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From the Bottom of My Donor’s Heart. My 20 Year Transplant Journey


heart full of love

Introduction

Overall my transplant has been a very positive experience, but that does not suggest that there weren’t some difficulties and challenges along the way. There were several and they were discouraging, but we kept forging ahead because the alternative was much worse. Now some 20 years post diagnosis. I am alive, I am enjoying life and I am the most grateful recipient on earth. Despite all the setbacks, the bad moments, the complications, I would not hesitate to make the same decision all over again. Thank you Mayo, donor family, my wife and family and the many friends I had and have collected since I got a new heart.

This is an accurate although abbreviated record of my journey. Yours may be totally different and likely will be. I have posted it because of a good many requests to do so. I hope it is helpful to someone. I also hope you will notice that I found some of the experience to be downright funny and I included them because seeing the humor in life’s challenges is important to your recovery. Don’t ever lose your sense of humor; in fact you should aggressively look for it in every situation. It will make your life so much easier to live.

Bob Aronson, heart recipient August 21, 2007 Mayo Clinic, Jacksonville, Florida.

 

The Beginning. An Earthquake Swallows You Whole

Getting an organ transplant is an experience that few ever have. From the time you first learn that you need one, until a good while after you have one, the ride is not unlike the wildest, highest, steepest, fastest, scariest roller earthquakecoaster ride you can imagine. It is like standing in the street when an earthquake hits and the fissure in the pavement runs right between your feet. You get the same feeling you did in that recurring nightmare where no matter how fast you run, your legs feel like rubber and you keep falling, but each time you do it is harder to get up and that something that is chasing you is getting closer. You know you are going to die.

Emotions can range from terror, to giddiness, to depression, anxiety, guilt, anger and every other imaginable high, low or even fantasy. An organ transplant will introduce you to feelings you did not know you had and to realities you did not know existed. Most importantly it will allow you to see your own humanity; your strengths, weaknesses vulnerabilities, fears and inadequacies. In other words, you will get to know a side of yourself that you didn’t know existed.

All of us know that someday we will cease to exist, but no one likes talking if something happensabout it. Insurance companies like to say, “If something happens to you,” and we all know they don’t mean winning the lottery or getting your very own magic Genii who will pop out of a jar and grant you anything you want. “If something happens to you” means not if, but when you die. It means dead, lifeless, no heartbeat, no breathing, no pulse – DEAD!

When you are told that an organ is failing, you are being told that the last option available to keep you alive is a transplant. You are dying. That is information with which it is hard to come to grips, and those of us who have had transplants have all heard that message loud and clear, it is inevitable. It is a sad fact, but everyone on the transplant list is dying.

I’m sure the death message is never delivered in the same manner twice because the circumstances that lead up to it are all different. The very first recognition that something is wrong is usually met with disbelief. “It’s probably nothing, maybe a false positive, it can’t be organ failure.”

In my case it was in mid-1995 when I left the office late one night after a long day. I’m an asthmatic and I had struggled for air all day. I could hardly wait it for it to end but I had a client until 9 PM. When she left, I waited until the elevator doors closed, turned out the lights, locked the door and took an elevator down six floors to the parking ramp. I had arrived at the office late in the day because of meeting and had to park at the very back of the ramp, a good block from the elevator. Most of the cars were gone now and there wasn’t a living, breathing soul to be seen. I could see my car in the distance, but it may as well have been in the next county. My breathing was so labored I doubted I could make it that far, but I had to try.

I am one of those guys who makes a decision and never looks back, so I forged ahead. I was going to make it to my car no matter what. I thought that if I walked slowly I man down in dark rampwouldn’t use as much air so that’s what I did, but breathing was getting more and more difficult and my rescue inhaler seemed to have no effect. I chalked it up to a defective device and pushed on while carrying a full briefcase. I leaned on cars, support columns and sign posts, but stopped often and fell twice when my legs gave way under me.

By the time I got to my car my suit pants were torn from falling, my hands were scraped and bloodied from using them to break my falls and I was soaking wet from perspiration. With great effort I made it into the car, turned on the AC and just sat there hoping the rest would restore my ability to breathe. It didn’t. I called home to alert my wife that I was in distress and would pick her up on the way to a nearby community hospital ER. She said I should go to a bigger hospital, but I knew the bigger facility would be crowded and the wait would be a long one so we went to the small one.  She was right and i was wrong. here’s what happened.

It was a small hospital in Hastings,Minnesota and there were no patients waiting in the ER lobby emergency entrancewhen I stumbled to the desk and gasped, “I’m having an asthma attack and need a shot of epinephrine,” and collapsed on a chair next to the nurse.

She took my vitals, listened to my chest, looked at my eyes and fingernails, poked around my ankles and said, “This is no asthma attack.” Somehow she alerted a crash team which appeared in microseconds. They brought with them a gurney upon which they cekgarefully placed me and removed my tie, shirt and t-shirt while wheeling me into an ER exam cubicle. Then, someone else came along and stuck some leads on my chest, sides, legs and arms and wired me to a machine. Another person started an IV. A portable X-ray machine materialized, someone gave me a nitroglycerine pill to place under my tongue but still no shot of epinephrine and I was getting angry. I knew what to do. “Why didn’t they know? I wondered”

A doctor appeared, examined me and ignored my repeated requests for epinephrine. Finally he said, “Mr. Aronson this is not an asthma attack, even though you think it is. It’s your heart.” He left the room to have a conversation in the hall with a couple of other people and then returned to say, “Mr. Aronson, we have determined that your condition could best be handled by a racing ambulancehospital that has cardiologists on duty and specializes in situations just like this. We are sending you there by ambulance so you will get the best and most immediate care possible,” and they wheeled me out to my ride.

Too much was happening too fast. I was totally confused. “This is asthma, for heaven’s sake,” I thought. I just couldn’t wrap my mind around this heart stuff. I was 56 years old and thought I was in very good health. I didn’t drink or smoke and was in fairly good physical condition. united hospitalI just couldn’t figure out why they thought it was my heart when I knew it was asthma. The ride to United Hospital in St. Paul, Minnesota took about 20 minutes, and I was rushed into their heart unit. More wires, more machines, more activity, blood drawn, questions asked and injections given.

Another technician appeared with an echocardiogram machine. He placed more leads on my body, some cold gel and began moving a wand around the left side of my chest. In the meantime my breathing was improving.

I could see my heart on the echo monitor and hear the “gulp, swish, swish, gechogramulp” of the machine. All the while the medical team was explaining every detail of what they were doing and I heard none of it. “It’s an asthma attack,” I kept thinking. And then I lost consciousness.

I awakened the next morning in a hospital room with my family surrounding me. Everyone was solemn and one of my daughters was crying. A man walked in, he looked like he just stepped off the cover of Gentleman’s Quarterly. “I’m Dr. Thomas Johnson, a cardiologist,” he said. “It appears as though you have a very serious heart condition called Cardiomyopathy. We are going to run some further tests, but you may need a heart transplant.”

I thought, “Boy, this guy doesn’t mince words – a heart transplant? I vaguely remembered being on the air and reporting on the story when Dr. Christian Barnaard performed the first ever in 1967 in a South African hospital. I remember thinking, “Wow, what a development. It will help a whole lot of people someday,” never considering for a moment that I might be one of them. The diagnosis was official now, I had Idiopathic, Dilated Cardiomyopathy. That means I had heart failure from no apparent cause.

It all came together at that moment. The great truth that I had continually denied and avoided was now perfectly clear. The feeling was like that you experience when a monstrous thunder clap or earthquake rattles your bones. It was like lightning bolts flashed out of the clouds, thunder rumbled louder than I could bear and the realization that asthma had nothing to do with my condition that shook my foundation. I was in serious trouble. I felt a mixture of shock, anger, terror, doubt and disbelief. That was my introduction to a process that would take 12 more years before I got a new heart.

The Disease Progresses

A measure of the health of your heart is its ejection fraction (EF). It is how ejection fraction 2much blood is pumped out of the heart with each beat. On average we pump out about 60-70 percent. My EF was 25. When it gets too low that means that the heart has to grow larger to hold the retained blood, but it’s a gradual process. For a long while I felt OK. I went about my work and with the help of medication performed as I always had. I was a communication consultant helping business executives with presentations, testimony, personal communication and media interviews, and was always upbeat and energetic. Often I was hired as a keynote speaker at conventions. I never stood behind a lectern, but rather walked around the stage, invading people’s space and getting them involved. Slowly that became harder to do.

In 1996, a year later, I started to feel a little fatigue and while still energetic I had lost a step or two, but it was barely noticeable. That same year Avis, my wife of 33 years was diagnosed with lung cancer. She fought hard and for a while it looked like she had it beat but in 1998 she succumbed to that horrible disease and I went through the motions of living. My fear of the slow disability that would be overtaking me was exacerbated by the grief I felt over losing Avis. Being alone after 35 years of marriage is almost unbearable. She was special and losing her left a very large void in my heart and my life.

I stumbled on in a continually weakening condition until 2000 when I met and married my current wife Robin. I told her about my condition and the fact that there were not enough donor organs for the number of patients who needed them, but she was undaunted and married me anyway. As it turned out she always had more faith than I did that I would get a heart and be just fine, but I was now about five years post diagnosis and my EF had dipped to 20 and I lost another step or two. As I walked the stage in my presentations I started to become more breathless so I contracted my movement circle. It was about this same time when I fainted while driving into a parking place. That development caused my physicians to implant a defibrillator in my chest to guard me against sudden cardiac arrest.

At 9 years my EF was between 15 and 20 and it had become very difficult to be as active as I had been so I made sure that I had a bar stool when I spoke that would be placed about center stage between the lectern and the edge. I could still leave the lectern and give the image of energy but I could kind of lean on that stool. Obviously the heart failure was getting worse, but not bad enough to put me on a transplant list.

Finally at 11 years with an EF of 10 to 15 I quit doing keynote speeches and only accepted small group coaching sessions where I stood on occasion but mostly sat on a stool at the front of the room, and then one day, I couldn’t muster the energy to get through a session unless I sat in a chair.

It was time. We decided to retire and move from Minneapolis, Minnesota to Jacksonville, Florida for two reasons. One being that it was my wife’s Mayo jaxhometown and her family was there and the second was that one of three Mayo Clinics was located there. I learned they had a phenomenal record of success in getting organs and in the survival rates of transplant recipients.

I made the necessary appointments at Mayo and went through a battery of tests for several days. Finally I was told that my case would be presented to the hospital transplant committee for approval to be placed in the national transplant list. Sure enough I was approved and listed and promptly forgot about it. Everything I had read suggested that people on the list waited a long time and that many never got an organ. I was of the belief that at age 68 I was probably too old and not sick enough. After all I was up and around and not even hospitalized.

By now my EF was down to 10 and my heart was getting seriously enlarged. I was on my second implanted defibrillator and had trouble walking from the den to the bathroom without stopping to rest. Then one morning the phone rang, I answered and confirmed my identity and my transplant cardiologist from Mayo said, “I may have a heart for you.”

I could not believe my ears. I had only been listed 13 days earlier.

“Pack a bag and come to the hospital,” Dr. Hosenpud said, “and we’ll get things underway.” In my mind “pack a bag” meant, “Get your butt over here right away, break the speed limit, we’re all waiting for you, hurry, hurry, hurry.”

I told Robin about the call and we rushed out of the house to make the 45 minute cross town drive to Mayo. It only took 30 minutes. For me the world at this point was moving at near the speed of light. My always composed and realistic wife Robin had no delusions. She expected Mayo to be as reserved and professional as they always were. My mind was simply not that organized. I perceived us screeching to a stop at the hospital where a team of the world’s greatest physicians, nurses and technicians would be in medical staff waitingthe lobby waiting for us. My mind’s eye saw us running into the hospital surrounded by people in surgical garb and lab coats who were all barking orders while the hospital PA system was calling for more doctors, nurses and technicians. I fully expected the PA system to be saying, “He’s here; the guy who is getting a new heart is here.” I envisioned being thrown on a gurney, stripped of my clothing and rolled at high speed to an operating room where the finest doctors on the planet were assembled next to an ice-covered beating heart in a stainless steel pan.

