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The Greatest Public Health Threat is Here Now — Antibiotic Resistant Diseases


By Bob Aronson

partners in antibiotic resistance

Antibiotics and drugs called antimicrobial agents have been used for the last 70 years to treat patients with infectious diseases who might genotherwise have died.  Unfortunately these “Miracle” drugs were used for such a long time and so indiscriminately that the organisms they were designed to kill have mutated and become more resistant to them. In some cases the drugs don’t work at all anymore.

Each year in the United States, at least 2 million people become infected with antibiotic resistant bacteria and at least 23,000 of them die as a result. While 23,000 is a significant number it does not even come close to being in the catastrophic category so there’s not much media attention given to the problem  – until now and this headline.

Is Antibiotic resistance: the greatest public health threat of our time?

Tsuperbugshis is not the stuff of science fiction.  It is real and it is supported by both the World Health Organization (WHO) and by the U.S. Centers For Disease Control in Atlanta, Georgia (CDC)

The WHO says we are in a “post-antibiotic era”, in which even the most minor bacterial infections could mean death, a statement made true because of antibiotic misuse, overprescribing and poor diagnoses.

A world without antimicrobials would be a world without modern medicine, so why is there not more urgency in addressing the global rise of drug resistance? The New Statesman brought leading health experts together to discuss the problem. http://www.newstatesman.com/sci-tech/2014/07/antibiotic-resistance-greatest-public-health-threat-our-time

Antibiotic-resistant infections can happen anywhere. The CDC says that most of them happen in the general community; however, most deaths related to antibiotic resistance happen in healthcare settings such as hospitals and nursing homes.  http://www.cdc.gov/drugresistance/threat-report-2013/index.html

 The Threat to You

Diseases that either are or are becoming antibiotic resistant http://www.cdc.gov/drugresistance/DiseasesConnectedAR.html

A growing number of disease-causing organisms or pathogens, are resistant to one or more antimicrobial drugs—including the bacteria that cause tuberculosis, the viruses that cause influenza, the parasites that cause malaria, and the fungi that cause yeast infections.  All are becoming resistant to the antimicrobial agents used for treatment.  Curious about other diseases that may not respond to your antibiotics?   Here’s a partial list from the CDC.  The full list can be seen by clicking on the above link.

Acinetobacter acinetobacteris a type of gram-negative bacteria that is a cause of pneumonia or bloodstream infections among critically ill patients. Many of these bacteria have become very resistant to antibiotics.

Anthrax

Anthrax is a serious disease caused by Bacillus anthracis, a bacterium that forms spores. Anthrax most commonly occurs in wild and domestic mammalian species, but it can also occur in humans when they are exposed to infected animals or to tissue from infected animals or when anthrax spores are used as a bioterrorist weapon. Some strains of B. anthracis may be naturally resistant to certain antibiotics and not others. In addition, there may be biologically mutant strains that are engineered to be resistant to various antibiotics.

EnterobacteriaceaeCarbapenem resistant Enterobacteriaceae

Untreatable and hard-to-treat infections from carbapenem-resistant Enterobacteriaceae (CRE) bacteria are on the rise among patients in medical facilities. CRE have become resistant to all or nearly all the antibiotics we have today. Almost half of hospital patients who get bloodstream infections from CRE bacteria die from the infection.

Gonorrhea

Neisseria gonorrhoeae causes gonorrhea, a sexually transmitted disease that can result in group b strepdischarge and inflammation at the urethra, cervix, pharynx, or rectum.

Group B streptococcus

Group B Streptococcus (GBS) is a type of bacteria that can cause severe illnesses in people of all ages, ranging from bloodstream infections (sepsis) and pneumonia to meningitis and skin infections.

Methicillin-resistant Staphylococcus aureus (MRSA)

Methicillin-resistant Staphylococcus aureus (MRSA) causes a range of illnesses, from skin and wound infections to pneumonia and bloodstream infections that can cause sepsis and death. Staph bacteria, including MRSA, are one of the most common causes of healthcare-associated infections.

Salmonella, non-typhoidal serotypes

Non-typhoidal Salmonella (serotypes other than Typhi, Paratyphi A, Paratyphi B, and Paratyphi C) usually causes diarrhea (sometimes bloody), fever, and abdominal cramps. Some infections spread to the blood and can have life-threatening complications.

Shigella

hand washingShigella usually causes diarrhea (sometimes bloody), fever, and abdominal pain. Sometimes it causes serious complications such as reactive arthritis. High-risk groups include young children, people with inadequate hand washing and hygiene habits, and men who have sex with men.

Streptococcus pneumoniae

Streptococcus pneumoniae (S. pneumoniae, or pneumococcus) is the leading cause of bacterial pneumonia and meningitis in the United States. It also is a major cause of bloodstream infections and ear and sinus infections.

Tuberculosis

Tuberculosis (TB) is among the most common infectious diseases and a frequent cause of death TBworldwide. TB is caused by the bacteriaMycobacterium tuberculosis (M. tuberculosis) and is spread most commonly through the air. M. tuberculosis can affect any part of the body, but disease is found most often in the lungs. In most cases, TB is treatable and curable with the available first-line TB drugs; however, in some cases, M. tuberculosis can be resistant to one or more of the drugs used to treat it. Drug-resistant TB is more challenging to treat — it can be complex and requires more time and more expensive drugs that often have more side effects. Extensively Drug-Resistant TB (XDR TB) is resistant to most TB drugs; therefore, patients are left with treatment options that are much less effective. The major factors driving TB drug resistance are incomplete or wrong treatment, short drug supply, and lack of new drugs. In the United States most drug-resistant TB is found among persons born outside of the country.

Typhoid Fever

Salmonella serotype Typhi causes typhoid fever, a potentially life-threatening disease. People with typhoid fever usually have a high fever, abdominal pain, and headache. Typhoid fever can lead to bowel perforation, shock, and death.

Vancomycin-Intermediate/Resistant Staphylococcus aureus(VISA/VRSA)

Staphylococcus aureus is a common type of bacteria that is found on the skin. During medical procedures when patients require catheters or ventilators or undergo surgical procedures, Staphylococcus aureus can enter the body and cause infections. When Staphylococcus aureus becomes resistant to vancomycin, there are few treatment options available because vancomycin-resistant S. aureus bacteria identified to date were also resistant to methicillin and other classes of antibiotics.

