile all your questions together. It seems scary to go home from the hospital or the doctors not having all the information you would like, so you can always perform the research yourself through reputable internet sites like www.Donors1.org or www.UNOS.org. The next step in the transplant process may also allow for some extra time to prepare for the future.

The “Wait”

Between the time when a patient, caregiver and family receive the news of needing a transplant and when they officially have surgery and receive their new organ, there is a waiting process. The wait while the patient is actually on the UNOS wait list can be short or very long, though there may be many emotional and physical issues experienced by the patient and family regardless of the duration of their wait. Quite a few things can determine how quickly a person receives a transplant and those standards differ from one organ to the next. For instance, a kidney transplant could happen rather quickly if a patient has a family or friend who is willing to be their living donor. A willing person (not bribed or forced) must be tested to see if they are a match for the patient. If they are a match, surgery can be scheduled and the transfer of kidney from the living donor to the patient can happen. If a person has no willing, matching, living person to donate to them, then they are placed on a waiting list through UNOS and must wait for a kidney from a deceased donor.

Some hospitals also do living donor liver transplants, where a willing person can donate part of their liver. The living donor must also match the recipient, though the guidelines are different than are for a living kidney donor transplant. Heart, lung and pancreas are organs that must be taken from a deceased donor, which unfortunately may make the wait longer. For more information on the specifics of different organs and wait times please visit the UNOS Website.

Because the wait time is so unknown, many caregivers and patients feel out of control and powerless. One mother described how helpless she felt and that there was nothing she could do to help her son while he was waiting for a transplant, which caused her much stress. Many caregivers and patients experience emotional “ups and downs” while waiting for a transplant because the future is unknown. It is not uncommon to feel like you are living one day to the next hoping for the call from the transplant center about a possible organ for your loved one. A transplant social worker suggested that one way to feel more in control during the wait time is to stay in contact with the transplant team, call when you have questions, keep appointments as scheduled and help the patient take responsibility for their health care. By staying in contact with the transplant team, you and the patient can feel more connected to the transplant process which may alleviate some of the uncertainties of the wait process.

During the wait process caregivers experience many different emotions. One of the most common emotions described by caregivers is fear that their family or friend will not live long enough to get their organ. Others experience emotions such as anger at the patient, medical team, or even themselves. Some caregivers may feel anxiety regarding their own life regarding their financial situation and how they will afford to care for their family member or friend and whether they will have to stop working or stop doing things they enjoy. Another emotion may be denial. Caregivers may think the issue is not as serious as it truly may be. Most emotions felt by caregivers are natural and quite universal. Support groups can be very helpful because it allows transplant caregivers to hear some of the universal concerns and issues of other transplant patients and caregivers. It is also common for a caregiver to feel as though they are the only person on earth going through the issues related to being a transplant caregiver, which is another reason a support group can be helpful. It can be beneficial to be able to talk to others who have dealt with or are dealing with the same issues.

Another emotion that many patients and families feel is grief; some even call it “survivor’s guilt.” One mother described feeling quite a bit of grief that she was waiting for someone else to die in order for her son to receive a kidney to live. She states, “That was the hardest part for me, knowing that our overwhelming joy would be another family’s overwhelming grief.” A different mother to a 14 year-old heart recipient was so excited when her son received his heart and had a second chance at life, but her family struggled for some time as well realizing that another person passed away in order for her son to receive a heart. She stated, “We are so joyful that our son will have a second chance but it is tempered because there is a huge loss associated with it for someone else.” This type of feeling is extremely natural for many transplant caregivers and organ recipients. In the exception of a living kidney or liver donor, in order for one person to receive an organ transplant, another person will pass away and their family has the option to donate their organs. However it is a wonderful gift for a person to donate their organs after they pass away, because it is giving another person a second chance at life. To understand the donation process better, visit www.Unos.org or www.Donors1.org.

The wait for an organ can vary so it may be helpful to address your feelings as they occur and get help if you are in need. Finding out that others have gone through similar issues can be helpful through support groups. Talking to the transplant social worker can also be beneficial because they can connect you to other options such as counseling or other supportive services. Support groups and counseling can be helpful to the patient as well as the caregiver because the wait process can be difficult for both parties. Don’t forget to include other siblings or family of the patient because many times they may also have similar feelings requiring additional support.