Tben caseyhe Doctors looked like Ben Casey Dr. Zorba and Patricia Neal (all  stars of the past).The scenario in my mind called for absolute pandemonium. I was patricia nealthat excited so they must be, too. I needed pandemonium — to have it meant this event was the show of shows, the biggest medical story of the century.

I got anything but. I walked in, stood in a very orderly line and when I was waved forward said to the receptionist, “I’m Bob Aronson and I’ve just been called by Dr. Hosenpud to come in for a heart transplant. “Ok,” I mayo receptionICUthought. “Cue the marching band and a frenzied atmosphere.” But nothing of the sort happened.

She looked up at me and smiled, looked down at her computer screen and said, “Someone will be out to get you shortly, Mr. Aronson, please have a seat.” There were scores of people in the waiting room and not a single one looked up when I entered. They all sat in perfect silence waiting their turn and ignoring my big event. For all I knew every one of them was here for a transplant as well.

“Have a seat?” I thought. “Don’t they know why I’ m here, who I am? For God’s sake there’s a heart on ice in there beating away, waiting for me and she wants me to sit?” I had considered this day often and each time I did there was pandemonium. I wanted pandemonium, I deserved pandemonium, I needed pandemonium, I craved it, but alas it never happened.

A very nice woman came out in about fifteen minutes and quietly said, “Come with me, Mr. Aronson,” and we slowly, quietly walked behind the reception desk into the surgical area, where I got on a gurney under my own power, put on a gown and was surrounded by very pleasant, highly professional staff who proceeded to quietly and efficiently “prep” me for the surgery.

Finally they wheeled me to a surgical suite where the strains of Beethoven could be heard on the speaker system as the anesthesiologist told me what his role was and about the anesthesia I would be getting. Then, he said he would give me something to “relax” me. It sure did.

I awakened in recovery the next day to the sound of Robin saying, “You have a new heart and you’re doing well.”

Recovery. The Days After

When I awakened again, I didn’t know where I was. I felt like I was duct taped to the bed. My head hurt. I was nauseous and confused. I vaguely remember several doctors entering the room.cardiac icu They asked about pain levels and said they were going to remove my dressings. One of them leaned over me crossed his arms so his right hand was on my right shoulder and his left on my left shoulder, Then there was the sound made by industrial strength Velcro makes when being torn apart rapidly–“Riiiiiiip” and he said, “You Ok?” I don’t remember my response because I lost consciousness again.

My next awakening was in Cardiac Intensive care. I think I was alone in my own cubicle. There was a nurse there and I was so thirsty my mouth felt like hot sandpaper. I asked for water. The nurse said, “You can have ice chips once an hour and she handed me a glass of them.

They lasted as long as they would had you poured them on a downtown Miami sidewalk at noon in the middle of August and I was still thirsty. cup of iceMore,” I said.

“No,” she said, “Not for another hour.”

I begged and pleaded to no avail. So I focused on the wall clock. “57 minutes to go.” It was the longest 57 minutes of my life, but right on schedule she was there with the small glass of ice chips. I was still parched and the chips gave only momentary relief, so I begged again, but failed to penetrate her compassion shield. I think I called her “an ice Nazi.” She didn’t laugh, but it didn’t sway her either. I don’t know how long that went on, but she never relented and I will always remember being the thirstiest I have ever been.

I do not recall how long I was in ICU, but I do remember being moved to my own private room. When I entered the hospital I was suffering from horrible heartburn and I was still bothered by it after surgery so I asked them to place me in the recliner chair in the room. They did and I settled in for the duration. They never cured the heartburn so I never got in bed. I’m probably one of the few transplant patients who spent all my time in the hospital room, some 9 days, without ever getting into bed. The housekeeping staff seemed to like that. One less bed to change.

My Mayo Transplant was done in St. Luke’s Hospital in Jacksonville, Florida while the Mayo hospital was being constructed. St. Luke’s was nice, with an Rasputenincredible, wonderful staff, but it was old. In my room there were two chairs, one was the recliner in which I sat. I think it was built in 1915 in Tsarist Russia for use on the enemies of the “Mad Monk” Grigori Rasputin. You had to be a contortionist to adjust the recline angle of the chair and no one who has had their chest cavity carved open has that ability.

That chair was bad enough, but the other one was clearly meant as an alternative to water boarding. It was a straight backed heavy oak, ladder-back chair. It was designed to make people confess, not to be comfortable and it was what Robin had to sit on, day after day. I don’t know what happened to it since then, but I would bet it is indestructible, probably won’t even burn.

During my stay there, I was constantly wheeled to different tests including heart biopsies, more echograms, X-ray’s and other imaging, pulmonary exams and treatments and meds adjustments. I was weak, still had heartburn, was not eating very much and generally didn’t feel real good, but finally was sent home with instructions on how to recover there.

Post-transplant depression is quite common for a host of reasons, one in particular is guilt. It is not unusual for a transplant recipient to feel terrible because “someone had to die, in order that I could live.” That statement supposes that the organ recipient bears some responsibility for the death of the donor. When you consider it, the thought is unreal and illogical. While I understand that sentiment I respectfully disagree. Here’s my take on the issue. No one HAD to die and when they did, it was not so you could live. That person’s life had ended. They died sadly, because it was their time to go. Prior to that he or she voluntarily signed up to be an organ donor. Then, for whatever reason they died. When they did UNOS (The United Network for Organ Sharing) began a search to look for a match for the organs of the deceased person. You are a number on their list; they don’t have your name.

No one HAD to die so you could get a transplant, but someone did die and you were chosen to get the organ. It’s not as though your donor was called in to the central office and told, “Hey George, today is your turn, We need your heart, kidneys and pancreas. We’ll be putting you down at 3 PM so say your goodbyes.” It just doesn’t work that way. George, for whatever reason, lost his life that day and because he was a generous, compassionate person he had arranged for someone to get his organs upon his passing. Someone, anyone. It is a gift to whoever needs it most. Your donor made that decision, no one else. Be grateful, yes, but guilt has no place in the equation. you are not responsible for your donor’s death.

I seemed to be doing better at home until I awakened one morning with a terrible heaviness in my chest. Breathing was difficult and I was coughing. A call to my transplant coordinator resulted in being instructed to go to the Emergency Room right away. It wasn’t long after I arrived and was examined that I was informed that I had pneumonia and the pulmonologist said he was very worried about my lungs. After nine more days in the hospital and some heavy duty therapy I began to recover and was released. deprressionWhen I got home I retreated to the den in my favorite recliner, turned on the TV and sunk into terrible depression, a condition that didn’t end soon or easily.

 

Like all transplant patients I was not allowed to drive for a while so at least twice a week Robin had to drive me to Mayo for checkups and treatments. I went because I had to. There was no joy in any of it including the cardiac rehab program, which was well-run, but well beyond my ability to enjoy. This was my lowest point ever. I have since learned that post-transplant depression is very common and yes, I was treated for it, but it is the kind of illness that doesn’t respond immediately to treatment, so I stayed in that state for several months while we experimented with anti-depressants.

At the same time, I was stricken with incredible shoulder, neck, arm and wrist pain. I knew I had the beginnings of osteoarthritis, but I didn’t know it could be this painful. Additionally, I was told that when they perform a heart transplant your arms are placed over your head at a strange angle so the surgeon has complete access to the chest cavity. It is not unusual, I’m told, for some patients to suffer shoulder pain as a result. I was one of those patients. For weeks I suffered from pain so horrible I could not sleep or eat and while the Mayo docs made every effort to help, it took time to find the appropriate method of addressing it. They finally did, but that episode had me descend into even greater depths of depression.

Slowly, very slowly I regained my appetite, my mood brightened and the pain lifted, but it was almost a two year ordeal in which I went from 225 pounds to 150, a 75 pound loss due to having no interest in food and a stomach that wouldn’t keep much down. I think I lived on puddings, gelatins and soft fruits. The only thing that kept me going was a newfound interest called Social Media.

Robin was my salvation in all of this. She not only took care of me at home, but made sure I made all my medical  appointments, had the right meds and ran two businesses out of our home at the same time. She is steady as a rock, never panics and is always up-beat and encouraging. Being a caregiver is very hard work. She did it and to some degree still does it without complaint. I am a most fortunate man. I love her with a special intensity and am blessed that she feels the same about me. She is a fantastic woman.

facebook wordpress
In November of 2007, two months after my transplant I got a call from Lee Aase the social media guru for Mayo Clinic in Rochester, Minnesota. I knew Lee professionally and was flattered when he called to ask if I’d be interested in starting a Facebook group and a blog. I said, “Huh,” and “huh.” I had no idea what either were. Lee is a patient man and took the time to give me a crash course and that’s when today’s over 4,200 member Facebook group Organ transplant Initiative was founded along with Bob’s Newheart blogs. Lee came up with the Newheart name which I still think is mighty clever.

The miracle of the social media for me is that it gave me some new responsibilities, which I desperately needed. My nature is such that if I take on a task I don’t know how to give it anything but my very best. OTI and the Newheart blogs gave me a new reason to get up in the morning. Each day I had something new to do, blogs to write, topics to introduce on Facebook and something to keep my mind off of my miseries. Lee’s call may have saved my sanity.

The Facebook group grew rapidly and the members were incredibly supportive of one another and of me. Since I started blogging I have posted over 260 columns on topics around transplantation/donation and related issues, which is just about any medical story. While some of them were provided by guest bloggers I researched and wrote about 90 percent of them.

Robin is an artist and we sell her colorful anodized aluminum and polymer clay jewelry at art fairs around the east and Midwest and we travel to those sRobin and dogshows with our two dogs in our RV to the tune of about 20,000 miles a year. We love the life, enjoy what we do and have no plans to quit anytime soon.

Her art business required furnishings for her trobin's boothent and because I have always liked doing woodwork I began to build a shop and make shelving, pedestals, picture frames, tables and wooden jewelry boxes. I’m no expert woodworker, but it is a hobby I really enjoy and intend to keep doing it as long as I can. I am busier today than I was when I was working, but now I answer to no one but I and work only on things that give me great satisfaction.

I am convinced that the road to good health and happiness is made easier if you can stay busy doing things you love doing.

Readers – the only advice I can give you is this. Never give up, never. Be confident of a bright future because if you think otherwise you may be paving your own road to hell. Find something you really like doing, enjoy your new life, love your friends and loved ones with every ounce of your soul and as Spock said, “Live long and prosper.” You’re worth it and you deserve it!

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bobBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

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


By Bob Aronson

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

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

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

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

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

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

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

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

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

Alcohol can damage or destroy liver cells.

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

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

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

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

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

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

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

The Liver Transplant

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

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

Essential Information For The Transplant Patient

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

Risks of the procedure

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

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

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

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

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

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

Before the procedure

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

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

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

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

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

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

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

The following steps will precede the transplant:

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

During the procedure

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

Generally, a liver transplant follows this process:

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

After the procedure In the hospital

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

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

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

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

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

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

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

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

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

At home

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

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

Notify your doctor to report any of the following:

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

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

What is done to prevent rejection?

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

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

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

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

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

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

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

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

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

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

Insurance information

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

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

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

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

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

Other expenses

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

Financial Aid

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

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

Do You Believe In Miracles — Medical Miracles?


 Introduction by Bob Aronson

blackboard cartoon

Since Bob’s Newheart began publishing on WordPress over seven years ago, we have tried to offer encouragement, sound medical information, choices for healthy living,  news of what’s to come and  as much inspiration as possible for those who suffer from debilitating diseases.   As a heart transplant recipient I know what its like to feel desperate and without hope.  I also know there is always hope,  always.