Malaria

malariaMalaria is a mosquito-borne disease caused by a parasite. People with malaria often experience fever, chills, and flu-like symptoms. The development of resistance to drugs poses one of the greatest threats to malaria control and has been linked to recent increases in malaria morbidity and mortality. Antimicrobial resistance has been confirmed in only two of the four human malaria parasite species, Plasmodium falciparum and P. vivax.

 WHO: Antibiotic Resistance Now a ‘Major Threat to Public Health’

Antibiotics are powerful tools for fighting illness and disease, but their overuse has helped create bacteria that are outliving the drugs used to treat them.

Antibiotic resistance is a quickly growing, extremely dangerous problem. World health leaders have described antibiotic-resistant bacteria as “nightmare bacteria” that “pose a catastrophic threat” to people in every country in the world. Many more people die from other conditions that were complicated by an antibiotic-resistant infection.

In addition, almost 250,000 people who are hospitalized or require hospitalization get Clostridium difficile each year, an infection usually related to antibiotic use. C. difficile causes deadly diarrhea and kills at least 14,000 people each year. Many C. difficile infections and drug-resistant infections can be prevented.

How Bacteria Become Resistant

When bacteria are exposed to antibiotics, they start learning how to outsmart the drugs. This process occurs in bacteria found in humans, animals, and the environment. Resistant bacteria can multiply and spread easily and quickly, causing severe infections. They can also share genetic information with other bacteria, making the other bacteria resistant as well. Each time bacteria learn to outsmart an antibiotic, treatment options are more limited, and these infections pose a greater risk to human health.

Infections Can Happen to Anyone, Anywhere

Anyone can become infected with antibiotic-resistant bacteria anywhere and anytime. Most infections occur in the community, like skin infections with MRSA and sexually transmitted diseases. However, most deaths related to antibiotic resistance occur from drug-resistant infections picked up in healthcare settings, such as hospitals and nursing homes.

 What you can do to protect yourself against drug-resistant infections

 Bob’s Newheart is providing two answers to this question.  The first from the CDC and the second from a panel of physician experts who were interviewed for the PBS TV show, Frontline.

 CDC Advice

 There are many ways you can help prevent the creation and spread of resistance. First, when you are sick, do not demand antibiotics from your doctor or take antibiotics that were not prescribed to you directly for your specific illness. When taking antibiotics, do not skip doses, and make sure to follow the directions about dose and duration from your doctor.

Second, like all diseases, common safety and hygiene methods can prevent disease and spread. Make sure to:

  • Get updated and regular vaccinations against drug-resistant bacteria
  • Wash your hands before eating and after using the restroom to avoid putting drug-resistant bacteria into your body
  • Wash your hands after handling uncooked food to prevent ingesting drug-resistant bacteria that can live on food
  • Cook meat and poultry thoroughly to kill bacteria, including potential drug-resistant bacteria

What healthcare providers can do to protect patients from drug-resistant infections (CDC)

patientsThere are many ways to help provide the best care to your patients while protecting them against antibiotic-resistant infections.

  • Follow all necessary infection control recommendations, including hand hygiene, standard precautions, and contact precautions.
  • Diagnose and treat resistant infections quickly and efficiently. Treatment options change often because resistance is complex. Make sure to follow the latest recommendations to ensure you are prescribing appropriately.
  • Only prescribe antibiotics when likely to benefit the patient, and be sure to prescribe the right dose and duration.
  • Be sure to clearly label dose, duration, and indication for treatment, and include appropriate laboratory diagnostic tests when placing antibiotic orders. This will help other clinicians caring for the patient to change or stop therapy when appropriate.
  • Take an antibiotic time out, reassessing therapy after 48-72 hours. Once additional information is available, including microbiology, radiographic, and clinical information, a decision can be made on whether to continue the same therapy.
  • When transferring patients, ensure the other facilities are notified of any infection or known colonization.
  • Keep tabs on resistance patterns in your facility and in the area around your facility.
  • Finally, encourage prevention methods with your patients. Make sure they understand how to protect themselves with vaccines, treatment, and infection control practices such as hand washing and safe food handling.

From PBS “Frontline”

 Eight Ways to Protect Yourself from Superbugs

http://www.pbs.org/wgbh/pages/frontline/health-science-technology/hunting-the-nightmare-bacteria/eight-ways-to-protect-yourself-from-superbugs/

protet yourself from superbugsOctober 22, 2013, 9:32 pm ET by Sarah Childress

Everyone is at risk of becoming infected by drug-resistant bacteria, especially as some have begun to appear outside of hospitals in the general community. So how worried should you be?

The PBS investigative show, “FRONTLINE” asked three infectious disease doctors these questions: what the risks are, how to protect yourself, and what questions to ask when a loved one is in the hospital.

Dr. Sean Elliott is the medical director of infection prevention at the University of Arizona Health Network Dr. Brad Spellberg is an infectious diseases specialist at Harbor-UCLA Medical Center Dr. Wendy Stead is an infectious diseases specialist at Beth Israel Deaconess Medical Center in Boston

Frontline condensed their advice into eight handy tips to help keep bugs at bay.

Of course, none of this substitutes for actual medical advice. For serious concerns, always consult your doctor.

 1. Don’t Panic

Everyone may be at risk, but the chances of catching a drug-resistant bug outside of the hospital are small for most. “For the average healthy person walking down the street?  Those organisms are not much of a threat,” Stead says.

“The first principle is to try to live a healthy lifestyle to reduce the need to be in the hospital” where you are more likely to encounter these bugs, Spellberg says. Keep your home and work space clean. Be aware of the food you eat: Wash fruits and vegetables carefully and cook other food properly to reduce your chance of coming into contact with harmful bacteria.

2. Know What to Look For

How do you know if you have a superbug?

“You don’t.  And your doctor won’t either, at least at first,” Spellberg said. “The infections caused by antibiotic-resistant bacteria do not cause different symptoms than infections caused by antibiotic-susceptible infections.”

While it’s impossible to give broad advice about so many different kinds of bacteria — and if you’re concerned, you should call your doctor first — there are some signs that an illness might be more serious. “In general, fevers, if they’re accompanied by shaking chills, if they’re getting worse instead of better, that would suggest there’s a bacterial process,” Elliott said.

With community-acquired MRSA, many people first notice a skin infection or boil that becomes larger and more painful, Stead says.

But if you do suspect such an infection, don’t rush to the emergency room, where you might be exposed to other bugs or infect others. Call your primary-care doctor first for advice.