During the waiting period, caregivers and family may have time to prepare for the future. Finances usually play a large role in any medical issue that requires a lot of medication or frequent appointments or hospitalization. Because transplants are not over after surgery, planning and preparing for the financial cost is important. There are many resources to assist with transplant costs if a person has limited means. For instance, most prescription companies provide assistance for drug costs. Many large hospitals also may have financial assistance programs for patients. If there is ever a financial concern, talk to the transplant social worker immediately and let them help through the process. Many times the caregiver is left to deal with those issues, especially if they become the financial provider because the patient cannot work. As the caregiver your employment may become affected, which could also affect your health insurance. It may be helpful to prepare your employer if there is going to be any changes with your ability to work and how that could affect your health insurance.

Also see Financial Burden on Caregivers for more information.

In addition to planning financially or preparing for your own work issues, it may be helpful to begin to talk with the patient about their future. The patient’s future can include many different things, so it is important to identify what is important to them. For instance, has the patient thought about their job or hobbies and how that will affect their financial state or health insurance? It may be scary to think about, but what if the patient becomes too sick and no longer can make decisions? Who will be the medical power of attorney or a financial power of attorney? Does the patient have an advance directive, and if not, do you know their wishes? Your relationship with the patient may determine your involvement in their care if they cannot make their own decisions, however it is still important to encourage the patient to think about their own future.

Transplant Surgery

Finally, your family member is getting their organ and a second chance at life! Transplant surgery can be very exciting because the wait is over and life can restart. You may be able to go back to work or begin doing what you used to enjoy; the patient can be normal again, and live a long, happy, healthy life. All of this can be true but the surgery and recovery are very important and sometimes the most difficult part of the transplant process.

During the transplant surgery stage the patient can be hospitalized for anywhere between 5 days and 14 days, without complications. If there is a complication during surgery the patient may then be required to stay in the hospital for longer than expected. At this time you may physically not want to leave the patient’s side but you may also have to take care of the rest of your family or continue to work. It can be very stressful for a caregiver to balance their life with that of the patient’s transplant recovery. It is important for a caregiver to remember that taking personal time is essential, even during this time, because chronic stress can build up and potentially cause medical and emotional issues which could limit the caregiver’s ability to be a good caregiver. Leaving the hospital for an hour a day, or taking an hour a day to do something enjoyable could make a positive difference while dealing with the stress involved with the hospitalization. Don’t forget there are many transplant team members available if you have any concerns.

Post Surgery – 1 year

Many transplant social workers have said that the first year after a transplant can be very difficult for patients and families. Transplant does not end after surgery, and many times people feel that after surgery and a short recovery everything will be fine and life will resume with little obstacles. Sometimes it is not always possible to jump back into your previous routine and lifestyle so quickly. For some people, one year after transplant can be the most difficult. Trying to get your life back while the patient is continually being monitored by doctors for rejection and getting used to a new life with a new organ can be tough. Each organ is different and recovery times and needs are different for each patient, so it is important to always talk to the transplant team about concerns or questions and to better understand what it could be like for the patient.

One family stated they were in and out of the hospital more in the one year post-transplant than any other time because of so many rejection episodes. Every patient and transplant is different; some patients experience many rejection episodes and need to go back and forth to the hospital, which is not uncommon, while other patients may never experience a rejection episode. If the patient feels they are having symptoms of rejection, it is important to follow the discharge directions from the transplant team and contact them as soon as possible.

Because recovery times can differ from one transplant to the next it is not easy to identify a set recovery time. For lung transplants, a patient may be required to attend up to three appointments per week post-transplant for up to three months, whereas for a kidney transplant only two appointments for 6 weeks may be required. If a person does not reside in the transplant hospital area it can make life even more difficult post-transplant. Similarly, if the caregiver needs to return to their life or work they also may have a tough time arranging the patient’s transportation to and from the hospital for their appointments. It may seem stressful for a transplant caregiver one year post-transplant because there may be alot of pressure to keep the patient healthy with their new organ. Some things that are important to consider after transplant is monitoring for rejection, getting used to taking new medications, nutrition, getting back to doing things you and the patient love and keeping a positive outlook. Talk to your transplant team to find out the best way to monitor the patient post-transplant, as every patient is different.

Depression and other mental health disorders have been known to be prevalent up to one year post transplant, and emotional health could affect compliance which can in turn affect the survival of the transplant. Caregivers may also experience symptoms of depression due to lifestyle changes and stress that transplant can cause. Caregiver and family support has been found to be very effective in assisting with emotional and mental issues post-transplant so the caregiver should always plan for continued contact with the medical team as needed.