Dr. Priscilla Diffie-Couch and her sister Dawn Anita Plumlee have been contributors to our inspiration series in the past.  Today Dr. Diffie-Couch returns with the amazing story of how she suvived what could have been — what should have been–
a deadly cancer. 

MY PERSONAL MEDICAL MIRACLE

Priscilla Diffie-Couch ED.D.

Friday morning I awake relieved.  My doctor has pronounced my ulcer completely healed.  I return from my errands humming happily and stop to check my message machine.  Why has my doctor’s office tried three times to reach me?  I already know the good news.  Now I have my doctor on the phone and listen to his strange tight voice. phone answering machine

“We need to repeat your biopsy.  I’m afraid it looks suspicious.”

“Suspicious?”  Characters in murder mysteries look suspicious.  People lurking in dark alleys look suspicious.  My biopsy looks suspicious?

“How suspicious?” I ask cautiously.

“Highly suspicious?”

“You mean, as in malignant?”

“Well…yes.”

“So are we talking cancer in my stomach?”

“Yes.  I’m afraid so.”

“The prognosis if that’s true?”

“Not very good, I’m afraid.”

He’s afraid?  I’m trembling with fear.  We settle the details for another more extensive biopsy.  I call my husband Mickey.  Probably a mix-up, we agree–someone else’s tissue.  My friend Donna, who happens to be a pathologist calls.  Her voice too is strained.  Having reviewed my biopsy, she and her pathologist husband Dee appear after work with two bottles of their best wine.  We toast to a “mistake in the lab.”  And feel for the real owner of the suspicious biopsy tissue because the samples they both examined were literally cluttered with countless cancer cells.

stomach cancer factsSaturday begins with a long close silent hug.  If the biopsy tissue truly is mine and I have cancer, we need to be informed.  We head for the medical books in the huge used book store.  We go from there to the library.  We read in silence–page after page of gloom and doom. It is a deadly disease.  Statistics point to a 10% survival rate for victims of stomach cancer. Pictures of my grieving family flash through my mind as the tears well up in my eyes.

Another sustained quiet hug when we get home.  I break away suddenly and declare that the statistics are on our side. If ten percent of the people beat this cancer, that will include me, so my chances then become one hundred percent.  That is how we will present the news to family.  That is optimistic but believable, given my general good health and fighting spirit.

Sunday Mickey calls family members.  My son Jeff and his wife Diana arrive shortly to share our outlook of a hundred percent chance of survival.  My sister tells me to get a copy of Bernie Siegel’s Love, Medicine and Miracles, which I vow to do immediately.  Later that evening Mickey and easily win our mixed doubles tennis match.  I begin reading the book my sister suggested.  The seeds for positive thinking are being planted as I do.

On Monday I undergo what is called a D & C for a feminine bleeding problem also related to cancer and set a tentative schedule for full removal of my stomach on Thursday, should these suspicious cancer cells truly be mine.  They are.  Donna and Dee deliver that dreaded news.  They know the grim outlook for stomach cancer.  Shattering silence.  I say something funny.  I must have.  We all burst out laughing.  I can feel a change in the climate.  I can see they are now on board as believers in my chances of survival.

On Tuesday I spell out my situation to my friend Sharon, who recently sold her share in Sound Warehouse for $46 million dollars.  Upon arrival at my doorstep, she declares with authority that she is “here to insure that I have the best medical care that money can buy.”  The doorbell rings again.  Cissy. Nancy.  Charlene.  Margie.  All bearing gifts–elegant gowns.  I may end up without a stomach but I will be the most beautifully dressed patient in the cancer ward.  We laugh at my concern about bleeding all over the operating table since the D & C didn’t arrest my flow.  We women are commonly such vain creatures.  But good friends like these are rare indeed.

The healing process begins the moment the diagnosis is confirmed with a third biopsy.  As I look at Mickey, his shoulders shaking with stifled sobs—a weak moment of looking ahead at life without me—he apologies.  Suddenly my role in this ordeal becomes clear.

When faced with your own mortality, your primary concern becomes protecting those who love you from all possible pain.  It is not a matter of bravery.  It is just a matter of loving that deeply.  Mickey and I share an uncommon love.  We have overcome enormous obstacles and built a history oIllness and the mind 1f disproving fatalistic predictions.  I have developed an extraordinary closeness with his family.  My own family fills my life with indescribably intense feelings.  They have known the never-ending anguish of losing Mom to a drunk driver.  They don’t deserve to deal with another untimely death.  I cannot let any of them suffer.  So the smile on my face is not an act.  It is an act of love prompted by a genuinely selfish need to be there with them to share whatever memorable moments await us all.

Donna and Dee have already made certain that I will have the best cancer surgeon in the area.  The chairman of Fina Oil, where Mickey works as a VP, vows to see that I receive VIP treat at the best cancer treatment center available.  I have too many people determined that I will be among the survivors.  I cannot let them down.

I arrange for pictures of all my family to surround me when I come out of surgery.  Sitting up on my knees on the gurney, wondering why I can’t trot down the hall to the OR, I smile at my family’s faces and remind them not to have too much fun for the next five hours.  The last thing I remember is Mickey’s hand holding mine as I am wheeled away.  I am still smiling.

Sometime during those next five hours, I lose my sense of humor.  I am groggy but aware and can hear my plaintive plea:  “Pain.  Pain.  Pain.”  I can faintly make out the images above me—my ICUhusband, son, daughter-in-law.  They watch as I am transported to ICU.  The next morning I am sure my scream shatters the glass window when two huge orderlies toss me onto the waiting gurney.  “Don’t—you—touch—me—again—without—a—member—of—my–family—present.”  They step back and are surprised when I pull myself from the gurney to the bed in my room.  My daughter, worlds away from me in lifestyle and philosophy—will stay with me the next ten days.  I watch with wonder as she handpicks the most attentive and caring staff of nurses anyone could hope for and begins to line out the plan for my care.

My gastroenterologist drops by and asks if I mind being a “teaching subject” since mine is such an unusual case.  I eagerly agree, glad to be a part of advancing medical science.  He is joined by my pathologist friend Donna, who announces that my stomach was totally clear of cancer save a tiny millimeter located at the top.  Leaving even a small part of my stomach will be too risky I am told.  “Yours must be the earliest case of stomach cancer ever diagnosed,” she declares.  How could my stomach, so full of cancer five days ago, be almost totally free of it now?  No one tries to explain that but I would later discover other equally rare and miraculous instances of spontaneous remission.SPONTANEOUS REMISSION  My body was eradicating the cancer by itself.

My cancer surgeon tells me he will construct a pouch from a piece of my large intestine that will serve as my stomach.  (I am eating a small portion of sugar-free Jello as he describes this phenomenal feat.  I smile as I recall a passage from humorist Dave Berry’s delightful book Stay Fit and Healthy Until You Are Dead in which he claims that our skin is the most important of our vital organs, because without it, all the disgusting hideous inner parts of us would fall out onto the sidewalk for all manner of people to trip over.

“Ok, Mother,” my daughter beams brightly at 7:00am (she who has never knowingly arisen before noon any day in her life since she ran away from home).  “Up we go now.  We have our goals for the day.”  First, soap bubbles so thick I have little peep holes for eyes, the triple scrub, a quick shave under the arms, a little talcum powder here and there, and lots of lotion everywhere.  Maneuvering seamlessly around all the wires and tubes, she is making sure every inch of me will be supremely soft and supple.

In and out of my morphine mind, I make a list of questions for her to ask my cancer surgeon, should I be asleep when he drops in.  I can hear him now whistling cheerfully down the hallway.  I emulate his demeanor as I am trying for the perfect-patient-of-the-ward award.  That shouldn’t be difficult since I am surrounded by the most efficient medical staff in America.

I feel for those people who hear the word cancer and drop into a deep and unalterable depression.  With the constant arrival of guests, flowers, gifts and cards, I am not likely to let my spirits sag. I am already writing thank you notes in my mind.  And they seem so inadequate when I think of the how everyone continues to buoy my spirits in so many countless ways.

Flitting around my hospital room, I accidentally pull out the feeding tube that was implanted in my side to insure my nourishment should my new “stomach” fail in some way.  I will be fine, I tell myself.  (I later learn that this little set-back will have a serious impact on my recovery.)

Following the highly regimented eating plan the first few weeks at home is not working.  Revulsion and nausea are my constant companions.  One day, as I step out of the bath tub, I glance up at the bank of mirrors I have so carefully avoided.  I gasp.  Looking back at me is the image of a captive in a concentration camp.  My skin clings to my bones.  My eyes are buried deep in their sockets.  I have gone too long without sufficient nourishment.

I call a friend who listens to my plight and reports that she knows someone who stopped his weight loss with Ensure, a repulsive high-calorie sickeningly sweet shake.  I have no choice.  Slowly, I begin to restore my lost pounds.ENSURE

This morning I am awakened by my loving husband who has been sleeping elsewhere, partly because of his cold and partly because I have to sleep upright to keep bile from coming into my throat.  “It’s time to get out and see what’s happening in the rest of the world.  We are going to Jeff’s  weightlifting meet.”  I smile.  Life is full.  Life is good.  I’m still in it.

A quarter of a century later, I am still in it.  I beat the odds and way beyond.  In 2005 two doctors from Australia were awarded the Nobel Prize in medicine for their discovery that the bacteria H-Pylori causes almost 90% of gastric ulcers and these can lead to stomach cancer.  The actual date of their discovery was three years before my ulcer appeared in 1988.  But one study shows that it can take as many as seventeen years before American doctors adapt new medical discoveries into their practice.  That means that we must all do diligent research on the nature of and treatment for our own medical conditions.  As late as 1999, still at risk for a new cancer in my intestine, I could not find a gastroenterologist who would test me for H-Pylori.  It was my family doctor, an osteopath, who did so and prescribed the two-week treatment of triple antibiotics that could have saved my stomach in 1989.

I still face challenges associated with having no stomach.  Battling the bile that comes up from my liver makes getting good sleep an elusive dream.  Ballooning up when my colon locks up brings on birthing-like pain.  Staying hydrated to avoid arrhythmia remains a struggle.  But trips to the ER are increasingly rare and sublingual B-12 has replaced those dreaded self-administered shots. I can, I can I can now say with conviction that I am an active healthy survivor who has much to be thankful for.  I credit my friends for their devotion and for referring me to the gastroenterologist who was thorough enough to biopsy my healed ulcer.  I credit him and the talented surgeon who constructed a replacement “stomach” that has worked so flawlessly all these years.  When diagnosed with stomach cancer, most people are dead within five years.  So, many call my case a medical miracle.

I remain dubious about a beneficent god who would opt to save me while letting more deserving people die.  I am more open to the possibility that having a positive spirit causes the body to pump out protective agents yet to be identified.  I don’t pretend to be able to explain medical miracles but I am deeply thankful–for the sake of those who care–that one happened to me.

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priscilla pictureAn award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

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 Bob Aronson  has worked as a broadcast journalist, Minnesota Governor’s Communications Director and for 25 years led his own company as an international communication consultant GIF shot bob by TVspecializing in health care.

In  2007 he had a heart transplant at the Mayo Clinic in Jacksonville, Florida.  He is the Bob of Bob’s Newheart and the author of most of the nearly 250 posts on this site.  He is also the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) support group.

You may comment in the space provided or email your thoughts to him 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.

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.

Hospital Errors — The Third Leading Cause of Death in the U.S.


By Bob Aronson

oopsWhen your life has been saved in hospitals several times as mine has,  it is difficult to write a blog that is critical of those institutions but, it is just as difficult to ignore the facts.  As a writer who has made a commitment to provide accurate and timely information to his readers it would be irresponsible to do so. 