3. Wash Your Hands with Soap and Water. Really wash them. Doctors say they cannot recommend this enough.

 “Wash your hands regularly and religiously in the normal times that you would think you should wash them,” Stead says. “Give it a good amount of time” — about 15 seconds — “scrubbing hands thoroughly, not just in and out of the water.”

Turn off the faucet using a paper towel.

Alcohol-based hand-sanitizers are handy too, but remember that one bug, C.Diff, is resistant to that as well. But it does respond to soap and water. So Wash. Your. Hands.

4. Be Careful with the Antibacterial Soap

 antibacterial soapThe FDA hasn’t determined whether these soaps are more effective than regular soap, and some doctors don’t recommend using them. “You do not need to take ‘antibacterial’ soaps for routine use,” Spellberg says. “There may be specific medical circumstances that warrant special antibacterial cleansers, but these should be prescribed by your physician.”

“A lot of the antibacterial soaps are more drying to the skin than would be a simple soap,” Elliott says. “So the more that we break down our skin barriers the higher the risk of getting superimposed bacterial. The real key is the soap and water and the physical action  — and keeping hands moisturized. “

5. Ask Your Doctors to Wash Their Hands

“It is every patient’s right to have every health-care provider entering the room to have clean hands,” Elliott says. “We’re supposed to do it, we mandate 100 percent hand- hygiene wash your handscompliance, but the reality is that doesn’t happen,” he says.

Some hospitals even make health-care providers wear buttons encouraging patients to ask them if they’ve washed their hands. Even if they’re buttonless, you should feel free to ask your providers about it.

“Really — we are not offended by that,” Stead says.

6. Get A Flu Shot

“When people get influenza, they actually become at higher risk as they recover for complicating bacterial infections,” Stead says, because people with weakened immune systems are more vulnerable to other bugs.

“Community-acquired MRSA is a big risk in patients who have recently had influenza,” she notes. “They get influenza and they start to get better, and then the staph comes in. … That’s life threatening.  They wouldn’t have been at risk for that if they hadn’t had influenza in the first place.”

7. Ask Whether You Need that Antibiotic

 Doctors sometimes feel pressured by patients or their families to prescribe an antibiotic, even if it’s not necessary. Don’t assume you need one — antibiotics don’t work on viral infections like colds or the flu. If your doctor does recommend one, ask whether you really need it.

“Using antibiotics does kill off non-resistant bacteria in your body and makes you likely to acquire antibiotic-resistant bacteria in their place,” Spellberg says. “If your doctor says that they think your infection is probably caused by bacteria and that you do need an antibiotic, ask, ‘Do I need a broadly active antibiotic, or can I take a narrower antibiotic?’ The broader the antibiotic, the more damage to your normal bacteria can be caused. We want physicians to try to prescribe antibiotics that are as narrow as possible for a given infection.”

8. Advocate for Loved Ones in the Hospital

 patient advocateOne of the ways drug-resistant bacteria spreads in hospital is through tubes inserted in the body, such as catheters. If someone you care about is on such a device, don’t be afraid to ask doctors whether they still need it, and when the tubes can come out.

“Hospitals are much more aggressive about removing things if they’re not needed anymore,” Stead says. “But having patients be aware and try to get things out too is good.”

“Every day that decision needs to be made: Do these things need to stay in or do they need to come out?” Elliott says. The key, he says, is “empowering patients or their advocates to stand up for their health-care needs.”

Conclusion

While physicians and health care workers have a responsibility to provide the best health care, patients also have some responsibility for their own well-being and it boils down to being informed and not being afraid to ask tough questions.

Most of us don’t like challenging physicians, we just assume that will all those many years of education and the raft of framed diplomas on the wall that they must know what they are doing, but the practice of medicine is as much art as it is science.  That means even highly educated medical experts can come to the wrong conclusions, so it is extremely important for patients to expand their knowledge of the conditions to which they are exposed or have contracted, ask tough, knowledgeable questions and then, demand clear unequivocal answers. Doing so could mean the difference between life and death.

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bob minus Jay full shot 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.

Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.  Some of our blogs are specifically related to donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.  It is hard to accept, but no one knows how long they will live.  My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family so there is no confusion when the time comes to donate.  One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

Bob Aronson

Founder of Bob’s Newheart

Established November 3, 2007

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Kidney Disease — A Quiet, Sneaky Epidemic. Are You At Risk?


By Bob Aronson

You are what you eatAs I did the research for this blog, I “Cherry Picked” information from a great many sources.  I am not a medical professional, but made every effort to ensure that the information I used came from experts.  I have identified sources where possible. 

This is a blog, it is made up of a good many opinions.  You should not make decisions about your health based on this or any other posting or even your own research. Only a highly skilled, educated and experienced physician can do that.  Blogs like this can only offer you general information.  As you read this remember that no two people are exactly alike.  What works for one person may cause serious damage to another even though they share similar characteristics.  Your health is too important to be left to chance.  It should be managed by a qualified physician who can focus on your specific condition, examine you, call for appropriate tests, diagnose and then develop a treatment program to meet your unique needs.

Kidney disease is disabling and killing us and no one seems to be paying attention.   To get yours I am going to start this post with some startling, even shocking facts.

  • Chronic kidney disease can lead to kidney failure, heart attack, stroke and death. In factkidney graphic, kidney disease is the nation’s ninth leading cause of death
  • 26 million Americans have kidney disease (many of whom don’t yet know it) and an additional 76 million are at high risk of developing it.
  • Of the 122,000 people on the national organ transplant waiting list about 100,000 are waiting for kidneys and there are not enough to go around.
  • Nearly a half million Americans are getting dialysis and the number is growing rapidly.
  • Diabetics are in the greatest danger of developing kidney disease and The American Diabetes Association says 25.8 million of us have it, that’s 8.3 percent of the U.S. population. Of these, 7 million do not know they are diabetic.
  • And – a final startling fact.  Kidney disease kills 100 thousand Americans a year, that’s more than prostate and breast cancer combined, but kidney disease gets nowhere near the publicity or concern of those two malignancies.

 

Got your attention?  Ok…there’s a lot more to come but first let’s define the topic. – just exactly what do kidneys do and what is kidney disease?  Here’s what the National Kidney Foundation says:

The kidneys are bean-shaped organs, each about the size of a fist. They are located just below the rib cage, one on each side of the spine. The kidneys are sophisticated reprocessing machines. Every day, a person’s kidneys filter about 120 to 150 quarts of blood to produce about 1 to 2 quarts of waste products and extra fluid. The wastes and extra fluid become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.”

