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From a Medical Nightmare to a New Life –The Curt Green Story


curt greenIntroduction by Bob Aronson

Story by Curt Green

 inspirational quoteIntroduction

This is the first in a series of blogs about people with the Helen Keller, Jesse Owens spirit.  Let me explain.  Some people inspire us to soar to great heights because they did.  Some people see adversity as a speed bump and confidently roll over it.  Some people are “unsinkable” and bounce back no matter what.  This is the first in a series of blogs about ordinary people who do just that.

I was inspired to write these blogs by two of my personal heroes, Helen Keller and Jesse Owens.  If you are not familiar with these names here are some very brief bios.

Helen Keller

helen kellerHelen would not be bound by conditions. She became deaf and blind before she turned two as the result of scarlet fever.  She learned to read (in several languages) and even speak, eventually graduating with honors from Radcliffe College in 1904. It is remarkable that she accomplished any of this in an age when few women attended college and the disabled were often hidden and spoken of only in hushed tones.

 Keller’s many other achievements are impressive by any standard:

hellen Keller with President Eisenhower she authored 13 books, wrote countless articles, and devoted her life to social reform. She lectured on behalf of disabled people everywhere. She also helped start several foundations that continue to improve the lives of the deaf and blind around the world.  She is remembered for a great many pieces of wisdom but this is my personal favorite:

“Although the world is full of suffering, it is full also of the overcoming of it. My optimism, then, does not rest on the absence of evil, but on a glad belief in the preponderance of good and a willing effort always to cooperate with the good, that it may prevail.” – Helen Keller

Jesse Owens

Jesse owens runningJesse was an athlete, a black athlete and a very special one. His performance on a spring afternoon in 1936 was beyond unbelievable.  In 45 minutes, he established three world records and tied another, but what made the accomplishment special, extra special is that he did it in Nazi Germany before a regime of white supremacists.    

Jesse Owen’s story transcended athletics. Berlin, on the verge of World War II, was Jesse Owensbristling with Nazism, red-and-black swastikas were flying everywhere while Adolf Hitler was busy haranguing about the “unbeatable master race” of blond, blue eyed Aryans. 

When Owens finished competing, the African-American son of a sharecropper and the grandson of slaves had single-handedly crushed Hitler’s myth of Aryan supremacy.  On the sacred soil of the Nazi Fatherland he humiliated the so-called master race by winning four, count ‘em, four gold medals.  Hitler, left the stadium. 

I never met Helen Keller but I had the distinct pleasure and honor of meeting and interviewing Jesse Owens when I was a young radio announcer in 1961.  I got his autograph for my brother who treasures it to this day.  Owens lived by a very simple motto, “One chance is all you need!”

Our Keller/Owens courage series will focus on people, just ordinary people who have managed to survive and win under amazingly adverse circumstances

Curt Green.

Ocurt greenur first story is about Curt Green.  I met Curt as the result of a long and thoughtful comment he made about one of my Bob’s Newheart blogs.  His words  were insightful, compelling and inspirational.  Those same terms describe his story, one that truly is in the Keller/Owens spirit .

  

Whenever I find myself overwhelmed, depressed or in need of a motivational kick in the pants, I think about Curt’s incredible journey, his undying faith and his commitment to “Paying it forward.”

 Curt Green is a very special man and I am honored to call him a friend.  Thank you Curt for  taking the time to write your story.  It will serve to inspire others for a very long time.   

The Sandwich

In September of 2005 at age 44 I was working for Schwans as a route manager (The Schwan Food Company is a multi-billion dollar privately owned company with 15,000 employees.  They sell frozen foods from home delivery trucks, in grocery store freezers, by mail, and to the food service industry). My work days where long and it was usually after 11 P.M. when I got home feeling both tired and hungry.   On this particular evening I didn’t feel like cooking so before I went to bed I p b and j sandwichhad a plain old peanut butter and jelly sandwich.  While that may sound pretty bland and harmless it turned out to be anything, but. To say it didn’t’ sit well would be putting it mildly.  It wasn’t long after I ate it that something in that sandwich triggered a gall bladder attack.  Despite experiencing significant discomfort I managed to find my way to the Emergency Room in a Fairmont, Minnesota hospital.

