Bob Aronson

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

In Inspirational stories on April 12, 2014 at 10:53 AM

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.

50 Inspirational Quotes About Kindness, Courage and Compassion

In Inspiration on April 5, 2014 at 3:00 AM

Introduction by Bob Aronson

(Attribution is given with each quote)

Scartoonometimes the saying the right thing in the right tone at the right time can have a powerful impact, but often search as we may, we cannot find the right words within us.  That is when the search area must be expanded to those who may have had similar experiences, but also the time to weigh and articulate their thoughts — thoughts that clearly express your feelings.  While ironic, it is also a fact of life that often those most quoted are those who quote most often.  

There is no harm done in quoting others to help you make your point,.  There is only good to be found when the well considered words of another help you to find peace and give comfort.  It is in that spirit that we offer this collection of inspirational quotes about Kindness, Courage and Compassion.  They are among my favorites.  I hope you like them, too.

 

Be kind, for everyone you meet is fighting a harder battle.”
― Plato

 

“Dare to Be

When a new day begins, dare to smile gratefully.

When there is darkness, dare to be the first to shine a light.

When there is injustice, dare to be the first to condemn it.

When something seems difficult, dare to do it anyway.

When life seems to beat you down, dare to fight back.

When there seems to be no hope, dare to find some.

When you’re feeling tired, dare to keep going.

When times are tough, dare to be tougher.Dare to be different

When love hurts you, dare to love again.

When someone is hurting, dare to help them heal.

When another is lost, dare to help them find the way.

When a friend falls, dare to be the first to extend a hand.

When you cross paths with another, dare to make them smile.

When you feel great, dare to help someone else feel great too.

When the day has ended, dare to feel as you’ve done your best.

Dare to be the best you can –At all times, Dare to be!”

― Steve MaraboliLife, the Truth, and Being Free

 

 “If we have no peace, it is because we have forgotten that we belong to each other.” ― Mother Teresa

 

giving“No one has ever become poor by giving.” ― Anne Frankdiary of Anne Frank

 

 Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” ― Dalai Lama XIVThe Art of Happiness

 

“for there is nothing heavier than compassion. Not even one’s own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes.” ― Milan KunderaThe Unbearable Lightness of Being

 

“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”  ― Elizabeth GilbertEat, Pray, Love: One Woman’s Search for Everything Across Italy, India and Indonesia

 

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” ― Leo Buscaglia

 

“Remember, if you ever need a helping hand, it’s at the end of your arm, as you get older, remember you have another hand: The first is to help yourself, the second is to help others.” ― Sam Levenson

 

 

Courage is not the absence of fear, but rather the judgement that
something else is more important than fear.”   Ambrose Redmoon

 

“A ship is safe in harbor, but that’s not what ships are for.”  William G.T. Shedd

 

“Life shrinks or expands in proportion to one’s courage.”   Anaïs Nin

 

“Courage is resistance to fear, mastery of fear – not absence of fear.”   Mark Twain

 

“Freedom lies in being bold.”   Robert Frost

 

“For me, I am driven by two main philosophies: know more today about the world than I knew yesterday and lessen the suffering of others. You’d be surprised how far that gets you.”  ― Neil deGrasse Tyson

 

“We must learn to regard people less in the light of what they do or omit to do, and more in the light of what they suffer.” ― Dietrich BonhoefferLetters and Papers from Prison

 

 “The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud — the obstacles of life and its suffering. … The mud speaks of the common ground that humans share, no matterlotus what our stations in life. … Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ”  ― Goldie Hawn

 

“How much can we ever know about the love and pain in another heart? How much can we hope to understand those who have suffered deeper anguish, greater deprivation, and more crushing disappointments than we ourselves have known?” ― Orhan PamukSnow

 

“When I give food to the poor, they call me a saint. When I ask why the poor have no food, they call me a communist.” ― Hélder CâmaraDom Helder Camara: Essential Writings

 

 “Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy.” ― Dean Koontz

 

“True compassion is more than flinging a coin to a beggar; it comes to see that an edifice which produces beggars needs restructuring. ” ― Martin Luther King Jr.