 So what is kidney disease?  The Mayo Clinic offers this explanation:

Chronic kidney disease, also called chronic kidney failure, describes the gradual loss of kidney function. Your kidneys filter wastes and excess fluids from your blood, which are then excreted in your urine. When chronic kidney disease reaches an advanced stage, dangerous levels of fluid, electrolytes and wastes can build up in your body.

In the early stages of chronic kidney disease, you may have few signs or symptoms. Chronic kidney disease may not become apparent until your kidney function is significantly impaired.

Treatment for chronic kidney disease focuses on slowing the progression of the kidney damage, usually by controlling the underlying cause. Chronic kidney disease can progress to end-stage kidney failure, which is fatal without artificial filtering (dialysis) or a kidney transplant.”

Causes of Kidney Disease

What causes Kidney disease?  First let’s define terms.  There’s ESRD (End Stage Renal Disease or Kidney failure), where the organs just quit working and there is CKD (Chronic Kidney Disease) which can lead to kidney failure.  The causes could be many but the most common are diabetesDiabetes and High blood pressure.  There are concerns, too, that some environmental factors may also contribute to both CKD and ESRD.  Sri Lanka, for example, has banned Monsanto Corporation’s “Roundup” herbicide on the grounds that it causes both kidney maladies.  Monsanto says its studies offer convincing evidence that the charges are not true.

What to do about it

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.

Even when it is not fatal, the cost of treating end-stage kidney disease through dialysis or a kidney transplant is astronomical, more than fivefold what Medicare pays annually for the average patient over age 65. The charges do not include the inestimable costs to quality of life among patients with advanced kidney disease.

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.  And…it appears as though it is quite common that many physicians overlook simple tests that could save lives.  For example, high blood pressure, is a leading cause of kidney failure yet many physicians don’t check to see how well vital organs are functioning.  Patients, then, have to be their own advocates and insist on tests to see what effect diabetes and/or high blood pressure are affecting their organs. For some reason kidney disease often is not on the medical radar, and in as many as three-fourths of patients with risk factors for poor kidney function, physicians fail to use a simple, inexpensive test to check for urinary protein.  So, our message to you is simple…make sure your doctor checks the amount of protein in your urine at least once a year.

A study published in April online in The American Journal of Kidney Disease demonstrated how common lifestyle factors can harm the kidneys. Researchers led by Dr. Alex Chang of Johns Hopkins University followed more than 2,300 young adults for 15 years. ParticipantJohns Hopkinss were more likely to develop kidney disease if they smoked, were obese or had diets high in red and processed meats, sugar-sweetened drinks and sodium, but low in fruit, legumes, nuts, whole grains and low-fat dairy.

Only 1 percent of participants with no lifestyle-related risk factors developed protein in their urine, an early indicator of kidney damage, while 13 percent of those with three unhealthy factors developed the condition, known medically as proteinuria. Obesity alone doubled a person’s risk of developing kidney disease; an unhealthy diet raised the risk even when weight and other lifestyle factors were taken into account.

Overall, the risk was highest among African-Americans; those with diabetes, high blood pressure or a family history of kidney disease; and those who consumed more soft drinks, red meat and fast food.

Dr. Beth Piraino, president of the National Kidney Foundation, said, “We need to shift the focus from managing chronic kidney disease to preventing it in the first place.”  And one of the ways to prevent kidney disease is to live healthier.  I know, no one wants to hear those words, “Live Healthier.”  Ok, I won’t use them again, but if you eat right and get the right kind and amount of exercise you can avoid kidney problems.  Want some good recipes and ideas for weight control?  Try this link  http://www.kidney.org/patients/kidneykitchen/FriendlyCooking.cfm

You are at greater risk of having kidney disease if others in your family have it or had it, genetic factors are important, but in addition you should know that African-Americans, Hispanic Americans, Asian-Americans and American Indians are more likely than white Americans to develop kidney disease.  I have been unable to find out why.  One Doctor said that prevention is the key and that it is not very complicated.  “I wouldn’t have to work so hard if they didn’t smoke, reduced their salt intake, ate more fresh fruits and vegetables, and increased their physical activity. These are things people can do for themselves. They involve no medication.”

Physicians also urge patients with any risk factor for kidney disease to be screened annually with inexpensive urine and blood tests. That includes seniors 65 and above, for whom the cost is covered by Medicare. Free testing is also provided by the National Kidney Foundation for people with diabetes.

The urine test can pick up abnormal levels of protein, which is supposed to stay in the body, compared with the amount of creatinine, a waste product that should be excreted. The blood tUrine testest, called an eGFR (for estimated glomerular filtration rate), measures how much blood the kidneys filter each minute, indicating how effectively they are functioning.

If it is determined that you have kidney disease you should be referred to a nephrologist.  If you are not referred, ask for a referral.  The Nephrologist will work closely with your family physician to help control the disease.

There are two medications commonly used to treat high blood pressure that often halt or delay the progression of kidney disease in people with diabetes: ACE inhibitors and ARB’s (angiotensin receptor blockers). Careful control of blood sugar levels also protects the kidneys from further damage.

As I conducted the research for this blog I found that one of the most comprehensive websites for factual, understandable information about Kidney Disease is India’s “The Health Site.” It also contains a good deal of advertising and other questionable material, but its information on the kidneys and kidney disease is backed up by solid research.  What follows is some of it.  http://www.thehealthsite.com/

12 Possible Kidney Disease Symptoms

Even an unhealthy lifestyle with a high calorie diet, certain medicines. lots of soft drinks and sugar consumption can also cause kidney damage. Here is a list of twelve symptoms which could indicate something is wrong with your kidney:

  1. Changes in your urinary function: The first symptom of kidney disease is changes in the amount and frequency of your urination. There may be an increase or decrease in amount and/or its frequency, especially at night. It may also look more dark coloured. You may feel the urge to urinate but are unable to do so when you get to the restroom.
  2. Difficulty or pain during voiding: Sometimes you have difficulty or feel pressure or pain while voiding. Urinary tract infections may cause symptoms such as pain or burning during urination. When these infections spread to the kidneys they may cause fever and pain in your back.
  3. Blood in the urine: This is a symptom of kidney disease which is a definite cause for concern. There may be other reasons, but it is advisable to visit your doctor in case you notice it.
  4. Swelling: Kidneys remove wastes and extra fluid from the body. When they are unable to do so, this extra fluid will build up causing swelling in your hands, feet, ankles and/or your face. Read more about swelling in the feet.
  5. Extreme fatigue and generalised weakness: Your kidneys produce a hormone called erythropoietin which helps make red blood cells that carry oxygen. In kidney disease lower levels of erythropoietin causes decreased red blood cells in your body resulting in anaemia.  There is decreased oxygen delivery to cells causing generalised weakness and extreme fatigue. Read more about the reasons for fatigue.
  6. Dizziness & Inability to concentrate: Anaemia associated with kidney disease also depletes your brain of oxygen which may cause dizziness, trouble with concentration, etc.
  7. Feeling cold all the time: If you have kidney disease you may feel cold even when in a warm surrounding due to anaemia. Pyelonephritis (kidney infection) may cause fever with chills.
  8. Skin rashes and itching: Kidney failure causes waste build-up in your blood. This can causes severe itching and skin rashes.
  9. Ammonia breath and metallic taste: Kidney failure increases level of urea in the blood (uraemia). This urea is broken down to ammonia in the saliva causing urine-like bad breath called ammonia breath. It is also usually associated with an unpleasant metallic taste (dysgeusia) in the mouth.

10. Nausea and vomiting: The build-up of waste products in your blood in kidney disease can also cause nausea and vomiting. Read 13 causes for nausea.

11. Shortness of breath: Kidney disease causes fluid to build up in the lungs. And also, anaemia, a common side-effect of kidney disease, starves your body of oxygen. You may have trouble catching your breath due to these factors.

12. Pain in the back or sides: Some cases of kidney disease may cause pain. You may feel a severe cramping pain that spreads from the lower back into the groin if there is a kidney stone in the ureter. Pain may also be related to polycystic kidney disease, an inherited kidney disorder, which causes many fluid-filled cysts in the kidneys. Interstitial cystitis, a chronic inflammation of the bladder wall, causes chronic pain and discomfort.

It is important to identify kidney disease early because in most cases the damage in the kidneys can’t be undone. To reduce your chances of getting severe kidney problems, see your doctor when you observe one or more of the above symptoms. If caught early, kidney disease can be treated very effectively.

http://www.thehealthsite.com/diseases-conditions/12-symptoms-of-kidney-disease-you-shoulnt-ignore-world-kidney-day-special/

Kidney Disease Prevention

Ten Steps you can take

 Our kidneys are designed such that their filtration capacity naturally declines after the age of 30-40 years. With every decade after your 30s, your kidney function is going to reduce by 10%. But, if you’re going to increase the load on your kidneys right from the beginning, your risk of developing kidney disease later in life will definitely be higher. To be on the safe side, follow these few tips and take good care of your kidneys to prevent the risk of developing kidney problems.

1. Manage diabetes, high blood pressure and heart disease: In most of the cases, kidney disease is a secondary illness that results from a primary disease or condition such as diabetes, heart diseases or high blood pressure. Therefore, controlling sugar levels, cholesterol and blood pressure by following a healthy diet, exercise regimen and medication guidelines is essential to keep kidney disease at bay.

2. Reduce the intake of salt: Salt increases the amount of sodium in diet. It not only increases blood pressure but also triggers the formation of kidney stones. Here are a few tips to actually cut down your salt intake.

3. Drink lots of water every day:  Water keeps you hydrated and helps the kidneys to remove all the toxins from your body. It helps the body to maintain blood volume and concentration. It also helps in digestion and controls the body temperature. At least 8-10 glasses of water a day is a must.

4. Don’t resist the urge to urinate: Filtration of blood is a key function that your kidneys perform. When the process of filtration is done, extra amount of wastes and water is stored in the urinary bladder that needs to be excreted. Although your bladder can only hold a lot of urine, the urge to urinate is felt when the bladder is filled with 120-150 ml of urine.

So, if start ignoring the urge to go to the restroom, the urinary bladder stretches more than its capacity. This affects the filtration process of the kidney.

5. Eat right:  Nearly all processes taking place inside your body are affected by what you choose to eat and how you eat. If you eat more unhealthy, junk and fast food, then your organs have to face the consequences, including the kidneys. Here’s more information on the relation between unhealthy diet and kidney damage.

You should include right foods in your diet. Especially foods that can strengthen your kidneys like fish, asparagus, cereals, garlic and parsley. Fruits like watermelon, oranges and lemons are also good for kidney health. 

6. Drink healthy beverages: Including fresh juices is another way of drinking more fluids and keeping your kidneys healthy. Juices help the digestive system to extract more water and flush out wastes from the body. Avoid drinking coffee and tea. They contain caffeine which reduces the amount of fluids in the body. So, the kidneys have to work harder to get rid of them.

If you’re already suffering from kidney problems, you should avoid juices made from vegetables such as spinach and beets. These foods are rich in oxalic acid and they help in the formation of kidney stones. But you can definitely have coconut water.

7. Avoid alcohol and smoking: Excess intake of alcohol can disturb the electrolyte balance of the body and hormonal control that influences the kidney function. Smoking is not directly related to kidney problems but it reduces kidney function significantly. It also has an adverse effect on heart health which can further worsen kidney problems.

8. Exercise daily: Researchers believe that obesity is closely linked to kidney related problems. Being overweight doubles the chances of developing kidney problems. Exercising, eating healthy and controlling portion size can surely help you to lose extra weight and enhance kidney health. Besides, you will always feel fresh and active. Here’s more about how obesity and kidney disease are linked.

9. Avoid self-medication: All the medicines you take have to pass through the kidney for filtration. Increased dosage or taking medicines that you are not aware of can increase the toxin load on your kidneys. That’s why you should always follow dosage recommendations and avoid self-medication. Read more about how drugs affect the kidneys. 

10. Think before you take supplements and herbal medicine: If you’re on vitamin supplements or if you’re taking some herbal supplements, you should reconsider your dosage requirement. Excessive amount of vitamins and certain plant extracts are linked to kidney damage. You should talk to your doctor about the risk of kidney disease before taking them.