As a caregiver it can be an emotional rollercoaster trying to monitor the patient’s health after a transplant while living your own life and caring for other family members or working. The section about compliance may provide some assistance when it comes to getting the patient to care for their organ and prevent rejection with good compliance. The transplant team is there to help with concerns and issues as well. Please see Emotional Health for Transplant Caregivers for more information.

Post Transplant – Until the Rest of our Lives

The patient will always have their transplant doctors and team to contact with questions or concerns at any point down the line. Transplant is life-long and although stable patients’ and families’ contact with the transplant team may lessen, the transplant team should always be there for the patient and family as long as needed.

At this point in the transplant the patient may be stable enough to have very little contact with the transplant team; therefore it’s time to get back to life if you and the patient have not done so already. It is recommended to go back to enjoying things you and your loved ones once enjoyed. One important reason a person would want to receive a transplant would be to extend their life so they can continue to live their life by doing what they love.

Many caregivers have a difficult time letting their caregiver role go because it has been an identity for quite some time. If there is no need for you to be a caregiver any longer then it is important to move on to your next role and place the caregiver role on the back burner. If you enjoyed being a mom, a worker or soccer coach for example, then take on those roles again and make them an important priority. The same can be said for the patient who may no longer be the patient, and also must place that role to the side. This stage can be difficult for both parties because many people have trouble returning to work, or spending time with friends without having a constant worry of the transplant patient.

How can a caregiver stop being a caregiver? It may be helpful to first identify what you enjoy in life. Do you love being a mother? Did/do you love your job? Did you previously spend every Thursday with your friends playing golf or going to the movies? Then try to do those enjoyable things as often as possible without thinking about transplant. Encourage the patient to do this as well.

Though you are being encouraged to let the caregiver role go, it does not mean you and the patient no longer have transplant responsibilities. Transplant is a lifelong process so you and the patient may need to take on the patient/caregiver role again at some point down the line. Additionally, there are some transplant pieces the patient cannot put on the back burner, such as good nutrition, exercise and medication compliance.

Another piece of life post-transplant is you and the patient continuing to live a healthy lifestyle. The patient will need to keep their new organ healthy, and as a caregiver you may play a large role in encouraging them. Without good health the organ could reject, placing the patient back where they were previously: needing a transplant. The patient’s transplant team, including their dietician, will be able to give good advice on good nutrition and exercise for the patient. Similarly, it is important for you to have good nutrition and exercise practices to keep yourself healthy as well. Good nutrition and exercise habits have even been shown to decrease depression. Please see the Physical Health for Transplant Caregivers and Emotional Health for Transplant Caregivers sections for more information and education for the caregiver.

Don’t forget to live your life to the fullest now that you and the patient have a second chance at life. The transplant is giving you and your family the opportunity to appreciate life and everything it has to offer.

-0-

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.

The Future Of Organ Transplants — No Waiting!


Since the National Organ Transplant Act (NOTA) went into effect in 1984 we have had a shortage of transplantable organs and there doesn’t seem to be any way we will ever not have a shortage as long as we depend on altruistic donation of “natural” organs.
.
There are two ways to end the transplantable organ shortage.  One is to prevent organ damage by living healthier lives and the other is to find the means to develop and provide artificial organs which can be mechanical, biological or a combination of the two.
.
Popular Science  magazine has been around as long as I can remember and has always fascinated me with its reports on astonishing achievements in science and technology.  The information below comes from one of their issues.  Read these stories with the expectation that a future where there is no waiting for a transplant is possible.  If these reports are accurate the days of organ shortages could be numbered and we will be able to put a stop to the ever increasing number of people who die waiting for an organ transplant. .
.

Video: The Doctors Who Made the No-Pulse Heart

              By Jeremiah Zagar                  Posted 02.29.2012 at 2:04 pm                  9
       

Heart Stop Beating is a three-minute documentary film about the no-pulse, continuous-flow artificial heart, which Dan Baum writes about in our Future of Medicine issue. It tells the story of Billy Cohn & Bud Frazier, two visionary doctors from the Texas Heart Institute, who in March of 2011 successfully replaced a dying man’s heart with the device they developed, proving that life was possible without a pulse or a heart beat.

Feature

No Pulse: How Doctors Reinvented The Human Heart

      This 10,000-rpm, no-pulse artificial heart doesn’t resemble an organic heart–and might be all the better for it
              By Dan Baum                  Posted 02.29.2012 at 12:13 pm                  37 Comments
       

Meeko the calf stood nuzzling a pile of hay. He didn’t seem to have much appetite, and he looked a little bored. Every now and then, he glanced up, as though wondering why so many people with clipboards were standing around watching him.