On arrival they took X-rays and decided I needed care they could not provide so they wheeled me into an ambulance and sent me to the famed Mayo Clinic in Rochester, Minnesota.  The highway the ambulance used to get me to Rochester was not in good Mayo clinic Rochester, Minnesota gonda bldngcondition so the 120 mile ride which took about two hours was rough and uncomfortable. Finally, though, at 5 AM the next morning I was admitted to Mayo’s St. Mary’s hospital.

The Problem

The Mayo doctors wasted no time and after some tests to determine the severity of my condition and to locate the gall stones, they did an ERCP (Endoscopic retrograde cholangiopancreatography). ERCP is an x-ray exam of the bile ducts that is aided by a video endoscope which allows the physician to view the inside of the stomach and duodenum, and inject dyes that can be seen on x-rays.   The lighted probe that goes down your throat has a tiny claw at the end that allows them to open the passageway and let any gall stones pass.

Complications

It all seemed to go well but there was a complication.  The surgeons didn’t know until later that my intestine was punctured during the procedure and that’s where my long journey began — instead of a normal recovery from a routine surgery my condition worsened.  I spiked a fever and kept getting sicker, so sick that my kidneys shut down.  That’s when they had to take drastic measures to save my life.  What started as a simple gall stone attack had now turned into a life threatening situation.  I can only thank God I was at Mayo where they are well equipped to handle such an emergency.  It was going to be 207 days before I was released from the hospital.  That simple peanut butter and jelly sandwich changed my life and almost ended it.

In order to keep me comfortable yet treat me effectively and remove the infection physicians put me in a drug induced Patient in ICucoma which lasted 21 days into October.  While comatose they opened my abdominal cavity and washed out handfuls of dead, blackened fat. This procedure helps to ensure the removal of the infections, something they had to do seven times over the course of the month.  Naturally I remember none of it.  As part of my recovery the Mayo Doctors then placed me in a special bed that would rock me gently back and forth so that no fluids would settle in my body, but even with that extraordinary step my hands and head swelled to almost twice their normal size.

When I finally awakened I had over 12 tubes coming out of my stomach which were not only for drainage but also for feeding and other healing purposes.  In the middle of my stomach there was a very large 9 inch diameter hernia.  For three months I was unable to drink anything and could not eat for six months.

Studies indicate that being immobilized for long periods has a very negative effect.  It is estimated that we can lose 10 to 20 percent of our muscle strength per week in bed so upon awakening from the coma I found that the combination of immobilization and the surgery left me so weak walking was almost impossible. Because of all the drainage and feeding tubes, I was forced to lie on my back for the first 2 months. Three times a week, they would wheel me down to the dialysis unit to undergo the cleansing process.  It was their hope that my kidneys would be able to bounce back from the trauma, but as time went on and despite the best efforts of the Mayo team, the possibility of this happening decreased. We still had a long, long way to go before I would walk out of the hospital and return to anything that even remotely resembled a normal life.

Probably the scariest time for me was in early March of 06, I had a blood clot pass through my lungs and I could not catch my breath. Not being able to breathe is very frightening, I was gasping for air while the medical team worked feverishly to get it under control.  It took a couple of hours, but finally they were able to transfer me to an Intensive Care Unit (ICU).  At the same time I had a skin graft done for my hernia that developed during the two weeks following the initial surgery.

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Yale, South Dakota jpegI was in the hospital for 207 days or 7 months when I was finally discharged on April 23, 2006. Weak, and unable to care for myself I went to Yale, South Dakota to live with my parents and try to recover. They estimate that for every day you are in the hospital, it takes 3 days to recover.

.I had a long road ahead, my kidneys were still not functioning properly and never would. I started dialysis in Huron, S.D and made 3 trips a week to the dialysis unit there on Tuesday, Thursday, and Saturday.