Dialysis and Transplantation

By Ed Bryant

(I could find no additional information about Mr. Bryant other than the following website.  His information, though, is sound).

https://nfb.org/images/nfb/publications/vod/vow0006.htm

Dialysis

Dialysis is not an “artificial kidney.” A person undergoing hemodialysis must be hooked up to a machine three times a week, three to four hours per session. A normal vein cannot tolerate the 16–gauge needles that must be inserted into the arm during hemodialysis, so the doctor must surgically connect a vein in the wrist with an artery, forming a bulging fistula that will better accommodate the large needles needed for treatment.dialysis

Like the kidney, a hemodialysis machine is a filter. Where it uses tubes and chemicals, the kidney uses millions of microscopic blood vessels, fine enough to pass urine while retaining suspended proteins. Long–term high blood glucose can significantly damage the kidney’s filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease. Long–term diabetics often have cardiovascular and blood pressure problems, and the added strain of hemodialysis, with its rise in blood pressure straining eyes and heart function, can be too much for some. The diabetic dialysis patient spends, on the average, 33% more time in the hospital than does the non–diabetic dialysis patient, according to 1999 USRDS figures.

Some patients choose CAPD (continuous ambulatory peritoneal dialysis) or its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. Unlike hemodialysis, which uses a big machine to remove toxic impurities from the blood, peritoneal dialysis works inside the body, making use of the peritoneal membrane to retain a reservoir of dialysis solution, which is exchanged for fresh solution, via catheter, every four to eight hours. CAPD is carried out by the patient, who simply exchanges spent for fresh solution, every four to eight hours, at home, at work, or while travelling. CCPD, its variant, makes use of an automated cycler, which performs the exchanges while the patient is asleep. Although more complicated and machine–dependent, it does allow daytime freedom from exchanges, and may be the appropriate choice for some. Though the risk of infections is heightened (as it is with any permanent catheterization), these two processes have advantages, one being that insulin can be added to the dialysis solution, freeing the patient from the need to inject, and giving good blood sugar control.

Transplantation

Kidney transplantation is a logical alternative for many. It substantially improves a patient’s kidney transplantquality of life. Although the transplant recipient must be on anti–rejection/ immunosuppressive therapy for life, with the inherent risk from otherwise nuisance infections, a transplant frees the patient from the many hours spent on hemodialysis procedures each week, or from the periodic “exchanges” and open catheter of CAPD, allowing a nearly normal lifestyle. For those ESRD patients who can handle the stresses of transplant surgery, the resulting gains in physical well–being add up to real improvement in quality of life and overall longevity.

“Fifty percent of all kidney transplantations taking place today are into diabetics,” states Giacomo Basadonna, MD, PhD, a transplant surgeon at Yale University School of Medicine, in New Haven, Connecticut. He reports that success rates are identical with kidney transplants performed on non–diabetic ESRD patients. “Today,” he advises, “average kidney survival, from a living donor, is greater than 15 years.”

One of the areas where we are seeing rapid improvement is immunosuppressive medication. The traditional mix of immunosuppressants: cyclosporine, prednisone, imuran, is giving way to more targeted medications that may have fewer side effects. Cellcept, by Roche/Syntex, and Rapamycin (Rapamune), by Wyeth/Ayerst, have been approved by the FDA, and others are being tested. The risk of organ rejection is always present, but each new development increases the chances of success.

I and others knowledgeable in kidney transplantation advise you to pick the best transplant center possible. Once you have read their statistics, ask your prospective center the following questions. If they don’t answer to your satisfaction, you should consider going to another center.

1. Do you have an information packet for prospective donors and recipients?

2. Can you put me in touch with someone who has had a transplant at your center?

3. What is your “graft survival” (success) rate?

4. Who will my transplant surgeon be? If a fellow or resident, will he/she be supervised by a practicing transplant surgeon?

5. How long have your current surgeons been doing kidney transplants? How many have they done? That your center has 35 years experience with kidney transplants is of little consequence if my surgeon has only done ten in his or her career.

6. What is the average post–operative stay in your hospital?

7. When I come for my transplant, or come back for follow–ups, will there be any affordable housing for me and/or my family? (Ronald McDonald House, or other lodging with discount rates…) or will I get stuck in a luxury hotel for $125 a night?

8. How often will I need to come back to the center for follow–ups? Can my nephrologist do the blood tests and send you the results?

9. Can you recommend a nephrologist in my area?

10. Do you have a toll–free number to call for after–transplant information?

11. What is your policy on people with insufficient health insurance? Will you work with an uninsured patient? What will it cost?

12. Are you prepared to satisfy my doubts? Will you show me the documents that answer my questions? Will you guarantee the price quoted?

Conclusion

Kidney disease can be manageable if caught early and treated appropriately.  The information contained in this blog should allow you to make good decisions that can provide you with the quality of life you seek and deserve.  For more information about kidney disease and treatment here are some additional sources.

  • The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

http://tinyurl.com/qfna7f2

 

 

 

 


My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient,
 the founder of Facebook’s nearly 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.

Transplants — With An Emphasis on Recovery (by organ)


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

THE DIAGNOSIS

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

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

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

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

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

THE SURGERY

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

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

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

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

THE RECOVERY

Critical Information You Need To know

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

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

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

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

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

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

When will I be able to return to work?

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

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

How soon can I take a vacation?

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

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

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

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

What you can expect

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

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

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

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

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

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

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

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

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

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

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

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

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

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

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

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

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

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

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

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

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

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

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

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

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

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

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

After the Hospital

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

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

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

Some possible transplant complications and medication side effects include:

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

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

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

Will I be in pain?

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

Where will I spend my time in the hospital?

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

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

What are the possible risks and complications?

You team is watching for the following possible complications:

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

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

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

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

What about the possible risk of infection?

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

How long before I can leave the hospital?

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

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

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

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

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

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

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

UNOS CEO: Study Could Redefine “Medically Suitable” Donors


On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

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.

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.

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.

 

Free, Professional Coaching if You’ll Give Talks On Organ Donation.


If you are a member of Organ Transplant Initiative (OTI) on Facebook or if you become one at any time (it’s ok to belong to any number of other similar groups at the same time) we invite you to take advantage of this exclusive offer. It is a challenge to get people to work harder on increasing organ donation. Too many people are dying while waiting.

If you will arrange for a two speaking dates to an audience of your choice on the subject of organ/donation transplantation, I will provide you with a factual, hard hitting, convincing PowerPoint presentation (one you can edit to fit your own style) visuals included at no charge. I will also offer you professional advice on getting and keeping the attention of an audience, motivating them to do what you want them to do, how to use your voice properly, how to breathe, body language and so much more. but, the coaching offer only stands if you use our presentation (we will very carefully research each fact offered). As a stand-alone the coaching will apply to many other areas of your life and it’s up to you how you use it.

All you have to do is volunteer to make two presentations during 2012 about donation/transplantation to the audience of your choice; family, service club, dinner group, church group, as the featured speaker at a banquet or anywhere else. You will be responsible for seeking out and securing those speaking dates. I can’t promise that I can give you perfection, but in a few short minutes or hours I can help you become a more confident, powerful and convincing speaker. All you have to do is send me a personal email at bob@baronson.org and say, “I’ll do it” and we can work toward arranging the proper communication vehicle to help refine your skills. If you just want the presentation and no help from me…that’s fine too. You may use the presentation I write without permission as long as you give attribution to the Organ Transplant Initiative for having provided you with some assistance. You do not need to mention my name.

I know public speaking can scare the bejeebers out of people but for many there is good sound advice that can help you through that. One thing for sure the advice you get will help you in many ways that go well beyond talking about organ donation. The skills you learn will be applicable in job interviews, courtroom and/or regulatory agency testimony, media interviews, sales presentations, regular conversation, and even giving a talk to co-workers about any subject (sometimes it even works with teenagers and spouses).

I spent all of my working life in communications including owning a firm with clients around the globe many of them in the Fortune 50 of top corporations. I don’t know why the good lord gave me this modicum of talent but I think he’d like me to share it to help save some lives, hence this offer.

I am already working on developing a slide show and hope to finish it within a month or two. Once done I will share it with you and we can begin the process. I’m hoping that eventually this will turn into a sort of national OTI speakers bureau with resources in every state and a message that is powerful, consistent and heartfelt.

 

I hope many of you will find it in your hearts to commit to this. With under 50% of Americans signed up to be organ donors there is ample opportunity to make a difference. Please become part of it and I promise I will do everything I can to make you successful because if that happens, we are going to save a lot of lives.

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.

Donation to Transplantation — How it Works


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

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

How It Works

By Joel Newman, UNOS

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

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

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

 

Transplant Evaluation and Listing

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

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

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

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

Organ Donation and Recovery

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

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

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

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

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

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

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

Organ Allocation

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

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

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

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

The OPTN matching system is programmed to reflect many factors.  These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system.  Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles.  One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need.  The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward.  The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

  • how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
  • (for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
  • the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
  • if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation.  We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

-0-

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

Give A Million Dollar Gift That Won’t Cost You a Penny


This is a guest blog written by Ashley Tenczar Curran of Boston, Massachusetts.  Her husband Peter desperately needs a new liver.  He has been on the national transplant list for two and a half years.  Ashley is a dear friend of mine and an administrator of my donation/transplantation Facebook page, Organ Transplant Initiative (OTI).

Heroes of Hope

So often I will read , with sadness, an obituary of a friend or relative that says: “He/She lost their battle with ___(disease the person suffered from) and passed away “.

I will hear people speak of this person as if they stepped away from the pitcher’s mound, defeated, and limped home to sulk in their bedroom. “They are at peace, they struggled, but now they are home”.

When we speak of a person who has been waiting on a transplant list, however, I know that I could never say they “lost” any battle, for we who have been caregivers know that this “battle” that is waged on the human body is like no other. An organ has failed in the body, yet this person is alive.

When I really stop to contemplate that, it is an awesome responsibility that the patient and caregiver take on when they and their transplant team decide to be “evaluated for possible placement on the transplant list”.

First off, the fear of the transplant itself kicks in, for though research and technology has come a long way, especially with mortality rates and the new generation “cyclosporine” anti-rejection drugs that  have given transplant recipients much longer survival rates and less time spent in the hospital, but  the operation itself is mind boggling. I cannot even imagine, even after over 2 years of waiting on the transplant list with my husband, saying “goodbye” to him as they wheel him in to the surgery of a lifetime.

While one is waiting and being evaluated, there are dozens of medications that have to be prescribed, filled, changed, renewed, filled again, and taken every day. One cannot “skip” a medication that is basically functioning as your heart, liver, kidneys, and so on. I was a health professional for over 6 years, and I have trouble keeping track of all of these pills, even with all of the devices and alarms, computer programs and other ways to organize them. We struggle every single day to keep this “battle” going.

A supply of these meds has to always be on hand, and I will bet I am not alone in having dealt with hte “on call” doctor who has no idea who we are, and has to read all about our loved one in less than a minute and make a potentially life changing decision on a Saturday night to continue this ritual of keeping what is left of the organ functioning.

While one is being evaluated, the treatment must continue, and it does. Paracentesis (withdrawal with a long needle of accumulated fluid around the abdomen), Thoracentesis, (fluid withdrawn in much the same procedure around the lining of the lung), Colonoscopy, Endoscopy, Cat Scans, Ultrasounds, and dozens of others, just to name a few, have been our life for the past two years.

We are the lucky ones, however, with just the feeding tube in place or my husband, because some people need to be on continuous treatments, such as dialysis, breathing machines, oxygen, and so many other life preserving therapies.

Many of these are painful, and exhausting. Yet somehow, some way, we find the will to go on.

We wait one more day, one more hour, praying that someone will pay attention to the “battle” going on in the hospital room, or home, of our loved one. We pray that someone, somewhere, will go online, or to the Registry of Motor Vehicles, and fill out that form to become an organ donor “now” , rather than “later”.

Caregiver and patient, family, friends,chaplain support, medical team assistance,(and of course, humor!) all combined to keep just ONE life intact. It may seem foolish to some, when thousands are dying around the world of starvation, earthquakes , and other disasters and tragedies, but when it is your husband, your mother, father, brother, sister, or otherwise, it is the most important life there is.

This is humanity at it’s best.

This is the reason I cannot understand the missing piece of it all. Where are the organ donors? The rate of donation is astonishingly low in almost every state!

Of course there are plenty of stories I could pull at any given day from the media/ net, (or from having been in the “OTI” (Organ Transplant Initiative group on Facebook), personal stories of dear friends ),of the strength and courage of a living donor, or a deceased donor, who puts forth their life and everything that entails, and gives part of it to another human being. These stories are real, and I don’t want to underscore those absolute heroes who give freely of their own body so that another person, be it stranger or loved one, can go on and complete their life cycle.

But I cannot for the life of me understand why the rate of organ donation is so low! People always talk about charities, and non-profit organizations that they are involved in, and how the recession has caused them to have to “cut back”: but here is a place to give a MILLION BUCKS, without having to spend a dime, to someone their life back, and yet there is a negative response from so many.