Fourteen hours earlier, I’d watched doctors lift Meeko’s heart from his body and place it, still beating, in a plastic dish. He looked no worse for the experience, whisking away a fly with his tail as he nibbled, demonstrably alive—though above his head, a monitor showed a flatlined pulse. I held a stethoscope to his warm, fragrant flank and heard, instead of the deep lub-dub of a heartbeat, what sounded like a dentist’s drill or the underwater whine of an outboard motor. Something was keeping Meeko alive, but it was nothing like a heart.

Japanese Researchers Create a Pituitary Gland From Scratch in the Lab

              By Clay Dillow                  Posted 11.10.2011 at 11:08 am                  10 Comments
       

The thing about growing working organs in the lab is that the whole enterprise is completely mind-blowing. Yet we just keep doing it, and so we keep blowing minds. The latest: a team of researchers at Japan’s RIKEN Center–the same group who earlier this year engineered a mouse retina that is the most complex tissue ever engineered–have now derived a working pituitary gland from mouse stem cells.

Feature

State of the Bionic Art: The Best Replacements for My Flimsy Human Parts

      In the event of some horrible accident, which bionic parts would I want replacing my own?
              By Dan Nosowitz                  Posted 08.23.2011 at 2:00 pm                  5 Comments
       

We cover biomedical science and engineering a lot, and sometimes I get to wondering: if I was rebuilding my own flimsy, flesh-based body–presumably because I’d had some ghastly dismembering, eviscerating accident–and replacing my limbs, joints, senses, and organs with the most futuristic, top-of-the-line bionics, what would I get? Would I want an artificial lower leg that sprinters use in Olympic-level races, or a motorized leg that can climb a slope as well as a natural leg? I gathered a list of 15 bionic body parts that I’d want to wear, or have installed.

Click to launch a tour of the body parts I’d want in the event of an accident.

A New Artificial Lung Can Breathe Regular Air Rather Than Purified Oxygen

              By Clay Dillow                  Posted 07.26.2011 at 5:06 pm                  10 Comments
       

Researchers in Cleveland have built an artificial lung that is so efficient it can breathe regular air rather than the pure oxygen required by current artificial lungs. The technology makes possible the idea of a man-made lung that is far more portable–and possibly implantable–for the nearly 200 million people suffering from some degree of lung disease.

Lab Builds a Fully Functioning Artificial Small Intestine

              By Rebecca Boyle                  Posted 07.06.2011 at 11:56 am                  5 Comments
       

California researchers have created a tissue-engineered small-scale small intestine in mice, a breakthrough for regenerative medicine and a step toward growing new intestines for humans. The process re-creates all the layers of cells that make up a functioning intestine.

Diabetes Researchers Report New Steps Towards the First Artificial Pancreas

              By Rebecca Boyle                  Posted 06.27.2011 at 1:43 pm                  2 Comments
       

Private companies and hospital researchers are increasingly making strides toward developing an artificial pancreas, supplanting insulin injections and pinpricks for patients with diabetes. Such a system would mimic the functions of a healthy pancreas, delivering insulin and monitoring blood sugar according to a computer’s careful calculations.

This Lung-On-A-Chip Is The First Lab-Ready Mini-Organ to Be Used in Drug Research

              By Victor Zapana                  Posted 10.08.2010 at 11:15 am                  5 Comments
       

This ersatz lung, no bigger than a multivitamin, could represent a new pharmaceutical testing method. On it, researchers have created an artificial alveolus, one of the sacs in the lungs where oxygen crosses a membrane to enter the body’s blood vessels. A polymer sheet that stands in for the membrane is in the blue strip. On one side of the sheet, blood-vessel cells mimic a capillary wall; on the other, lung-cancer cells mimic lung epithelial cells.

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.

Human Organs From Pigs — But You’d Have to Kill One to Get One.


What if we could end the organ shortage tomorrow and everyone on the list could get a transplant within a few weeks?  Would you be willing to endorse this new source of organs?  If the source were a pig would you be willing to kill it to save your own life?

Xenotransplantation is the process of transplanting organs from animals into humans and historically that hasn’t worked too well. The human immune system immediately and violently attacks organs from animals and even our most powerful immunosuppressant drugs are ineffective but scientists are working on the problem because if we could use animal organs (ethical questions aside for now) we could end the organ shortage almost immediately.

The answer may lie in raising transgenic animals – animals that carry genes from other species or in the case of humans, animals that have been genetically modified so that their organs are transplantable into human beings.