 

“Love is not patronizing and charity isn’t about pity, it is about love. Charity and love are the same — with charity you give love, so don’t just give money but reach out your hand instead.”  ― Mother Teresa

 

“You have not lived today until you have done something for someone who can never repay you.”  ― John Bunyan

 

Let us not underestimate how hard it is to be compassionate. Compassion is hard because it requires the inner disposition to go with others to place where they are weak, vulnerable, lonely, and broken. But this is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or finding a quick cure for it.” ― Henri J.M. Nouwen

 

“The thought manifests the word

The word manifests the deed;

The deed develops into habit;
And habit hardens into character;
So watch the thought and its ways with care,
And let them spring forth from love
Born out of compassion for all beings.
As the shadow follows the body, as we think, so we become.”
― Juan Mascaró

 

  Do not oppress the widow, the fatherless, the sojourner,  or the poor, and  let none of you devise evil against another in your heart.  echariah 7:10

 

“The only time you look in your neighbor’s bowl is to make sure that they have enough. You don’t look in your neighbor’s bowl to see if you have as much as them.”  ― Louis C.K.

 

“Protect your enthusiasm from the negativity and fear of others. Never decide to do nothing just because you can only do little. Do what you can. You would be surprised at what “little” acts have done for our world.”  ― Steve Maraboli

 

When asked what was the greatest commandment, Jesus responded that it is to love God with all our heart, mind and strength. But He added that the second commandment “is like it: ‘Love your neighbor as yourself’” (Matthew 22:34-40). The Pharisee had asked Him which single command of God is the greatest, but Jesus provided two, stating not only what we are to do, but also how to do it. To love our neighbor as ourselves is the natural result of our loving devotion toward God.

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“The nature of compassion isn’t coming to terms with your own suffering and applying it to others: It’s knowing that other folks around you suffer and, no matter what happens to you, no matter how lucky or unlucky you are, they keep suffering. And if you can do something about that, then you do it, and you do it without whining or waving your own fuckin’ cross for the world to see. You do it because it’s the right thing to do.”  ― John ConnollyDark Hollow

 

“Be kind to people whether they deserve your kindness or not. If your kindness reaches the deserving good for you if your kindness reaches the undeserving take joy in your compassion.”
― James FadimanEssential Sufism

 

“[The] insistence on the absolutely indiscriminate nature of compassion within the Kingdom is the dominant perspective of almost all of Jesus’ teaching.
What is indiscriminate compassion? ‘Take a look at a rose. Is is possible for the rose to say, “I’ll compassionoffer my fragrance to good people and withhold it from bad people”? Or can you imagine a lamp that withholds its rays from a wicked person who seeks to walk in its light? It could do that only be ceasing to be a lamp. And observe how helplessly and indiscriminately a tree gives its shade to everyone, good and bad, young and old, high and low; to animals and humans and every living creature — even to the one who seeks to cut it down. This is the first quality of compassion — its indiscriminate character.’ (Anthony DeMello, The Way to Love)…

 

 

What makes the Kingdom come is heartfelt compassion: a way of tenderness that knows no frontiers, no labels, no compartmentalizing, and no sectarian divisions.” ― Brennan ManningAbba’s Child: The Cry of the Heart for Intimate Belonging

 

“These things will destroy the human race: politics without principle, progress without compassion, wealth without work, learning without silence, religion without fearlessness, and worship without awareness.”  ― Anthony de Mello

 

“When morality comes up against profit, it is seldom that profit loses.” ― Shirley Chisholm

 

Enlightened leadership is spiritual if we understand spirituality not as some kind of religiou
Leaderships dogma or ideology but as the domain of awareness where we experience values like truth, goodness, beauty, love and compassion, and also intuition, creativity, insight and focused attention. Deepak Chopra

 

Never apologize for showing feeling, my friend. Remember that when you do so, you apologize for truth.   Benjamin Disraeli, in Contarini Fleming :

 

A good character is the best tombstone. Those who loved you and were helped by you will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble. ~Charles H. Spurgeon

 

Never miss an opportunity to make others happy, even if you have to leave them alone in order to do it. ~Author Unknown

 

Don’t wait for people to be friendly, show them how. ~Author Unknown

 

You cannot do a kindness too soon, for you never know how soon it will be too late. ~Ralph Waldo Emerson

 

There’s a lot of not caring that goes under the name of minding your own business. ~Robert Brault, rbrault.blogspot.com

 

The only people with whom you should try to get even are those who have helped you. ~John E. Southard


bob magic kingdom
Bob 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.

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

In Bobservations, Kidney Amto-rejectiom drugs on March 29, 2014 at 8:59 PM

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.

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