This blog is about and for pre and post-transplant patients, their families, donors, donor families, caregivers and friends.  Those of us who are awaiting transplants or who have had them spend an inordinate amount of time in hospitals and clinics.  Our compromised immune systems make us far more susceptible to a myriad of diseases and problems than the average patient and that means we have to be more alert and aware of our surroundings.  It is for that reason that I am posting this information.

 I did not make up the numbers you are about to read.  They are available for everyone to see and to analyze through the links I have provided.  Your comments are not only welcome, they are encouraged.

Never Events, Hospital Acquired Conditions and Sentinel Events

Heart disease and cancer are the number one and two causes of death in the United States.  Number three is medical errors. The very people who are supposed to be experts in saving lives are also responsible for thousands of deaths.

Medical errors in hospitals are killing us faster than chronic lower respiratory diseases, stroke (cerebrovascular diseases), accidents of all kinds, Alzheimer’s disease and diabetes combined.   The very people we trust our lives to – are not only contributing to our deaths they don’t seem to be learning from their mistakes because the problem appears to be getting worse.   While many hospitals claim they are making progress the national numbers don’t show it.  The evidence to the contrary is overwhelming.  And — one cannot help but believe that the problem is even worse than is stated in this posting because there is no system in the U.S. for reporting and tracking medical errors and their results.  Voluntary reporting is spotty and incomplete so we are left with educated guestimates and they are frightening.

In 1999, the Institute of Medicine published the “To Err Is Human” report.  It generated huge front page headlines everywhere by estimating that nearly 100,000 people die every year as a result of hospital errors.  At first there was widespread denial in the medical community but no longer.  The medical profession accepts that number.  The problem is that the number is wrong.

In 2010 another number was announced.  The Office of the U.S. Inspector General for Health and Human Services said that poor hospital care contributed to the deaths of 180,000 patients in Medicare alone in any given year…  Note — they said Medicare alone!  But — that number is wrong, too.  The story is about to get much worse.

A study published in September of 2013 in the Journal of Patient Safety says the numbers may be much higher.  They say that between 210,000 and 440,000 patients die in hospitals each year as the result of preventable errors. Please note that the numbers quoted in the preceding reports only refer to deaths.  None of the numbers I have seen say anything about the number of injuries caused by medical errors.

The new estimates were the result of work by John T. James, who works as a toxicologist at NASA’s Houston, Texas space center.  James also runs a group called Patient Safety America.  http://patientsafetyamerica.com/  James dedicated the site to his 19-year old son, John Alexander James, who he says, “Died as a result of uninformed, careless, and unethical care by cardiologists at a hospital in central Texas in the late summer of 2002.”

propublica logoProPublica an investigative journalism group asked three prominent patient safety researchers to review James’ study and all said his methods and findings were credible. http://www.propublica.org/  The American Hospital Association, though, rejects the number preferring to believe the number of 98,000 deaths from the 1999 report.

What’s the right number?  Nobody knows for sure but we do know it is not getting smaller. As stated earlier there is no standardized national reporting system on medical errors, who is affected and who makes them.

So we’re left with approximations, which are imperfect in part because of inaccuracies in medical records and the fact that a good many of the errors that take place are never reported. Hospitals and physicians have traditionally fought establishing a formal reporting system for fear of prosecution.  Instead they advocate a voluntary reporting system which begs the question, “Who is going to voluntarily admit to committing an error that resulted in a patient’s injury or death.”  I have to believe the number would be quite small.  Admissions of that nature could have extremely negative effects on careers and may even open the door to civil suits or criminal prosecution.  Perhaps I can be persuaded to think otherwise but I’ve seen nothing so far to indicate any voluntary system can work.

While the lay public calls them medical mistakes or errors the medical community has chosen to use different terminology.  They refer to their errors as “Never Events” or Hospital Acquired Conditions (HACs)    Never events are never supposed to happen – but they do and the onus is clearly on hospitals to do something about them.  The Government found that one way to force hospitals to deal with these problems is to refuse payment so for several years now Medicaid and Medicare do not pay for any Hospital Acquired Condition.

When I was a communications consultant I specialized in health care so I spent a great deal of time working inoops oops and oops and around hospitals and clinics.  The great majority of them take the issue of patient safety very seriously and have implemented a multitude of actions to address the problem.  They all have preventive programs and systems on what to do when there is an error.  Most hospitals conduct a “Root Cause Analysis” every time there is a significant error so they can be sure the same error doesn’t happen again. They are working on the problem but patients owe it to themselves to always be alert and to question everything.  Hospitals need to know that we are watching very carefully and that we will report what we see and experience.

Here is a list of HACs or Never Events as prepared by the National Quality Forum (NQF).

Table. Never Events or Hospital Acquired Conditions
Surgical events
Surgery or other invasive procedure performed on the wrong body part
Surgery or other invasive procedure performed on the wrong patient
Wrong surgical or other invasive procedure performed on a patient
Unintended retention of a foreign object in a patient after surgery or other procedure
Intraoperative or immediately postoperative/post procedure death in an American Society of Anesthesiologists Class I patient
Product or device events
Patient death or serious injury associated with the use of contaminated drugs, devices, or biologics provided by the health care setting
Patient death or serious injury associated with the use or function of a device in patient care, in which the device is used for functions other than as intended
Patient death or serious injury associated with intravascular air embolism that occurs while being cared for in a health care setting
Patient protection events
Discharge or release of a patient/resident of any age, who is unable to make decisions, to other than an authorized person
Patient death or serious disability associated with patient elopement (disappearance)
Patient suicide, attempted suicide, or self-harm resulting in serious disability, while being cared for in a health care facility
Care management events
Patient death or serious injury associated with a medication error (e.g., errors involving the wrong drug, wrong dose, wrong patient, wrong time, wrong rate, wrong preparation, or wrong route of administration)
Patient death or serious injury associated with unsafe administration of blood products
Maternal death or serious injury associated with labor or delivery in a low-risk pregnancy while being cared for in a health care setting
Death or serious injury of a neonate associated with labor or delivery in a low-risk pregnancy
Artificial insemination with the wrong donor sperm or wrong egg
Patient death or serious injury associated with a fall while being cared for in a health care setting
Any stage 3, stage 4, or unstageable pressure ulcers acquired after admission/presentation to a health care facility
Patient death or serious disability resulting from the irretrievable loss of an irreplaceable biological specimen
Patient death or serious injury resulting from failure to follow up or communicate laboratory, pathology, or radiology test results
Environmental events
Patient or staff death or serious disability associated with an electric shock in the course of a patient care process in a health care setting
Any incident in which a line designated for oxygen or other gas to be delivered to a patient contains no gas, the wrong gas, or is contaminated by toxic substances
Patient or staff death or serious injury associated with a burn incurred from any source in the course of a patient care process in a health care setting
Patient death or serious injury associated with the use of restraints or bedrails while being cared for in a health care setting
Radiologic events
Death or serious injury of a patient or staff associated with introduction of a metallic object into the MRI area
Criminal events
Any instance of care ordered by or provided by someone impersonating a physician, nurse, pharmacist, or other licensed health care provider
Abduction of a patient/resident of any age
Sexual abuse/assault on a patient within or on the grounds of a health care setting
Death or significant injury of a patient or staff member resulting from a physical assault (i.e., battery) that occurs within or on the grounds of a health care setting

 Real Life Examples of Medical Mistakes

  1. Wrong Heart and Lung Transplant.  One of the most tragic medical blunders ever took place at Duke University medical center in 2003, when surgeons transplanted a heart lung combination with the wrong blood type into 17-year-old Jesica Santillan.  Her body began to shut down almost immediately. The hospital somehow secured a second and proper matched heart lung combination for Jessica but it was too late and she died.  Dr. James Jaggers accepted responsibility for the tragic mistake, and Duke along with most other hospitals now have systems that require double checking the blood and tissue matches for transplants.
  1. Souvenir of surgery.  In the year 2000 49 year old Donald Church had an abdominal tumor removed at the U of Washington Medical center in Seattle. While he left the hospital without the tumor, he had something that he didn’t have on admission — a 13-inch-long retractor had been left in Church’s abdomen by mistake. To make matters worse it was a repeat performance for the hospital, four other such occurrences had been documented there between 1997 and 2000. Fortunately, surgeons were able to remove the instrument but also agreed to pay Church nearly $100,000.
  1. Healthy kidney removed.  Park Nicollet Methodist Hospital in Minnesota’s twin cities was the site of the next never event.  A man was admitted to have one of his kidneys removed due to a cancerous tumor.  Surgeons did just that but upon a post-surgical examination of the removed kidney they found no malignancy.  That’s when they discovered they had removed the wrong one.  We can’t report further because the family involved requested anonymity but Park Nicollet publicly admitted the error.

What Patients Can Do

A CNN report suggests that many medical errors could be prevented if patients were more aggressive about consequencesmaking sure their health care providers are more focused on what they are doing.

The cable network developed this list of what they call “10 Shocking Medical Mistakes and Ways to Not Become a Victim.

1. Mistake: Treating the wrong patient
Cause: Hospital staff fails to verify a patient’s identity.
Consequences: Patients with similar names are confused.
Prevention: Before every procedure in the hospital, make sure the staff checks your entire name, date of birth and barcode on your wrist band.

2. Mistake: Surgical souvenirs
Cause: Surgical staff miscounts (or fails to count) equipment used inside a patient during an operation.
Consequences: Tools get left inside the body.
Prevention: If you have unexpected pain, fever or swelling after surgery, ask if you might have a surgical instrument inside you.

3. Mistake: Lost patients
Cause
: Patients with dementia are sometimes prone to wandering.
Consequences: Patients may become trapped while wandering and die from hypothermia or dehydration.
Prevention: If your loved one sometimes wanders, consider a GPS tracking bracelet.

4. Mistake: Fake doctors
Cause: Con artists pretend to be doctors.
Consequences: Medical treatments backfire. Instead of getting better, patients get sicker.
Prevention: Confirm online that your physician is licensed.

5. Mistake: The ER waiting game
Cause: Emergency rooms get backed up when overcrowded hospitals don’t have enough beds.
Consequences: Patients get sicker while waiting for care.
Prevention: Doctors listen to other doctors, so on your way to the hospital call your physician and ask them to call the emergency room.
6. Mistake: Air bubbles in blood
Cause: The hole in a patient’s chest isn’t sealed airtight after a chest tube is removed.
Consequences: Air bubbles get sucked into the wound and cut off blood supply to the patient’s lungs, heart, kidneys and brain. Left uncorrected the patient dies.
Prevention: If you have a central line tube in you, ask how you should be positioned when the line comes out.

7. Mistake: Operating on the wrong body part
Cause: A patient’s chart is incorrect, or a surgeon misreads it, or surgical draping obscures marks that denote the correct side of the operation.
Consequences: The surgeon cuts into the wrong side of a patient’s body.
Prevention: Just before surgery, make sure you reaffirm with the nurse and the surgeon the correct body part and side of your operation.

8. Mistake: Infection infestation
Cause: Doctors and nurses don’t wash their hands.
Consequences: Patients can die from infections spread by hospital workers.
Prevention: It may be uncomfortable to ask, but make sure doctors and nurses wash their hands before they touch you, even if they’re wearing gloves.

9. Mistake: Lookalike tubes
Cause: A chest tube and a feeding tube can look a lot alike.
Consequences: Medicine meant for the stomach goes into the chest.
Prevention: When you have tubes in you, ask the staff to trace every tube back to the point of origin so the right medicine goes to the right place.

10. Mistake: Waking up during surgery
Cause: An under-dose of anesthesia.
Consequences: The brain stays awake while the muscles stay frozen. Most patients aren’t in any pain but some feel every poke, prod and cut.
Prevention: When you schedule surgery, ask your surgeon if you need to be put asleep or if a local anesthetic might work just as well.