According to www.actionbioscience.org  Transgenic animals are not a pipe dream either, they are already being produced.  The majority has been mice but scientists have also produced rabbits, pigs, sheep, and cattle. The primary question is not if we can raise pigs to produce organs for humans but when that is likely to happen and it’s possible it could happen relatively soon.  In Korea scientists have already cloned a genetically altered pig with hopes of using its organs in humans but that has, to my knowledge, not yet been done successfully.

There are distinct medical applications to the process of transgenics and providing a ready supply of transplantable organs is one of them.  Presently there is a single protein that can cause rejection but researchers think they can eliminate that problem in the not too distant future by replacing it with a human protein.  It is also possible that animals could be raised to be disease resistant which would benefit both the animal and humans to which some animal diseases can cross.

Pigs are currently thought to be the best candidates for organ donation. The risk of cross-species disease transmission is decreased because of their increased phylogenetic distance from humans. They are readily available, their organs are anatomically comparable in size, and new infectious agents are less likely since they have been in close contact with humans through domestication for many generations.

Aside from growing organs for transplantation, milk producing animals are desirable, too, because they can be used to producenutritional supplements and pharmaceuticals.   Products such as insulin, growth hormone, and blood anti-clotting factors may soon be or have already been obtained from the milk of transgenic cows, sheep, or goats. Research is also underway to manufacture milk through transgenesis for treatment of debilitating diseases such as phenylketonuria (PKU), hereditary emphysema, and cystic fibrosis.

So, yes, there are great possibilities with transgenic animals but there are also ethical concerns that must be addressed.  For example:

  • Should there be universal protocols for transgenesis?
  • Should such protocols demand that only the most promising research be permitted?
  • Is human welfare the only consideration? What about the welfare of other life forms?
  • Should scientists focus on in vitro (cultured in a lab) transgenic methods rather than, or before, using live animals to alleviate animal suffering?
  • Will transgenic animals radically change the direction of evolution, which may result in drastic consequences for nature and humans alike?
  • Should patents be allowed on transgenic animals, which may hamper the free exchange of scientific research?

Animals like pigs offer hope for the thousands of people languishing on the national transplant list.  Unfortunately these things take time and while scientists and then politicians and bureaucrats investigate the possibilities thousands will die waiting for organs.  The altruistic system that we have in place in America just isn’t enough.  We must do more to save the lives of those who need organs.  Hope lies in xenotransplantation, regenerative medicine, therapeutic cloning and artificial organ development.  We must keep that hope alive by support these efforts.

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.

You Could Die Today! Will You Bury Your Organs Or Donate Them?


What if tomorrow or even today was your last day to be alive?  It’s possible.  No one knows when their time will come.  We start dying upon birth and could die young from a variety of medical or accidental causes. That’s why it is so important to become an organ donor now, right now.  Just go to www.donatelife.net and do it. 

There are three reasons you should become an organ donor right now:

  1. You could die today or tomorrow and if you are not a donor your organs could be buried with you.  It happens 20,000 times a year in the U.S. 
  2. You could find out that you or a loved one needs a transplant
  3. You are a compassionate human being who wants to save lives and you understand the urgency.

My blogs are about living, about saving lives and about how the living can help do that but sometimes a writer has to provide some shock value in order to get people’s attention.  So here’s the shock.  You should become an organ donor soon because you could die soon, very soon. Stand by…there’s more shock to come.

You’ve all heard the numbers 114,000 people on the organ transplant waiting list with only 28,000 transplants done each year. Estimates indicate about 20 people die every day while waiting for organs.  Becoming an organ donor is an urgent issue but for most potential donors it is only urgent for the would-be recipient but consider this… you or a loved one could be the next patient in line waiting for an organ transplant. 

While 9 out of 10 Americans support organ donation, only 38% of US driver’s license or ID card holders are registered as organ donors, according to the 2009 Organ Donor Report Card. Overall, only 1 in 3.75 people in the US are registered organ donors. And in 2008, for the first time in at least 20 years, the number of both living and deceased donors declined over the previous year, according to the United Network for Organ Sharing (UNOS) Organ Procurement and Transplantation Network (OPTN).

None of us expect to die any time soon so we approach organ donation with a, “What’s the rush” attitude.  “They can’t take my organs until I die and I’m going to be around for a while so I’ll become a donor when I get around to it.”  But…what if you die before you get around to it?  Here are some startling odds.

All figures below are for U.S. residents.as of 2005, the latest year this data was available.