Dialysis

Dialysis is a procedure of cleaning the blood and taking out excess fluids since the kidney cannot produce urine. dialysisOnce connected to the machine it takes about four and a half hours for the cleansing process to be completed.  The procedure leaves you drained of energy so for all practical purposes it results in a lost day.

If you are on dialysis your liquid intake is very limited and almost impossible to follow. It is recommended that you consume less than 50 ounces between treatments. I had great difficulty with that limitation so they would have to remove 10 to 12 pounds of fluid with each treatment and that’s a problem because too much liquid represents a danger to the heart.

I was also limited in what I could eat since the kidney works at balancing potassium and phosphorous in the body. Too much potassium could cause a heart attack, therefore, it was recommended that I not eat potatoes, tomato products, or any dairy products.

From May of 2006 to October of 2007, I went to Avera McKennan hospital in Sioux Falls, South Dakota ten times because the vein in my arm kept narrowing and the blood could not return to it causing extreme swelling.  With the exception of being admitted to the hospital just once all of the trips involved outpatient surgery to correct the swelling.  Finally they put in a stent which solved the problem.

In March of 2007 I saw Dr. Fred Harris in Sioux Falls who did a masterful job of fixing the hernia in my stomach. Although the surgery was a success, infection kept me in the hospital for two weeks. I also had a new dialysis catheter put in, a fistula (the Medline Encyclopedia defines fistula as an abnormal connection between an organ, vessel, or intestine and another structure). In my case the fistula was combining a vein and an artery in my arm to allow the dialysis needle to enter and function properly.  Without the fistula the vein would collapse.

Kidney Transplant

During this time it was a matter of recovery and being evaluated for a kidney transplant so I could be placed on the national transplant list. I had decided to have the transplant done in Sioux Falls where I lived only because it was close.  While I was excited about getting on the list I was not optimistic about getting an organ.  The fact is, I really had little hope of getting a kidney because my blood type, which is O, is quite common and that means kidneys of that type are in greatest demand. The doctors told me that it would be at least a 5 year wait.  When I asked what the average life span of someone on dialysis, they said 5 years. So, I just resigned myself to thinking that dialysis would be a part of my life until I die.

Kidney transplantThen in 2008 a miracle happened.  A friend of the family came forward in January and offered to donate a kidney. This is so much better than a kidney from a deceased patient because they last much longer.

My donor Joey Bich (pronounced Bish) wanted to have it done at Mayo In Rochester so that’s where I went for my evaluation in June.  Finally I knew beyond a doubt that the transplant would be a reality, it was really going to happen.  Dialysis was going to end and I had a shot at a normal life again.  And…I was very happy with the decision to go to Mayo because of their experience.  They average a transplant every day.   Joey and I were approved and the transplant date of July 25, 2008 was set.

Remnants of that black cloud that followed me around for moths after the PB and J sandwich still appeared, though.  It seems as though when it comes to things medical issues, complications are a fact of life for me.  While the transplant was successful, it was not without a hitch.  What is normally a two-hour surgical procedure that some surgeons are now calling “Routine surgery” was for me an 11 hour ordeal because there was so much scar tissue on the right side of my abdomen.  As a result they had to put the kidney on the left side. My doctor told me in confidence later that he was about ready to give up, obviously he didn’t, but it still wasn’t’ over.  A day later they had to open me up again because there was a leak in one of my bowels. They fixed it but my recovery was delayed by about a month. I left the hospital on August 11 and had to stay in a motel till September 10 for checkups. Then I was free to go home.

Good news…It looks like the bad news stopped.  Since being discharged for the final time my future has been wide open and bright.  Now I can drink as much as I want and eat what I like without fear or worry. I can travel for longer than a day and am free now to live like a normal human again, just as I did before that fateful PB and J sandwich.  I have a life again and all because someone was brave, kind and generous enough to give up one of his kidneys.  Thank you Joey…thank you.

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Curt was featured in a news report that you can watch on YouTube.  It is called “Three year detour” and there is the link. http://www.youtube.com/watch?v=ZAVFh2vcG2Y

If you would like Curt to speak to your group, you can contact him here. curtgreenspeaks@yahoo.com

About Curt Green. 