I have heard so much in the last couple of weeks about “James Whitey Bulger”, the “big and scary gangster” from my home of Boston, and 24/7 media coverage about a man who murdered 19 people, who took AWAY 19 lives, and while my sympathy is with the victims of this coward, I cannot stop and compare the statistic of the number “19”.

19 people die every day in the U.S. from lack of a life saving organ.

Imagine if all of that senseless and repetitive coverage of a man who will problably never see justice shifted, and turned to something positive, a push for new organ donors to register, stories of the lives of those who have “been in the battle”.

Whitey, I dare say, would have a fit. It would be like the devil himself losing the attention of the world.

I flip through the gauntlet of these “reality shows”, from the industry of crab fishing (Deadliest Catch) to saving whales, (Whale Wars) , parking meter attendants and their exciting life, (Parking Wars) and medical shows about “real life” medical emergencies, but not ONE show about Transplants.

What about the “Transplant War”?

Those who are winning it would love to talk about it.

Here is an opportunity for an “up and coming” reality show writer to really make their mark,but for some reason, this intriguing subject rarely appears on my TV.

What could possibly be more inspiring then a” transplant reality series”? The human epic drama about a war waged against your own body. The “altruistic” demeanor of the whole situation, humanity at it’s best, and worse.

The Gift of Life that is given every single day, to little children who pass away suddenly, and hearing from the heroic parents who can actually see past their grief for even one minute to think about another person’s child is nothing short of a spiritual awakening.

I believe the Organ Donation rate would double almost over night. I am an optimist, and when a particular cause is taken up in America, it spreads like wildfire.

The people who may have needed to see this “reality show”?

The man who got shot outside a pre-school in Boston yesterday morning thought he had plenty of time, he was about 21 years of age.

Those people who die in car crashes 2 miles from their home thought they had plenty of time also.

The persons who hide behind their “religion”, without even consulting their spiritual leaders on the subject, and say “I can’t be an organ donor because I am ___” (fill in almost any religion, because I have heard them all!) Amish, Jewish, Muslim, Catholic, Christian, …all of them are religions that absolutely encourage the individual to “follow their conscience” and to “support , continue, and pursue life in any way possible”. (The current Roman Catholic Pope’s words)

So, in closing, If you ARE an organ donor, if you have given of yourself, THANK YOU from the bottom of my heart, and dare I speak for those I know, and those I love. You will be rewarded, and you have my undying respect and love, whether you are alive or deceased.

If you have not “checked it (organ donation) out”, NOW would be the time.

If you are waiting for an invitation, I just sent you one. No need to RSVP, just go to the United Network for Organ Sharing’s website (UNOS.ORG) for more information, and to sign up online, or for locations on where you can sign up in person.  You can also become a donor on line by going to http://www.donatelifeamerica.com or by calling your local Organ Procurement Organization (OPO)

Oh, and “NBC, CBS, FOX, DISCOVERY CHANNEL, A+E.”…if you are watching, call me. (I don’t have your number, and have not the faintest idea how to get a hold of you)

I have a great script for your first episode of “Transplant Wars”, and the name of the first episode is “HEROES OF HOPE”.

This name is because the transplant recipients, the organ donors, the caregivers, the medical teams, the researchers…they really are “HEROES” of “HOPE”. My heroes.

*Thank you to Bob Aronson for being our “hero of hope”. He has been there for my husband and I for over 2 years, since the minute we met online, and we could never repay him for his support and love during this “battle” we are going through that seems to never end. Anyone who says you can’t make life long friends on FB hasn’t met Bob. Come join our group, “OTI” (Organ Transplant Initiative), you will be made to feel right at home!

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Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

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

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.

In Honor of Organ Donors and their Families


We read and hear a great deal about the shortage of organs, incredible stories about “nick-of-time” transplants, multiple transplants and innovations in transplantation but we don’t hear much about the donors who make this all possible.  Being an organ donor is one of the most unselfish, compassionate and noble gestures one can make.  It is particularly noble because in most cases the donor will not be around to hear the praise and thanks.  Paying tribute to donors and their families is one of the most important things we can do.  These mostly anonymous people deserve to be in our thoughts and prayers every minute of every day. 

As you know I am a heart transplant recipient, I only know that my donor was a 30 year old male from South Carolina, nothing more.  I have written to the donor family expressing my gratitude but, like many donor families, they have chosen to remain anonymous.  There are many more, however, who choose to be public about their experience and how we support and honor them is the subject of this blog. 

Prior to my retirement I was honored to have as a client, LifeSource, an organ procurement organization (OPO) that serves Minnesota, the Dakotas and part of Wisconsin.  They were not only a valued client but also became dear, dear friends.  Rebecca (Becky) Ousley is one of the many dedicated people who help to further the LifeSource mission.  Like most OPOs LifeSource does a wonderful job of promoting organ donation and coordinating transplants.  But they are so much more than that, they offer heart felt support to the living, too, especially donor families.  Below is a reprint of their latest blog.  Please read and comment either to this blog or directly to LifeSource at http://www.life-source.org/

From “The Source” by Becky Ousley, LifeSource

One of the things I find remarkable about the work we do at LifeSource is the extent to which we are committed to supporting donor families, both at the time of donation and for years afterward.  Donor families are the cornerstone of the work that we do – without them there would be no transplants.  It is an incredibly generous gift.

I’m always so excited to tell people about this, as many people don’t realize that donor families receive this kind of support in the months and years following donation.  At LifeSource donor families are part of our aftercare program for as long as they wish; we have some families that have been coming to our events for nearly 20 years!   In addition to receiving support and remembering their loved ones, these long time donor families are also able to provide hope and perspective to our families that are more newly bereaved.  That too, is a wonderful gift.

Part of our aftercare program involves facilitating letters between transplant recipients and donor family members.  Either party can write to the other; often, recipients want a chance to say thank you for their gift of life or donor family members may want to share memories about their loved ones.  Donor families and recipients can request to have direct contact with one another and, sometimes, they even meet.  These are often very rewarding relationships.

This was the case today, when I was honored to attend a donor family and recipient meeting with my colleague Jill, whose job it is to support these families.  She connected this pair after some persistent detective work, as the donation and transplant took place more than 40 years ago in 1966!  It was an incredible meeting and I think we were all touched when Steve, the kidney recipient, immediately hugged the donor’s sister and told her he had been waiting for 43 years to give her that hug.

KARE-11 was there to document this wonderful meeting and I encourage you to watch the story by clicking here.

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  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.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts. 

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