Your chance of dying of any of the following                                                   Lifetime Odds

Heart Disease                                                                                                        1-in-5

Cancer                                                                                                                    1-in-7

Stroke                                                                                                                     1-in-23

Accidental Injury                                                                                                   1-in-36

Motor Vehicle Accident*                                                                                      1-in-100

Intentional Self-harm (suicide)                                                                            1-in-121

Falling Down                                                                                                         1-in-246

Assault by Firearm                                                                                               1-in-325

Fire or Smoke                                                                                                        1-in-1,116

Natural Forces (heat, cold, storms, quakes, etc.)                                             1-in-3,357

Electrocution*                                                                                                       1-in-5,000

Drowning                                                                                                               1-in-8,942

Air Travel Accident*                                                                                           1-in-20,000

 SOURCES: National Center for Health Statistics, CDC; American Cancer Society; National Safety Council; International Federation of Red Cross and Red Crescent Societies; World Health Organization; USGS; Clark Chapman, SwRI; David Morrison, NASA; Michael Paine, Planetary Society Australian Volunteers

 Heart disease, Cancer, Stroke and Accidents claim the most people every year.  If you really believe in organ donation becoming a donor right now is the only logical thing to do.                                                                                                              

I hope everyone who reads this blog lives for a very, very long time but I also hope you recognize that there is no time to spare in becoming an organ donor.  My donor was only 30 years old when he died.  I’m sure he expected to live a lot longer than that but fate is unpredictable so why not arrange now to save some lives.  If you wait you could not only lose your own life but cause others to die because your organs were buried with You.                                                                                               

It is so easy to become a donor.  You can do it by going to www.donatelife.net , on Facebook or you can get free organ donation Apps for your cell phone, pads and computers too.  One is http://www.appbrain.com/app/donor-register/com.sam.donorregister  I understand that Blackberry and I-phone have similar apps.

Please understand the urgency. Please go to your computer right now and sign up and then be sure to tell your family, your physician and your faith leader if you have one and…when you renew your driver’s license make sure you check the organ donor designation.

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.

Yes, Brain Death Means You Are Really Dead!


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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Journalistic Terrorism


I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

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

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

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

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

 

Death by Journalism


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

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

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

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

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

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

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

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

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

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

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

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

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

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida

Not Enough Transplantable Organs, Thousands Die…Options for Change


There will come a time when organ/tissue/blood donors are no longer needed.  Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation.  But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.

Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved.  Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA  also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN). 

That was 28 years ago.  Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.

As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working.  Each year about 6,000 people die while waiting for a transplant.  Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant. 

While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system.  From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die?  How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?”  Surely something can be designed that will provide the needed number of organs and still be an ethical practice.

I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die.  Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.

Twenty eight years of letting people die.  About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change.  Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.   

As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical.  So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”

My research indicates that while there are not a plentitude of options to consider there are some and they include:

 

  1. 1.    Mandatory donation (anyone who dies is automatically a donor, no exceptions)
  2. 2.    The LifeSharers approach, (you can only receive an organ if you are a donor)
  3. 3.    Presumed consent (You are automatically a donor unless you opt out)
  4. 4.    Some sort of compensation plan for donors and/or their families.
  5. 5.    A combination of presumed consent and a payment system

 Let us tackle mandatory donation first.  On its surface it sounds harsh and like a product out of an HG wells book.  It is harsh and probably unacceptable because of its dictatorial overtones.  Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.

 Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:  

 ”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”   

The two researchers go on to say,

“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”  

While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.

The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be.  In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member.  To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance. 

Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first.  Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person.  Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community.  Additionally LifeSharers growth has been slow indicating limited acceptance by the public.  You can learn more about LifeSharers at http://www.lifesharers.org/

The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite.  It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.”  You can learn more about presumed consent at http://tinyurl.com/7mcjoez.

In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference.  The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered. 

The most politically sensitive of all the issues is the outright sale of organs.   At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market.  It is not realistic to think that any U.S. regulatory or government agency would even consider the idea.  Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.

Iran legalized living non-related donation (LNRD) of kidneys in 1988.  The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance.  The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them.  Here’s an interesting twist, though.  It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment.  Within a year of being implemented the number of transplants in Iran almost doubled.

 They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs.  Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs.  The Iran concept is certainly an option but polls continually indicate it is not a very popular one.

 There are some variations on the “Payment” theme that might be attractive to the American people.   We could consider a system that “compensates” rather than pays donors or their families.  For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage.  The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications.  A very good case could be made for compensation for these expenses.

There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.” 

It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .

The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel. 

The point of this blog is to just get people thinking.  The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors.  That we must change if we are to stop the dying, is a given.  Determining what that change should be is what is so incredibly difficult. 