There are other steps you can take to protect yourself besides those offered by CNN.  For example:

Demand a hand-wash.   While hospitals try to be germ free it is hard when almost everyone who enters the building is sick.  It is a well-known fact that the best thing people can do to protect themselves from disease is frequent hand washing.  The potential for contamination is everywhere so you are well within your rights to ask personnel to wash their hands before touching you.  And…by the way, wash your hands frequently too.

Make sure your room is clean. Usually hospital rooms are thoroughly washed between patients but not as thoroughly if you are going to be there for a while.   If you are concerned with the state of your room ask for certain areas or all of it to be disinfected.  Transplant recipients in particular must be sure they are in as germ free an environment as possible.  Certainly if hospitalized they should always wear a face mask to protect themselves.  And, do your best to stay out of crowded areas like elevators.  If you must enter a crowded room, wear a face mask. All hospitals have them you just have to ask for one…

To be even more specific though, Patient Safety America suggestions these you do the following to stay safe http://patientsafetyamerica.com/truth-about-healthcare/

1. The single most important way you can help to prevent errors is to be an active member of your health care team.

That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results. Here are some specific tips, based on the latest scientific evidence about what works best.

Medicines

2. Make sure that all of your doctors know about everything you are taking. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.

At least once a year, bring all of your medicines and supplements with you to your doctor. “Brown bagging” your medicines can help you and your doctor talk about them and find out if there are any problems. It can also help your doctor keep your records up to date, which can help you get better quality care.

3. Make sure your doctor knows about any allergies and adverse reactions you have had to medicines.

This can help you avoid getting a medicine that can harm you.

4. When your doctor writes you a prescription, make sure you can read it.

If you can’t read your doctor’s handwriting, your pharmacist might not be able to either.

5. Ask for information about your medicines in terms you can understand—both when your medicines are prescribed and when you receive them.

  • What is the medicine for?
  • How am I supposed to take it, and for how long?
  • What side effects are likely? What do I do if they occur?
  • Is this medicine safe to take with other medicines or dietary supplements I am taking?
  • What food, drink, or activities should I avoid while taking this medicine?

6. When you pick up your medicine from the pharmacy, ask: Is this the medicine that my doctor prescribed?

A study by the Massachusetts College of Pharmacy and Allied Health Sciences found that 88 percent of medicine errors involved the wrong drug or the wrong dose.

7. If you have any questions about the directions on your medicine labels, ask.

Medicine labels can be hard to understand. For example, ask if “four doses daily” means taking a dose every 6 hours around the clock or just during regular waking hours.

8. Ask your pharmacist for the best device to measure your liquid medicine. Also, ask questions if you’re not sure how to use it.

Research shows that many people do not understand the right way to measure liquid medicines. For example, many use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked syringes, help people to measure the right dose. Being told how to use the devices helps even more.

9. Ask for written information about the side effects your medicine could cause.

If you know what might happen, you will be better prepared if it does—or, if something unexpected happens instead. That way, you can report the problem right away and get help before it gets worse. A study found that written information about medicines can help patients recognize problem side effects and then give that information to their doctor or pharmacist.

Hospital Stays

10. If you have a choice, choose a hospital at which many patients have the procedure or surgery you need.

Research shows that patients tend to have better results when they are treated in hospitals that have a great deal of experience with their condition.

11. If you are in a hospital, consider asking all health care workers who have direct contact with you whether they have washed their hands.

Hand washing is an important way to prevent the spread of infections in hospitals. Yet, it is not done regularly or thoroughly enough. A recent study found that when patients checked whether health care workers washed their hands, the workers washed their hands more often and used more soap.

12. When you are being discharged from the hospital, ask your doctor to explain the treatment plan you will use at home.

This includes learning about your medicines and finding out when you can get back to your regular activities. Research shows that at discharge time, doctors think their patients understand more than they really do about what they should or should not do when they return home.

Surgery

13. If you are having surgery, make sure that you, your doctor, and your surgeon all agree and are clear on exactly what will be done.

Doing surgery at the wrong site (for example, operating on the left knee instead of the right) is rare. But even once is too often. The good news is that wrong-site surgery is 100 percent preventable. The American Academy of Orthopedic Surgeons urges its members to sign their initials directly on the site to be operated on before the surgery.

Other Steps You Can Take

14. Speak up if you have questions or concerns.

You have a right to question anyone who is involved with your care.

15. Make sure that someone, such as your personal doctor, is in charge of your care.

This is especially important if you have many health problems or are in a hospital.

16. Make sure that all health professionals involved in your care have important health information about you.

Do not assume that everyone knows everything they need to.

17. Ask a family member or friend to be there with you and to be your advocate (someone who can help get things done and speak up for you if you can’t).

Even if you think you don’t need help now, you might need it later.

18. Know that “more” is not always better.

It is a good idea to find out why a test or treatment is needed and how it can help you. You could be better off without it.

19. If you have a test, don’t assume that no news is good news.

Ask about the results.

20. Learn about your condition and treatments by asking your doctor and nurse and by using other reliable sources.

You may ask yourself upon reading all of this what the U.S. Food and Drug Administration (FDA) is doing to make hospitals safer.  Well, they can’t be in every hospital all the time to watch everything and…that’s not their role.  The FDA is probably not doing enough to protect us, there’s no way you can satisfy everyone but they are doing a few things that could make a huge difference.  One of which is to eliminate drug name confusion.

To minimize confusion between drug names that look or sound alike, the FDA reviews about 300 drug names a year before they are marketed. “About one-third of the names that drug companies propose are rejected,” says Phillips. The agency tests drug names with the help of about 120 FDA health professionals who volunteer to simulate real-life drug order situations. “FDA also created a computerized program that assists in detecting similar names and that will help take a more scientific approach to comparing names,” Phillips says.

After drugs are approved, the FDA tracks reports of errors due to drug name confusion and spreads the word to health professionals, along with recommendations for avoiding future problems. For example, the FDA has reported errors involving the inadvertent administration of methadone, a drug used to treat opiate dependence, rather than the intended Metadate ER (methylphenidate) for the treatment of attention-deficit/hyperactivity disorder (ADHD). One report involved the death of an 8-year-old boy after a possible medication error at the dispensing pharmacy. The child, who was being treated for ADHD, was found dead at home. Methadone substitution was the suspected cause of death. Some FDA recommendations regarding drug name confusion have encouraged pharmacists to separate similar drug products on pharmacy shelves and have encouraged physicians to indicate both brand and generic drug names on prescription orders, as well as what the drug is intended to treat.

The last time the FDA changed a drug name after it was approved was in 2004 when the cholesterol-lowering medicine Altocor was being confused with the cholesterol-lowering medicine Advicor. Now Altocor is called Altoprev, and the agency hasn’t received reports of errors since the name change. Other examples of drug name confusion reported to the FDA include:

  • Serzone (nefazodone) for depression and Seroquel (quetiapine) for schizophrenia
  • Lamictal (lamotrigine) for epilepsy, Lamisil (terbinafine) for nail infections, Ludiomil (maprotiline) for depression, and Lomotil (diphenoxylate) for diarrhea
  • Taxotere (docetaxel) and Taxol (paclitaxel), both for chemotherapy
  • Zantac (ranitidine) for heartburn, Zyrtec (cetirizine) for allergies, and Zyprexa (olanzapine) for mental conditions
  • Celebrex (celecoxib) for arthritis and Celexa (citalopram) for depression.

For more information on the FDA and what they are doing click on this link http://www.fda.gov/

The bottom line on medical errors is activist patients.  Don’t sit by quietly when you perceive something to be wrong with your care or the care of someone near and dear to you.  Speak up, tell someone about your concerns.  Every city and state has some sort of health department so if you see something wrong speak up and tell the appropriate authority starting with the hospital.

Most importantly, though, be aggressive and knowledgeable about your own health care.  Don’t be afraid to ask for second opinions, to question physicians, nurses and other practitioners.  Force your health care provider to speak to you in plain English and if you don’t understand ask for clarification.  Hospital personnel work for you so they have a responsibility to respond to your concerns in as thorough and clear a manner as possible. The only way hospitals will really change for the better is for citizens, patients like you and me to speak up and let them know we know.

-0-

bob half of bob and jay photoBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

The Answers to Most Post Transplant Questions


If you are a regular Bob’s NewHeart reader you know I have posted hundreds of articles on donation/transplantation issues and you might think that by now I, myself, would be a pretty good source of information.  Well, whenever I let myself think that, even for a second, I stumble across something new that reminds me that I am only a reporter, not a medical expert.

Your Questions Answered

Some of the most common questions I hear from readers include, ”What can I expect after my transplant?  What will life be like? Will I be able to resume a normal life right away? Will there be complications?  Well, it’s hard to find the answers to all those questions in one place but today’s post comes about as close as any I’ve seen.

This is a great resource for both pre and post organ/tissue transplant patients.  Please read it and pass it on.  It is a reprint from the American Society of Transplantation (AST) publication “Healthy Transplant.”  Let them know you appreciate their efforts on your behalf.

Some of the graphs and charts may be too small for you to read but if you click on the link you can enlarge and study them.

http://www.healthytransplant.com/health_maintenance/health_after_transplantation.aspxHealth After Transplantation

KEEPING A HEALTHY OUTLOOK ON LIFE

After an organ transplant, there is hope for the future. However, there are a number of health concerns that you will face. For example, there is the chance that your new organ will not always function as well as it should. Transplant recipients also have a higher risk of developing certain conditions such as high blood pressure, high blood lipid levels, diabetes, kidney problems, liver problems, and bone disease. Infection and cancer are also conditions you need to keep in mind.

Some conditions can affect any transplant recipient and some conditions are specific to the type of organ transplanted.

 

 

 

 

 


Healthy Transplant Images

CARING FOR YOUR NEW ORGAN

Lab Tests for Measuring Organ Function

It is important to keep all of your scheduled checkups and lab appointments for monitoring organ function. Testing allows your transplant team to monitor the status of your transplant, detect rejection early, and start effective therapy right away.

Common tests for checking organ function are listed below:

  • Liver function tests — Blood tests are used to monitor liver function (e.g. albumin); damage to liver cells (e.g., alanine transaminase [ALT], Aspartate transaminase [AST]) and some with conditions linked to the path by which bile is produced by the liver (e.g., gamma-glutamyl transferase and alkaline phosphatase)
  • Pulmonary function tests — Tests like spirometry show how well you lungs are working
  • Bronchoscopy — A test that uses an instrument (bronchoscope) to view the airways and diagnose lung disease
  • Chest x-ray
  • Upper and lower gastrointestinal (GI) endoscopies — These evaluations can detect abnormalities of your esophagus, stomach, and intestine
  • Hemodynamic monitoring — Sonar-type echos may be used to detect high blood pressure in your heart and lungs or a catheter may be placed in the heart for periods of six to 12 hours
  • Echocardiogram — Sonar-type echos can show abnormalities in the heart and lungs
  • Electrocardiogram (EKG or ECG) — Asseses the electrical activity within your heart
  • Renal function studies — Your doctor may ask you to collect your urine (usually for 24 hours) to evaluate if your kidneys are working properly. Blood tests such as serum creatinine are performed to measure kidney function
  • Biopsy — A biopsy may also be taken to determine if a rejection episode has occurred. This is done by collecting a small piece of tissue from the organ and examining it under a microscope

OTHER HEALTH ISSUES

Anti-rejection medications increase your risk of developing certain conditions such as infection and cancer. Other side effects of some anti-rejection medications include high blood pressure, diabetes, high blood lipids, kidney disease, heart attack, stroke, and bone disease. Knowing the risks and taking steps now to prevent them is a good way to keep you and your new organ healthy.

HIGH BLOOD PRESSURE

High blood pressure (hypertension) is a common complication in patients who receive a transplant. High blood pressure can damage the arteries and the heart, increasing the risk of a stroke, a heart attack, kidney problems, or heart failure.