He describes his life this way:

“Right now, I live in Sioux City, Iowa and work a couple of part-time jobs. My hobby is being a baseball fan but my main focus is doing anything I can to promote organ donation. I speak at high schools maybe 5 to 10 times a year, visit my local dialysis unit to bring hope to those still hooked to a machine, and am involved with a new non-profit group called Doug’s Donors who mission is to assist those on dialysis in getting on a transplant list.

I have 3 daughters and 2 sons with a daughter in North Carolina, my oldest son in Minnesota, my next son and youngest daughter in Sioux City with me and my other daughter studying to be a Vet Tech in Rochester, MN

Curt Green is a very honest and straightforward man.  When I asked him about his faith and how prayer helped him in his recovery he said, “One thing I learned is that when I was sick and hurting, I could not focus enough to pray. That is when I learned the importance of people praying for me.  I really so believe this is the cause of my recovery. Now when in church, I take it very seriously when prayers for others are requested.”

My faith plays a big part in my life as it guides and directs me on how I live. Not perfectly but progressively. There is a verse in the Bible that I feel describes my life today. It is Joel 2:25. “I will repay you for the years the locusts have eaten…” These were God’s words to the Jews through the prophet Joel. God had punished them for their disobedience and yet, in the midst of it, he offers his grace. God has been showing me his grace all along but now I can see it. He has restored unto me the years the locusts have eaten and continues to do so.

One verse that I have on my white board is Romans 12:12 “ Be joyful in hope, patient in affliction, faithful in prayer.”  Also, my sister put this saying on the board, “Everything will be alright in the end, and if it is not alright, it’s not the end.”  That really spoke to me and I still tear up when I read it.”

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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.

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THE PRICE WE PAY FOR THE HIGH COST OF ANTI-REJECTION DRUGS


dialysis scam cartoonIntroduction by Bob Aronson

Blog by James Myers

 James Myers lives in Indiana and is a member of Facebook’s Organ Transplant Initiative (OTI).  He suffers from End Stage Renal Disease (ESRD) or Kidney failure.  Jim is on dialysis and has been active locally and nationally in the effort to end the 36 month limit on Medicare coverage of anti-rejection drugs.  He is one of the 100,000 kidney patients on the national transplant wjames myersaiting list. Jim is a frequent thoughtful and valuable contributor to the discussions on OTI and we thank him profusely for writing the following blog. 

 

 

ARE DIALYSIS PATIENTS NOT SEEKING KIDNEY TRANSPLANTS BECAUSE ANTI-REJECTION DRUGS COST TOO MUCH?

 By James Myers

I guess the best place to start a blog about kidney disease is to explain what the kidneys do.  This graphic pretty much explains it.What do kidney's do graphic

Everyone is born with two kidneys, but we can survive with one if necessary.  Sometimes called “The Silent Epidemic” Kidney disease affects millions and threatens even more.   600,000 American citizens suffer from ESRD (End Stage Renal Disease) and kidney failure which leaves you with 3 choices: (1) dialysis; (2) a kidney transplant or (3) death. Kidney transplant recipients must take immunosuppressive drugs for the life of their transplant, or they risk losing their new organ. Medicare pays for the transplant and immunosuppressive drugs for 36

medicare logo 2months post-transplant unless beneficiary is Medicare-aged (65) or Medicare-disabled.   The Medicare (ESRD) program pays for dialysis or transplantation for over 600,000 kidney disease patients every year, regardless of age, and has saved millions of lives in the four decades since its enactment. After a transplant, recipients must take immunosuppressive drugs every day for the  rest of his or her life.   Failure to do so significantly increases the risk of organ rejection and therefore, death.   If you are covered by Medicare due to either age or disability and have a transplant your anti-rejection drugs are covered for life.kidney transplant  If you are not covered due to age or disability Medicare will still pay for your kidney transplant, but will only cover anti-rejection drugs for 36 months, then you are on your own.  this policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis which costs more and even more ironically, if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will pay for another transplant and/or dialysis at costs that are many times that of the annual expense of immunosuppressant drugs.  This political slight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Here are some startling facts that make you wonder woman wired for carewhy congress refuses to make a common sense change.   When Medicare coverage ends after 36 months many transplant recipients have difficulty finding other coverage for their immunosuppressive drugs. Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending mmunosuppressive  coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients, and if they return to work they again become taxpayers.