-0-

Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here.  When you have decided what you think is the best solution, you should contact your elected representative or U.S. Senator and let them know your feelings.  Change has to begin somewhere, why not with you?

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

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

Too Few Organ Donors — Inadvertent Terrorism


Each day 19 people die because there are not enough transplantable human organs to fill the need.  The United Network for Organ Sharing (UNOS) which coordinates all transplants in America maintains a list of people who need life-saving transplants.  As of today, January 2, 2012 the numbers are:

Waiting list candidates                                 112,702

Transplants January – Sept. 2011              21,354

Donors January – Sept. 2011                       10,558

Right now, as you read this a patient, maybe a child, is near death.  She needs a heart but there won’t be one. As the electronic monitors beep and chirp, the family is devastated, inconsolable in the frustration over the lack of organ donors and the imminent death of their loved one.  The best medical care in the world is at their fingertips but they are helpless without an organ donor.  The patients vital signs are dropping more rapidly now, the Doctors aren’t holding out much hope.

Right now as you read this, another patient not too far away has already been declared brain dead as the result of an auto accident.  He is surrounded by a grieving family.  It is not known if the patient is or wanted to be an organ donor.  The family is considering a request to donate his organs but the decision must be made soon and they don’t know what to do, their loved one never told them of his wishes.  Through tears and indescribable grief they discuss, they argue and then decline.  Both patients die.

Each year Americans bury or cremate more than 20,000 transplantable organs – 20.000.  Surveys continually indicate that over 90 percent of Americans approve of organ donation but in one of the greatest mysteries ever, only 46 percent actually make the commitment to do so.  This inaction, this procrastination is causing people to die, families to grieve and patients who are awaiting transplants to live their lives in absolute terror.  People who are not organ donors are not evil, they are not bad, they just don’t understand that their lack of action causes terror among patients as great as that caused by the real terrorists of the world.

Most people who aren’t donors, “Just haven’t gotten around to it.”  After all, there’s no rush for them.  Organs are recovered after a person dies and most potential donors are in pretty good health.  The problem is that the patients who need the organs are not in good health.  Everyone who is on that UNOS list mentioned earlier, is dying.  Without a transplant they will die.  Period. End of story.

Well, let’s make the donation process really simple, so simple you can do it from home, your office, on your I-pad or Kindle in your doctor’s waiting room anywhere.  You don’t even have to get up.  Just go to www.donatelife.net and follow the instructions then tell your family what you have done.  It only takes minutes.  Then make very sure they clearly understand that you want to be an organ donor.  “That means when I die I want the medical people to take as much of my tissue and as many of my organs as they need to help save or enhance the lives of others.”  Those are my distinct wishes please respect them should the time come.

That’s the first step to saving lives by helping to increase the number of donors.  The second step, just in case you like this cause and want to do more, is to spread the word to convince others to do the same.  “So,” you say, “How do I do that, how do I spread the word?”  Here are ten easy tips, I’m sure that if you think real hard you might be able to come up with ten more.

  1. 150 words is about a minute’s speaking time.  Write out about 150 words on why organ donation is important to the donor…the donor and then post it everywhere you can think of on the internet.
  2. Call your local Organ Procurement Organization (OPO) and volunteer to speak on behalf of donation.
  3. Buy the green “Donate life” wristband at www.donatelife.net and wear it every day.  If someone admires it give it to them and ask them to wear it.  What’s a few bucks to save  some lives?
  4. Ask your pastor to give a sermon on organ donation…offer to help gather the information for him/her.
  5. Write a letter to the editor…actually send it to every editor you can think of.
  6. When some radio talk show host least expects it…call about the importance of organ donation
  7. Offer to speak to a local service club about donation/transplantation issues (Kiwanis, Rotary, Lions etc).
  8. Add a short note about organ donation to the signature of every email you send “Did you know that one organ/tissue donor can save or positively affect up to 60 lives?”
  9. Talk to a public school class about donation/transplantation
  10. Start a blog…it’s really easy.  Just Google “free blog sites” and go for it.

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.” Just go to www.organti.org and click on the title.  This video was produced to py romote organ donation so it is free and no permission is needed for it’s use.  You’ll also find other useful information on this web site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative (OTI) The more members we get the greater our clout with decision makers and the more clout we have the more likely it  is that we’ll be able to increase not only organ donation but the many alternatives that science and technology people are working on.

Ending the Organ Shortage Through Regeneration


I’ve written about regenerating organs in the past and found that while many like the idea many others think the process would violate some religious principles so let’s put it in perspective.