For many patients, the cause of hypertension is not known. However, people with kidney disease, diabetes, or high blood pressure before the transplant are at higher risk of high blood pressure after the transplant. Other factors that contribute to high blood pressure after a transplant include a diet high in salt, clogged arteries, high blood lipid levels, smoking, obesity, and some anti-rejection medications such as cyclosporine, tacrolimus, and steroids (prednisone).

Recommended Blood Pressure Levels

People with a blood pressure of 140/90 mm Hg or higher are considered hypertensive. While most transplant recipients should have a blood pressure of 130/80 mm Hg, the ideal blood pressure can vary from person to person. The American Heart Association (AHA) guidelines for the target blood pressure in the general population can also be used as guidelines for organ transplant recipients. Normal blood pressure values for children are based on age, sex and height and in general are much lower than in adults.

Classification

Systolic Pressure (mm Hg)

Diastolic Pressure (mm Hg)

Normal

Less than 120

Less than 80

Prehypertension

120-139

80-89

Stage 1 hypertension

140-159

90-99

Stage 2 hypertension

160 or higher

100 or higher

High blood pressure usually does not cause any symptoms so it is important to have your blood pressure checked by your transplant team at regular follow-up exams. Your transplant team may also want you to monitor your blood pressure closely while at home.

Reducing High Blood Pressure

Making some lifestyle changes can lower your blood pressure and prevent hypertension

Figure. Lifestyle changes for healthier living.

Figure. Lifestyle changes for healthier living.

Sometimes hypertension can be controlled with lifestyle changes such as diet and exercise, but most patients also require medication.

There are a variety of medications for treating and controlling high blood pressure

Figure. Blood pressure medications

Figure. Blood pressure medications

The most commonly prescribed medications include ACE inhibitors, ARBs, calcium channel blockers, beta-blockers, and diuretics. Some of these medications may have interactions with certain anti-rejection medications.

HIGH BLOOD LIPIDS

While lipids (cholesterol and related compounds) in your blood are necessary for good health, too high levels of some lipids can increase your risk of cardiovascular disease, a leading cause of death among transplant recipients. Most transplant recipients develop high blood lipids. Kidney, heart, and liver transplant patients usually display similar elevations in total cholesterol (TC) and low-density lipoprotein (LDL) cholesterol (“bad cholesterol”).

Eating the wrong foods, lack of exercise, and being overweight can increase your risk of developing high levels of LDL cholesterol (“bad cholesterol”), high levels of triglycerides, and low levels of HDL cholesterol (“good cholesterol”). Transplant recipients who are obese, smoke cigarettes, or have high blood pressure are more likely to have high cholesterol. Steroids and some of the other anti-rejection medications, such as cyclosporine, sirolimus, and tacrolimus, can also cause high blood lipid levels.

Recommended Blood Lipid Levels

Be sure to ask your doctor what your cholesterol levels should be. In some instances, transplant recipients can follow target levels of blood lipids recommended in the National Cholesterol Education Program (NCEP) guidelines.

Lipid

Low

Optimal

High

LDL Cholesterol

 

< 100 mg/dL

160-189 mg/dL

HDL Cholesterol

< 40 mg/dL

 

60 mg/dL

Total Cholesterol

 

 

240 mg/dL

Reducing High Blood Lipid Levels

Making healthy lifestyle changes can lower your chances of developing heart disease. You can help lower your blood lipid levels with a proper diet and regular exercise. A diet low in cholesterol and saturated fats may also help reduce your risk of coronary artery disease. In addition to making healthy changes to your diet, exercising for a minimum of 20 to 30 minutes 3 to 4 times a week can also reduce your lipid levels and lower your risk of heart attack or stroke. If you smoke, it is important that you STOP!

If adjustment of your anti-rejection drugs, diet, and exercise are not successful in reducing lipid levels, your doctor may want you to take cholesterol-lowering medications. There are several medications that work to lower blood lipids. The most commonly prescribed medications are called statins, which include atorvastatin (Lipitor®), simvastatin (Zocor®), pravastatin (Pravachol®), fluvastatin (Lescol®), rosuvastatin (Crestor®), and lovastatin (Mevacor®).

If your doctor prescribes a statin, you will need to be monitored for side effects because the risk of side effects is greater when taken with anti-rejection medications. You will also need blood tests to monitor liver and muscle function. Other types of medication that your transplant team might prescribe to treat high blood lipids include bile acid sequestrants, nicotinic acid, fibric acids, and cholesterol absorption inhibitors.

DIABETES

High blood glucose can cause many health problems, including diabetes, heart disease, kidney injury, nerve damage, and eye problems.

Post-transplant diabetes (PTDM) is more common in transplant recipients who have a family history of diabetes as well as those who are overweight, are taking steroids, or have hepatitis C. Diabetes after a transplant is also more common among African Americans and some other ethnic groups such as Native Americans. Other risk factors for PTDM include older age of the recipient.

Controlling Blood Sugar Levels

Most transplant recipients with diabetes can follow the American Diabetes Association (ADA) guidelines. Patients with PTDM should establish a healthy (weight-reducing, if necessary) diet with a structured exercise program. A healthy diet is needed to prevent diabetes or to help control your glucose if diabetes does occur. For all transplant recipients, it is best to eat a healthy diet and exercise regularly to avoid weight gain and reduce the risk of developing high blood glucose or diabetes.

Your transplant coordinator or dietician can help determine your recommended daily calorie intake. Limiting the amount of fats and sugar in your diet can also help to maintain a healthy level of blood glucose.

Treatment Options for Controlling Diabetes

There are several types of medications available for patients with diabetes. Depending on the level of glucose in your blood, treatment with oral hypoglycemic drugs and/or insulin may be indicated. For many transplant recipients, insulin injections or an insulin pump is an option for controlling blood sugar. Or, you may be given an oral medication to control blood glucose levels. Your transplant team will determine which medication is right for you.

KIDNEY DISEASE

Kidney function is often decreased in transplant recipients. This may be caused by a pre-existing condition such as diabetes, high blood pressure, or injury to the kidney before a transplant. Or it may be caused by medications used to prevent rejection after a transplant.

The best way to help prevent kidney disease is to keep your blood pressure and blood glucose under control and to maintain a healthy weight. In addition, regular checkups with blood and urine tests will give your doctor important information for detecting early changes in kidney function and allowing appropriate steps to be taken.

BLOOD VESSELS DISEASE

Transplant recipients have a higher risk of developing blood vessel disease. Some anti-rejection medications increase the risk of high lipid levels, which can clog arteries and restrict the flow of blood to the heart and brain. Deposits — called atherosclerotic plaque — can completely or partially block blood vessels resulting in a myocardial infarction (heart attack) or acute coronary syndromes.

Likewise, a stroke can occur if an artery that supplies blood to the brain becomes blocked. Partial blockage may temporarily reduce the blood supply to the brain. A complete loss of blood supply to the brain results in a stroke.

BONE DISEASE

Bone disease is a problem for many organ transplant recipients. Organ failure before your transplant may cause bones to become thin and brittle (osteoporosis). Other causes of osteoporosis include use of some anti-rejection drugs (corticosteroids), overactive parathyroid gland, cigarette smoking, and not enough calcium in your diet.

Preventing Bone Disease

There are some basic things you can do to help prevent or treat bone disease.

  • Exercise regularly, including weight lifting or strength training — be sure to discuss weight limits with your transplant team before beginning an exercise program
  • Eat foods that are high in calcium, including low-fat yogurt, cheese, and milk
  • Choose foods and juices with calcium added
  • Get plenty of dietary protein (unless restricted by your doctor)
  • Take calcium supplements if directed by your doctor
  • Take vitamin D only as directed by your doctor
  • Stop smoking

Your doctor or transplant dietician will tell you if you need to take calcium or vitamin D supplements. Your doctor may also want you to take medications that prevent bone thinning, including bisphosphonates such as alendronate (Fosamax®), etidronate (Didrocal®), and risedronate (Actonel®) or calcitonin.

STAYING FIT

Diet – Things are shaping up

The recommended diet for transplant patients consists of 30% fats, 50% carbohydrates and 20% protein.

Figure. Recommended composition of diet for transplant recipients

Figure. Recommended composition of diet for transplant recipients

Your transplant dietician will give you specific instructions about your recommended daily allowance of specific nutrients. Some tips for following a healthy diet include:

  • Eat high-fiber foods such as raw fruits and vegetables
  • Increase your calcium intake by eating low-fat dairy products and green leafy vegetables or by taking calcium supplements (if directed by your doctor)
  • Eat less salt, processed foods, and snacks
  • Use herbs and spices to add flavor instead of salt
  • Drink plenty of water (unless you are told to limit fluids)
  • Eat as little fat and oil as possible
  • Eat high-protein foods such as lean meat, chicken (without the skin), fish, eggs, nuts (unsalted), and beans
  • Select healthier condiments such as mustard, low-fat mayonnaise, and low-fat salad dressing
  • Instead of frying, try baking, broiling, grilling, boiling, or steaming foods
  • Instead of using oil to cook, use nonstick, fat-free spray

Exercise

Exercise is a great way to help increase your energy and strength after a transplant. A regular exercise routine will also help you maintain your ideal weight, prevent high blood pressure and high lipid levels, and keep your bones strong. It also helps relieve stress and overcome feelings of depression.

Soon after your transplant, you’ll want to start slow with a low-impact activity such as walking. With time, you can increase your workout with more demanding activities such as bicycling, jogging, swimming, or whatever exercise you enjoy. Training with dumbbells, cuff weights, or weights will increase strength and help prevent bone loss, but check with your transplant team first to determine how much weight is safe for you to lift. Stretching exercises are also important for muscle tone and flexibility. Be sure to check with your doctor before beginning or changing your exercise routine.

STOP Smoking

Smoking also contributes to already high risk of cardiovascular, particularly in patients with diabetes and may be detrimental to kidney function. Transplant recipients who smoke should to STOP smoking as soon as possible.

Dental Care

Routine dental care is important both before and following transplantation as oral infections can cause significant medical problems and even death. According to the American Heart Association (AHA), pre-treatment with antibiotics is not needed for routine dental care unless the patient has an underlying heart condition that increases the risk of developing a heart infection. These include patients with heart transplants with graft valvulopathy (or a previous history of endocarditis, prosthetic valves, and certain forms of congenital heart diseases.)

Gingival overgrowth (hypertrophy) is a dental issue that can arise in transplant patients especially those using cyclosporine. This occurrence of gingival overgrowth can be reduced by practicing good oral hygiene.

ROUTINE FOLLOW-UP EXAMS

All people should have regular exams to help prevent illness.

As we get older, there are some specific tests that should be done on a regular basis

Figure. Recommended tests by patient age

Figure. Recommended tests by patient age

Self-Monitoring

In addition to the tests that your transplant team will perform at regular follow-up visits, you will need to do some self-testing at home. Here are some things you will need to monitor:

  • Weight – Weigh yourself at the same time each day, preferably in the morning. If you gain 2 pounds in a day or more than 5 pounds total, call your transplant team.
  • Temperature – You should take your temperature daily, especially when you feel like you have a fever. Call your transplant team if your temperature is too high.
  • Blood pressure – Check your blood pressure as often as your transplant team recommends.
  • Pulse – You should check your pulse daily. A normal heart rate when not exercising should be 60 to 100 beats per minute. (If you have had a heart transplant, your resting heart rate may be as high as 110 to 120 beats per minute.)
  • Blood sugar – If you have high blood sugar or diabetes, you will need to monitor your blood sugar using a glucometer.

Do not take any pain medication (for example, Tylenol®, Motrin®, or Advil®), cold remedy, antacid, herbal medication, or any over-the-counter medication unless your transplant team tells you to.

PREGNANCY: BENEFITS AND RISKS

For female transplant recipients of child-bearing age, fertility is usually restored immediately after a transplant.

There have been thousands of births among women with transplanted organs.

Figure. Number of pregnancies in the US reported in organ transplant recipients

Figure. Number of pregnancies in the US reported in organ transplant recipients

Although pregnancy is now an expected part of the benefits afforded to women by organ transplantation, there are also a number of considerations.

Getting pregnant is generally not recommended within the first year after a transplant because the doses of anti-rejection medications are highest; there is a greater risk of rejection; and many other medications are prescribed that are toxic to the developing fetus. Female transplant recipients of child-bearing age should continue using birth control until the doctor says that it is okay to get pregnant.

Male transplant recipients may also be concerned about their ability to have children. Men may have fertility problems related to some transplant medications, but many men have been able to father healthy children after a transplant.

If you are interested in, or thinking about, becoming pregnant you must talk to your transplant team first. Pregnancy should be planned when organ function and anti-rejection therapy are stable and there are no signs of rejection, high blood pressure, or infection.

High Risk Pregnancy

According to National Transplantation Pregnancy Registry (NTPR) over 70% of births to female transplant recipients are live births and most have favorable outcomes for child and mother. Although this success is encouraging, these pregnancies are still considered high risk. There are risks of complications during pregnancy for the transplant recipient as well as risk of infection and exposure to anti-rejection drugs for the fetus.

For example, there is a greater risk of high blood pressure during pregnancy in the woman who has received a transplant. The risk of infection is higher for all transplant recipients, and urinary tract infections are the most common infections during pregnancy. Other infections that may cause concern during pregnancy include herpes, hepatitis, toxoplasmosis, and cytomegalovirus. Other risks include preeclampsia and preterm delivery. The fetus is also at risk for infections such as cytomegalovirus and herpes simplex virus related to the suppression of the mother’s immune system by anti-rejection drugs.

A common question is whether the baby born to a woman with a transplanted organ will be normal. We know that some babies are born premature to mothers with transplants and that they have low birth weights. It is not known whether there are long-term effects on the baby’s development.

You should inform your baby’s pediatrician that your baby was exposed to anti-rejection drugs in the womb. There is a higher risk of birth defects with some anti-rejection drugs especially mycophenolate mofetil and azathioprine. The levels of anti-rejection drugs in the mother’s blood must be monitored closely. Monitoring of blood levels is particularly important in the third trimester, when fetal metabolism may increase the clearance of anti-rejection drugs from the blood. Ask your transplant team whether or not you should breast-feed. It is not known whether breast-feeding while on certain anti-rejection medications can harm the baby.

A major concern for transplant recipients is whether pregnancy will lead to organ rejection or decreased function of the transplanted organ. In general, pregnancy does not affect organ function or patient survival as long your organ is working very well. But, it is very important to discuss with your transplant team whether or not a pregnancy will be too risky. Because pregnancy is considered high risk for transplant recipients, your transplant team may recommend and work with an obstetrician who specializes in high-risk pregnancies.

References
Armenti Clin Transpl. 2006:57-70
Cohen. Am J Kidney Dis. 2001;38:S10-24
Eyre. Circulation 2004;109:3244-55
Feurer. Minerva Chir. 2002;57:257-71
Grundy. Circulation 2004;110:227-39
McCashland. Liver Transpl. 2001;7:S2-12
McGuire. Am J Transplant. 2009;9:1988-2003
McKay. Am J Transpl 2005; 5:1592–1599
McKay. Clin J Am Soc Nephrol 2008;3: S117–S125
McKay. N Engl J Med 2006;354;12
Padiyar. Prim Care. 2008;35:433-50
Steinman. Transplantation. 2001;71:1189-204
Ward. J Ren Nutr. 2009;19:111-22
Wilson. J Am Dent Assoc 2007; 138: 739–745, 747–760

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

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

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

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

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

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

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

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

The Colonoscopy, One Man’s Perpsective


Both pre and post transplant patients must have colonoscopies as part of their physical examination,  It is a requirement and there’s no avoiding the procedure.  Actually the colonoscopy itself is no big deal because you are sedated when it takes place but the prep…the prep for the event is a major traumatic experience from which few ever fully recover.

I’m sure all of you are familiar with the humor of Dave Barry the Pulitizer Prize winning humor columnist for the Miami Herald.   He is one of the funniest writers in the business so please prepare for belly laughs as you read about his colonoscopy experience.

Colonoscopy Journal:

By Dave Barry

I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy.

 

A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis.

 

Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner.

 

I nodded thoughtfully, but I didn’t really hear anything he said, because my brain was shrieking, ‘HE’S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!’

 

 

 

I left Andy’s office with some written instructions, and a prescription for a product called ‘MoviPrep,’ which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America ‘s enemies.

 

 

I spent the next several days productively sitting around being nervous.

Then, on the day before my colonoscopy, I began mypreparation. In accordance with my instructions, I didn’t eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor.

 

 

 

Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes – and here I am being kind – like a mixture of goat spit and urinal cleanser, with just a hint of lemon.

 

 

The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ‘a loose, watery bowel movement may result.’

This is kind of like saying that after you jump off your roof, you may experience contact with the ground.

 

 

MoviPrep is a nuclear laxative. I don’t want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.

 

 

After an action-packed evening, I finally got to sleep.

 

 

The next morning my wife drove me to the clinic.. I was very nervous Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ‘What if I spurt on Andy?’ How do you apologize to a friend for something like that? Flowers would not be enough.

 

 

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

 

 

Then a nurse named Eddie put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Eddie was very good, and I was already lying down. Eddie also told me that some people put vodka in their MoviPrep.

 

 

At first I was ticked off that I hadn’t thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house.

 

When everything was ready, Eddie wheeled me into the procedure room, where Andy was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Andy had it hidden around there somewhere. I was seriously nervous at this point.

Andy had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand.

 

 

There was music playing in the room, and I realized that the song was ‘Dancing Queen’ by ABBA. I remarked to Andy that, of all the songs that could be playing during this particular procedure, ‘Dancing Queen’ had to be the least appropriate.

 

 

‘You want me to turn it up?’ said Andy, from somewhere behind me..

‘Ha ha,’ I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

 

 

I have no idea. Really. I slept through it. One moment, ABBA was yelling ‘Dancing Queen, feel the beat of the tambourine,’ and the next moment, I was back in the other room, waking up in a very mellow mood.

 

 

Andy was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Andy told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.

 

On the subject of Colonoscopies…
Colonoscopies are no joke, but these comments during the exam were quite humorous….. A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:

  

1. Take it easy Doc.. You’re boldly going where no man has gone before.

2. ‘Find Amelia Earhart yet?’

3. ‘Can you hear me NOW?’

4. ‘Are we there yet? Are we there yet? Are we there yet?’

5. ‘You know, in Arkansas , we’re now legally married.’

6. ‘Any sign of the trapped miners, Chief?’

7. ‘You put your left hand in, you take your left hand out…’

8. ‘Hey! Now I know how a Muppet feels!’

9. ‘If your hand doesn’t fit, you must quit!’

10. ‘Hey Doc, let me know if you find my dignity.’

11. ‘You used to be an executive at Enron, didn’t you?’

12. ‘God, now I know why I am not gay.’

 

And the best one of all:
13. ‘Could you write a note for my wife saying that my head is not up there?’

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

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

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

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

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

En Espanol

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

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

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

Are Elected Officials in Bed with the Dialysis Industry?


People who are diagnosed as needing organ transplants are end-stage patients.  That means medical science has run out of alternatives to extend life and a transplant is the last and most beneficial approach.  Transplants are not cures but they can offer a considerable extension of life provided the patient adheres to the program and has on-going, expert medical care.

At least twice very day a transplant recipient must take the daily dose of anti-rejection drugs.  They are effective but expensive.  They can run as high as $1,500 a month and if you quit taking them you can and likely will die.  If you are of retirement age or disabled your Kidney transplant is covered by Medicare and most of the cost of the drugs as well.  If you are under 65 and not disabled and diagnosed with End Stage Renal Disease (ESRD) your kidney transplant will still be covered by Medicare but your anti-rejection drugs will only be covered for 36 months and then you are on your own (detailed explanation below).

If after 36 months you go into rejection because you can’t afford the meds, Medicare will pay for dialysis and even pay for another transplant but not for the drugs which would prevent needing either.  The drugs would be a fraction of the cost of the two alternatives that are covered.  At best that is just plain dumb!

Someone said a long time ago that, “If you like either sausage or the law, you should watch neither being made.”  Well, that certainly applies to this issue.  Another of my favorite expressions which also applies here is, “No one’s life, liberty or property are safe when the legislature is in session.”  These two expressions apply perfectly to the anti-rejection medicine silliness.

The entire situation and what to do about it is explained below.

The Current State Of Access to Post transplant Care

By

Christine S. Rizk, JD, and Sanjiv N. Singh, MD, JD

http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html

Virtual Mentor. March 2012, Volume 14, Number 3: 250-255. American Medical Association

This article provides historical perspective on the evolution of coverage for kidney transplant patients and attempts to identify what initiatives would most effectively and efficiently improve their survival.

As of January 24, 2012, in the United States, there were 112,767 waitlist candidates on the various national transplant registries [2]. Of those candidates, 90,563 were waiting for kidneys, but in 2011 only 13,430 kidney transplants were performed [3]. The need for kidneys far outweighs the availability of suitable donor organs, and some postulate that the Patient Protection and Affordable Care Act of 2010 (ACA) may worsen the shortage by eliminating barriers to insurance coverage based on preexisting conditions, lifetime coverage caps, and required periods of pretransplant dialysis [4].

Even more critical from a clinical, economic, and moral perspective is the fact that the additional end-stage renal disease (ESRD) patients now expected to receive transplants by 2014 will be most vulnerable in the posttransplant phase of care. Coverage for pre transplant dialysis and maintenance drugs for ESRD, but not post transplant care, receives strong support in Washington from large dialysis and pharmaceutical companies, which derive significant profits from dialysis, ESRD drugs, and dialysis-related services [5]. For ESRD patients, dialysis is covered by Medicare for life [6].

For posttransplant care, however, Medicare coverage is limited, providing only 80 percent of the cost of immunosuppressive medications for 36 months after transplantation (for those whose Medicare entitlement is based on ESRD) and no coverage thereafter. Despite the fact that effective and long-term immunosuppression is essential for survival of transplant patients [7], the vast majority are left to fund 20 percent of the cost for the first 3 years of immunosuppressive drugs ($13,000 to $15,000 total cost per year per patient) [8], and, for patients under 65 who are not disabled, all of the cost of immunosuppressive drugs thereafter [9].

Not surprisingly, this system leads to noncompliance. Many patients cope with the financial burden by “spreading out” their anti-rejection drugs, taking them less often or not at all [10, 11]. A recent meta-analysis reports that “about 22.6 of 100 adult transplant patients per year fail to take anti-rejection drugs” [12]. If allograft failure occurs due to nonadherence or a patient is considered unable to pay for posttransplant costs, with few exceptions, she is typically not relisted [13, 14]. According to a study focusing on medication nonadherence among transplant patients, nonadherence was more prevalent among kidney recipients than among recipients of other organs and more prevalent in the United States than in Europe [12].

Legislative History

Congress has continually struggled with the tension between supporting low-income patients and controlling the costs of government-funded health care. The legislative history of renal-transplant drug coverage highlights this struggle.

The Social Security Act Amendments of 1965, which created Medicare and Medicaid, initiated medical insurance for seniors, families with dependent children, the blind, and the disabled [15]. At the SSA’s inception, Medicare provided for prescription drugs that were administered in the physician’s office but did not provide coverage for outpatient prescription drugs [14].

In 1972, on the eve of President Richard Nixon’s reelection, after much debate and political pressure to expand health care insurance, amendments were passed that provided increased coverage in specific areas. They specifically designated chronic kidney disease patients “disabled” for the purpose of receiving Medicare coverage but only after at least 3 months of dialysis and only for 12 months after transplantation [16].

Undoubtedly, these amendments were the original and now obviously outdated roots of the notion that posttransplant care benefits should be time-limited. At the time, such a notion was defensible. Dialysis was then a cost-effective and, more importantly, still superior way to extend lives, while kidney transplantation was a risky medical procedure on the frontier of available therapies. In the decades that would follow, however, renal transplantation outpaced dialysis in mortality reduction and overall clinical outcomes [17]. Meanwhile, the number of eligible patients who used dialysis far exceeded expectations, and the ESRD entitlement became quite costly [14].

In the last 3 decades, the dialysis entitlement has remained largely intact while posttransplant entitlements have waxed and waned in small stutters.

  • As a response to the increased costs of dialysis, Congress passed an amendment in 1978 extending Medicare posttransplant coverage from 1 year to 3 years; however, this amendment did not cover the cost of outpatient immunosuppressive medications [14].
  • In 1984, Congress passed the National Organ Transplant Act of 1984 to ban the sale of organs [18]; extended coverage for immunosuppressive drugs was considered but ultimately left out of the bill, mostly due to funding concerns and political bargaining [14].
  • Posttransplant drug coverage gained some traction in the Omnibus Budget Reconciliation Act of 1987 which included Medicare coverage of 80 percent of a kidney transplant recipient’s immunosuppressive drug costs (including outpatient immunosuppressive prescription drugs) for 1 year after transplant [14, 19]. This was eventually extended, in 1997, to cover 36 months of immunosuppressive drug costs [9].
  • In 2000, Congress extended Medicare coverage of immunosuppressive drug costs to the life of the patient, but only for those who are disabled or over 65. This often leaves those patients most at risk for nonadherence and noncompliance—i.e., younger kidney recipients under 65—uninsured after 3 years [14].

Despite decades of legislative history and clinical data revealing the obvious gaps in posttransplant care entitlements, extending the duration of coverage for immunosuppressive-drug costs was not included in the ACA. In a provocative piece published in 2010 in the Clinical Journal of the American Society of Nephrology, Cohen and colleagues assert that “in response to pressure from the corporate dialysis community and their kidney coalition, several members of Congress acted to prevent the patient immunosuppressive provision from being included in the final health care reform package. Some of these opposing voices on Capitol Hill have been generously supported by the large dialysis providers for years” [5].

It is theoretically possible that the ACA’s insurance exchanges will include lifetime coverage for immunosuppressive drugs. These exchanges will not be implemented until 2014, however. Moreover, it is not clear exactly what type of coverage will be offered and whether such lifetime coverage will be offered in the lower-priced options, where it is most needed [9].

Cost Savings for the Federal Government

Continuing the current limitations on coverage of posttransplant medications is actually costing the health care system more money in the long term. Studies have shown that it is less costly to continue covering the cost of immunosuppressive drugs for kidney transplant patients after 36 months than it is to cover the costs of resuming dialysis for the same population. For example, a University of Maryland study concluded that it was more cost-effective to continue covering immunosuppressive drugs than it was to pay for dialysis, finding that “the breakeven point was 2.7 years for all of the cases [it] analyzed and for 30 percent of all patients who did not need to be readmitted to the hospital during the year after their transplant, the breakeven point was only 1.7 years” [10]. A study conducted by the Institute of Medicine (IOM) also concluded that lifetime coverage of immunosuppressive drugs would lead to cost savings because it would reduce nonadherence and thereby improve kidney allograft survival, reducing long-term reliance on dialysis [12].

Current Legislation

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplants Patients Act of 2011, currently pending in committee in both the House and the Senate, would extend coverage of immunosuppressive drugs for kidney transplant patients for the lifetime of the kidney [20, 21]. The bill is bicameral, bipartisan, and supported by the transplant community [22]. As noted by Cohen et al, however, similar attempts have failed in the past, most recently with the proposed Durbin amendment to the ACA [5]. Similar attempts by Congress in 2003 and 2007 to extend lifetime immunosuppressive coverage also failed in the wake of funding concerns and political jockeying [14].

Conclusion

Extending immunosuppressive drug coverage for the lifetime of kidney patients is a cost-effective way for the federal government to increase the value of health care by improving clinical outcomes for those with ESRD while avoiding the costs of resuming dialysis and allograft failure. Low-income kidney transplant patients currently suffer heavy financial burdens and are denied access to transplant relisting because of their inability to pay for critical drugs. There is a clinical, economic, and moral imperative to, at long last, bridge this coverage gap—a gap that lies at the core of effective transplant care and detracts from the movement for comprehensive coverage begun by the Affordable Care Act.

Transplant Living http://tinyurl.com/brwj3je  suggests you contact your Senators and Congressional Representatives to urge their support of the measure that would extend anti-rejection medication coverage from 36 months to lifetime.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind 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 more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 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 recipients, I respectfully request your support of this legislation.

Sincerely,

 

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

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

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

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

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

The Future Of Organ Transplants — No Waiting!


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

              By Jeremiah Zagar                  Posted 02.29.2012 at 2:04 pm                  9
       

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

Feature

No Pulse: How Doctors Reinvented The Human Heart

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

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

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

Japanese Researchers Create a Pituitary Gland From Scratch in the Lab

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

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

Feature

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

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

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

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

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

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

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

Lab Builds a Fully Functioning Artificial Small Intestine

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

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

Diabetes Researchers Report New Steps Towards the First Artificial Pancreas

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

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

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

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

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

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

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

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

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

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

“His” Heart, My Life, My Story


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Help Your Caregiver — Get Your Own Glass of Water


When you are very ill or recovering from a serious illness or surgery our caregivers (spouses, partners, friends, relatives) have a most difficult task.  Being a caregiver can be physically and emotionally draining and strange as it may seem the patient may sometimes have to offer care to the caregiver.  Care in the form of consideration and gratitude.  Remember the expression, “When mamma’s happy, everybody’s happy?”  Same goes for caregivers.

As a heart transplant patient with a wife who would do anything for me and did, I can now reflect on my recovery period and easily see the number of mistakes I made as she tried so hard to meet my every need, and take care of the house while running two businesses.  To this day I have no idea how she did it and I will be forever grateful.  My ruminations on the subject led me to write the following advice to others who may be in the same situation now or who could be in the future.

Make it easy on your caregiver if you want to do what’s best for you.

  1. Do as much for yourself as you possibly can. If your physician says you can get up and walk around do it as often as possible. Get your own glass of water.
  2. Learn your meds. Know what they look like, what they do, how often you take them and when they must be refilled and do all of it yourself.  Plan ahead for refills and find a pharmacy that will deliver to you on short notice so no one has to go running after prescriptions at the last minute.  You can do it sitting and you don’t need a caregiver to do it for you.
  3. Know your condition.  When you talk with your doctor or coordinator take notes.  It is your job to know about your health you cannot and should not depend on someone else to “remember what the doctor said.”
  4. Make your own meals but be sure they are nutritious. You either just got a new organ or you are about to get one. Don’t cause further problems by eating and drinking the wrong things.
  5. Only ask your caregiver for things you absolutely can’t do for yourself. If you can’t drive, you may need a ride or the caregiver may have to run errands for you.  If you are on medication that causes some mental confusion or fatigue your caregiver should be involved such as in dealing with legal papers, insurance etc.  But you should take over these responsibilities as soon as you possibly can.
  6.  If you have children, especially young ones, you may not be able to get involved in strenuous activities. The Children need to know this and your caregiver may have to take on some of this responsibility…for awhile.
  7.  Before making any request of your caregiver ask yourself this question, “Am I taking advantage of my caregiver by asking — is this something I can do myself?”
  8. Show gratitude and consideration. Taking care of another person can be emotionally and physically exhausting. Tell that person how grateful you are and ask what you can do to make it easier on them.  Every once in a while, get a glass of water for the caregiver.

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

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

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

The Arizona 98 — The Full Story


Since October I’ve been leading a national Facebook campaign to save the lives of the 98 Arizonans who were promised, then denied Medicaid coverage for organ transplants by the legislature and governor Jan Brewer. They are only on Medicaid because their conditions have made them too sick to work and too weak to raise the money needed to save their lives. They are powerless, helpless people for whom the Governor has absolutely no compassion. She has not offered any words of sympathy, any support in helping to raise money or even to meet with them. She simply says, “We don’t have the money” and blames so-called Obamacare for the Arizona mess. But, the fact is that the Arizona legislature passed and she signed the bill BEFORE the Obama bill even passed congress.

That isn’t the only mischaracterization the Governor has made. She has received over $1 billion in federal stimulus funds, $30 million of which is discretionary; she can use it any way she wants to. She says all the money is spoken for, but she refuses to tell anyone what she will spend it on, she won’t even talk to the media. Strangely she found $2 million to study algae and another nearly $2 million to repair a roof. Voters even approved nearly $100 million for a spring training facility for the Chicago Cubs. By cutting the Medicaid funds that would have paid for these people’s transplants the state will save between $1.4 and $4.5 million out of a nearly $9 billion budget.

Governor Brewer has fudged on other issues as well. She says transplants don’t work, that they are optional. Well, I can testify that they work and so can thousands of other people. As to it being optional the only option for someone who needs a transplant is death. You cannot be certified to be listed for a transplant unless a physician who specializes in your particular illness convinces a hospital transplant committee that you will die unless you get a transplant. Brewer also says the state still covers liver transplants but that, too, is not true. They Don’t. One of the 98, Francisco Felix, was on the operating table being prepped for a liver transplant donated by a relative when the order came that the state wouldn’t pay for it. He was awakened, sent home and his relative’s liver was given to someone else. Can you think of anything more cruel?

Several well known, highly respected transplant experts have contacted the governor telling her that the information she used to make the decision was outdated, erroneous and incomplete but she has refused to acknowledge them and continues to use the same wrong information as she did just recently on Fox news with Greta Van Susterin.

The Arizona Legislature meets on January 10 to reconsider the action and while Republicans have an overwhelming majority some GOP leaders have suggested that perhaps they were wrong and should reverse their previous decision, so there is a good chance of reversal even though the Governor refuses to change her mind. That means that we must put pressure on the legislature to pass a veto-proof bill that will return the transplant coverage to the Arizona 98. All we are asking for is that the state honor its promise.

I would ask you to do these things.

1) Write to the Arizona Senate Majority leader and the Speaker of the House urging them to restore Medicaid transplant coverage (I have no names for these people because they will be selected when the session begins).

2) Get on Governor Brewer’s Facebook page and using logic and diplomacy, urge her to change her mind.

3) Join my Facebook group, Organ Transplant Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 The more members we have the more clout we’ll have with elected officials and other decision makers, so far we have nearly 800 members.

4) Spread the word. Tell everyone you know about the tragedy unfolding in Arizona and ask them to take action by contacting elected officials but also by telling their friends through the use of social networks, blogs, email and whatever else they can think of. .

5) If the legislature doesn’t change its mind the 98 will still need transplants so I have started a fund drive, “Save the Arizona 98” through the highly respected National Transplant Assistance Fund (NTAF). If you go to www.savethearizona98.com you will find a link where you can purchase T-shirts and other products with the Save the Arizona 98 graphic on them. ALL profits will go to the NTAF and there are no administrative fees or expenses charged for our service. The Link also offers an opportunity to donate directly to NTAF and designate exactly who you want to help. When you enter the site you will see a large “Save The Arizona 98” sign. You have permission to download, distribute and use it in any way that will help save these lives.

Please help in this effort. Right now Arizona is the only state in the union that has denied organ transplants for Medicaid patients but other states aren’t far behind. We must send them a message that Americans won’t stand for letting our neighbors die.

If you believe in keeping promises, helping the sick, equal treatment under the law and preserving life, this cause is just right for you.

The only obligation any government has is to protect its people. It is in the U.S. Declaration of Independence and in the Preamble to the constitution. Will you help?

Thank you from the bottom of my donor’s heart.

Bob Aronson

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

Also…visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

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