Currently, there is a bill pending in the U.S. senate (S. 323), “The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act,” would extend Medicare Part B coverage for kidney transplant recipients for the purpose of immunosuppressive drugs only. All other Medicare coverage would end 3U.s. senate6 months after the transplant. Beneficiaries would be responsible for the appropriate portion of the Part B premium, as well as applicable deductible and coinsurance requirements. For patients who have another form of health insurance, Medicare would be the secondary payer. The bill also requires that group health plans currently providing coverage of immunosuppressive drugs for kidney transplant recipients maintain this coverage.

There is a corresponding bill in the U.S. House of Representatives (H.R. 1428): Comprehensive Immunosuppressive Drug Coverage for Kidney pay for the good news cartoonTransplant Patients Act.   The Senate version of the bill has been passed out of committee.

Last week, I read a blog I found to be disturbing. Coupled with that, I received a note from one of my friends. The note and the blog indicated that people who were unable to age/disability qualify for Medicare were refusing transplants due to the high costs of the anti-rejection medications. According to Cameron Field and Kidney Buzz, of the 275,000 people who are on dialysis in the United States, only 93,000 chose to be listed on the US Kidney Transplant Waiting List. Two thirds of dialysis patients are not listed, while only one third had chosen to list.

Does the prospect of Medicare coverage for only 36 months and then the average monthly cost of approximately $2100/ month cause people to decline the transplant option? Of course, there may be others reasons to decline; it requires a surgery, the risk of infection, the risk of rejection even if you take the meds, the necessary follow up, and pain, but sources are now saying that it may be possible that up to 34% of dialysis patients are declining transplants due to the cost of anti-rejection meds.  They know they will die without the transplant but they have no choice.

The Dialysis Patient Citizens conducted a survey last year on this issue. 29% said they had other medical conditions. 26% said they were too old. 7% said they were overweight. 6% said their doctors didn’t recommend it. 5% said they were satisfied with dialysis. However, 6% cited financial reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they couldn’t afford the medications. 17% cited personal reasons. Who knows how many in that 17% didn’t want to disclose financial hardship. So according to the DPC’s data, between 13% and 30% aren’t on the list due to financial reasons.   Of the 13,000 transplants performed last year, 6,000 were from living donors, but there are some barriers to living donation that must be overcome, as well.

Nearly everyone knows that while we are born with two kidney’s we can live with just one, so many people choose to donate the second kidney tliving organ donorso a dying patient,.  While the recipients insurance pays the medical costs the donor is often left footing the bill for lost wages while hospitalized and travel to and from the transplant center.   Some states,but not all will provide reimbursement in the form of tax deductions, but nice as they are, they don’t put cash in the pocket of the donor.  The feds have a few grants available but they are grossly underfunded and so many have to foot the bill themselves.  That knowledge may prevent many from offering to be donors. The DPC estimates that cost to reimburse lost wages is about $6,000 for one surgery. When you look at in in terms of Medicare paying for the transplant surgery ($100,000) and for the cost of anti-rejection drugs ($24,000 a year), travel and lost wages for the donor would be a minimal expense and if available would likely increase the number of living donors.

So where do we stand?  If 30% of the people taking dialysis refuse to be listed due to the costs of transplant autoimmune medications, then we are talking about approximately 100,000 people who cannot afford a life-saving transplant.

Everyone on dialysis knows that life expectancy while on that machine is, on average, from 3-5 years. Life expectancy for a transplant, from a living donor is on average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12 years. If you receive a kidney transplant before you are required to begin dialysis then you will live 10 to 15 years longer than if you stayed on dialysis.  So, even though a kidney transplant involves major surgery and requires some risk, in comparison it offers you a longer life.   Most patients who have been on dialysis before their transplant see an amazing difference in their quality of life.

There are two closely related issues here that can be resolved.by one simple action.  The Congress must pass and the President must sign the bill that would provide lifetime coverage of anti-rejection drugs.  It is the only logical, financially responsible and humane solution to a problem that has already caused untold misery and death.

If you find the current law absurd and a waste of money and want to see it changed to save lives and taxpayer dollars then you can help by writing to your congressional representative or U.S. Senator ttake actionoday.  The sample letter below can be used as a guide, but we encourage you to use your own words.

Sample language

Dear ­­­­­____; I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients (for the house, refer to file H.R. 1428.  For the senate refer to file S 323), the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends about $90,000 annually on a dialysis patient and about $25,000 per year for a kidney transplant recipient, after the year of the transplant).

The current bill would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it.

On behalf of thousands of transplant patients, I respectfully request your support of this legislation. Sincerely,

Your name

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource.  You can find your elected representatives and others here http://www.usa.gov/Contact/Elected.shtml or you can use the following links as well

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link. http://www.house.gov/representatives/find/

 

bob minus Jay full shotBob 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.

Kidney Disease — What You Need To Know


kidney cartoon 2

Blog by Bob Aronson

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

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

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

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

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

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

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

Causes of Kidney Disease

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

Other conditions that affect the kidneys are:

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

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

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

Avoiding Kidney Disease

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

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

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

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

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

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

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

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

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

How it Feels to Have Kidney Disease

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

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

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

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

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

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

If Dialysis is Ordered

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

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

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

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

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

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

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

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

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

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

Risk Factors

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

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

 Got questions?  Many answers can be found here.

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

 A Kidney Transplant

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

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

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

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

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

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

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

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

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

Medicarecms logo

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

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

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

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

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

The Jay Robare Story

Waiting for a Kidney

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

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

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

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

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

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

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

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

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

The Kidney Transplant

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

During a kidney transplant

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

During the surgery:

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

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

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

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

The Future

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

How Alcohol Can Wreck Your Body


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

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

6pm One Unit: It’s been a long day…

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

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

8pm Five Units: Whose round is it then?

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

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

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

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

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

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

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

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

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

The morning after: Can you please just shut up…

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

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

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

One year on: Where did it all go wrong?

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Top Contributors, 2011-2012

Contributor

Amount

Pfizer   Inc

                $1,287,136

Amgen   Inc

                 $1,017,312

Abbott   Laboratories

                 $868,480

Stryker   Corp

                 $819,464

AstraZeneca   PLC

                 $794,863

Merck   & Co

                 $763,935

Johnson   & Johnson

                 $716,541

Upsher-Smith   Laboratories

                 $612,900

Eli   Lilly & Co

                 $571,179

McKesson   Corp

                 $555,125

4Life Research

                 $539,950

EOE   Inc

                 $525,000

GlaxoSmithKline

                 $493,472

Masimo   Corp

                 $469,468

AmerisourceBergen   Corp

                 $461,877

Roche   Holdings

                 $458,940

Novartis   AG

                 $454,089

Harris   Frc

                 $351,000

Bayer   AG

                 $341,715

Sanofi

                 $299,526

Contributions to Democrats  Republicans  Outside Spending Groups

Top Recipients, 2011-2012

Candidate

Office

Amount

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

Senate

     $327,627
Upton, Fred (R-MI)

House

     $253,615
Brown, Scott (R-MA)

Senate

     $246,953

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

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

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

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

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

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

 

 

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

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

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

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

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

To Remember Me — A Donor’s Request


To Remember Me

By Robert Noel Test (1926-1994)

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital; busily occupied with the living and the dying.

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.

  • Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
  • Give my heart to a person whose own heart has caused nothing but endless days of pain.
  • Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
  • Give my kidneys to the one who depends on a machine to exist from week to week.
  • Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
  • Explore every corner of my brain.
  • Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
  • Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
  • If you must bury something, let it be my faults, my weakness and all prejudice against my fellow man….
  • If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

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

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

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

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

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

 

Alcohol and Drugs The Organ and Child Killers


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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