First, it is important to define regeneration.  Your body already regenerates some organs on its own.  For example, have you ever cut yourself and then noticed that within a short time the cut disappears and there is no evidence of the cut on your skin.  That’s because skin, the largest organ in the human body, regenerates itself.  Another human organ with the same capability is the liver, which is why a person can donate a part of their liver to another person who needs a transplant.  Both the donor and the recipient’s liver parts can then re-grow into normal, healthy livers. 

Scientific or technological regeneration of organs is not possible now but could be in a few years.  Apparently there are several methods that could be used that would allow us to grow new organs if the old ones become diseased or damaged.  For example if a person suffers from a weakening of the heart muscle (cardiomyopathy) we might be able to replace the old heart with one grown from our own cells.  That means there would be no rejection because the body would not recognize it as a “foreign” object like donated hearts.  Subsequently there would be no need for the very expensive anti-rejection medication that transplant patients must take for the rest of their lives. 

At this moment there are over 110.000 people on the U.S. transplant list.  All of them will die unless they receive a life saving organ and those organs are only available from voluntary living or deceased donors.  Unfortunately only about 40-50 percent of Americans are donors and that means many of the people on the list will die waiting.  It does not appear that the U.S. will change the method of obtaining donors any time soon so we have two alternatives, regenerating organs or developing much more sophisticated mechanical organs.  Growing new organs may be preferable because they would be real and would not be rejected by the body but additionally such an achievement could mean the end of the organ shortage and that’s why there is so much excitement surrounding the issue.

The use of embryonic stem cells to re-grow organs is a method that seems to be the most controversial because some claim that an embryo is a human life and therefore we shouldn’t use them.  But there are other methods as well and we’d like to hear your thoughts about any of them. 

The world famous Mayo Clinic recently announced that regenerative medicine is a top priority for the organization and is moving ahead on some exciting research into using Pluripotent stem cells. “Huh?” You say, “What are they?”  According to Mayo, Pluripotent stem cells come from your own body and have the potential to produce almost any other cell in the body.   Mayo summarizes the process in four steps:

1. Take a few cells from a human.

2. Keep the patient stabilized long enough for more cells to be grown.

3. Re-engineer the cells to turn them into adult Pluripotent stem cells (the kind that can be triggered to change into any tissue, without the need for controversial embryonic stem cells).

4. Inject the cells into the damaged tissue of the person from whom they were taken. Or replace the patient’s damaged organ with a new, healthy one (grown from the person’s own cells). http://blog.targethealth.com/?p=11930  

According to the Exploring Stem Cells website (http://www.explorestemcells.co.uk/pluripotentstemcells.html) Pluripotent stem cells provide a chance to get a renewable source of healthy cells and tissues to treat a wide array of diseases such as heart disease and diabetes. Burn victims and those who suffer from autoimmune diseases such as Parkinson’s can all potentially benefit from the use of Pluripotent stem cells.

Pluripotent stem cells have a vast potential for the treatment of disease, namely because they give rise to the majority of cell types in the human body. These include muscle, blood, heart and nerve cells. Another potential use for Pluripotent stem cells involves the generation of cells and tissues for use in transplantation.

Pluripotent stem cells can evolve into specialized cells that ultimately can replace diseased cells and tissues. Drug research is another area that Pluripotent stem cells may benefit. Animals are a commonly used model to assess the safety and use of drugs. Instead of initially testing drugs on animals, they can be evaluated through testing on cells grown from Pluripotent stem cells. Those drugs that appear tolerated and safe can then progress to testing on animals and finally, humans.

There are several areas of research that offer organ regeneration possibilities like this one just announced this year.  http://www.hplusmagazine.com/articles/bio/print-your-own-designer-organs It would print yes print, new organs with ink jet technology.  It sounds a little complicated and perhaps strange but it does offer potential and hope for patients.

If you are really interested in the ethical issues surrounding regenerative medicine then I suggest you take the time to read Wake University’s Ethical Issues in Regenerative Medicine http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1380162

I hope you have found this post to be helpful, perhaps enlightening but no matter what we would like to get your thoughts on this most important issue.  Please 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 a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.

Visit and join my Facebook site, ORGAN Transplantation Initiative (OTI) at http://www.facebook.com/group.php?gid=152655364765710 the more members we get the greater our potential impact on decision makers who influence all organ transplant issues.  Also, check out my blog https://bobsnewheart.wordpress.com and my Facebook home page http://www.facebook.com/home.php.

%d bloggers like this: