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Real People With New Hearts

If you have had a heart transplant and would like to share your story here, please e-mail me

 

Taavi Kubits
More about Taavi's experience at www.geocities.com/ehtlibahunt/transplant.html

My primary care doctor first referred me to a "consulting cardiologist" for a second opinion. This was an HMO requirement. The appointment seemed to be as much an interview as an examination. It was encouraging because he described what we were going through as a decision-making process. Up until now, my regular doctors seemed to taking it for granted that a heart transplant would be needed. It was agreed that I would go through the full formal transplant evaluation at the University of Minnesota.
     Before my transplant evaluation, I hand carried a copy of my medical records to the University so they wouldn't get lost. All the HMO paperwork also had to be approved in advance. The evaluation schedule called for 5 rather full days of tests. Since I was still working, I had to take vacation time. While I was not told to bring someone with me, I would strongly suggest that you do so. The week was so tiring that I'm sure I missed some important points. The moral support and encouragement another person might have provided would have been great. The evaluation process is pretty overwhelming

Day 1 Mid-January, the coldest week of the year!
I walked to the first appointment but it was decided to transport me via wheelchair for the rest of the week

Day 2

Day 3

Day 4

Day 5 - decision time

I was quite impressed and rather overwhelmed by this evaluation process. Everyone seemed to know what they were doing and everything went like clockwork. While the formal evaluation was now over, testing did not stop. I had other tests over the next several weeks including visits to a dermatologist, another neurologist, and an endoscopy.

The Call

My total wait came to almost 41 months but somehow I kept out of the hospital and never quite went status one. This would not have continued much longer since I was getting worse pretty fast. First came 2 dry runs. A dry run is when you are called in for a transplant, but at the last moment it is called off. This usually happens when a problem is found with the donor organ at the last minute. The first time I got all the way to pre-op, the IV lines were all in, and they had already started the anesthetics. As I was so loaded up with various drugs, they kept me in the hospital overnight, just in case. I didn't know whether to be disappointed or relieved. The second time we went through all the blood tests but I did not make to pre-op before the transplant was called off. This time it was very depressing.
     The real call came a few weeks later at about 2000 (8:00 PM). All three of the calls came in the evening, at home. Despite carrying a beeper for years, I was always contacted by telephone. This time, the transplant coordinator said not to leave home because they weren't sure yet, but there might be a heart for me and she would call back in 2 hours. I immediately called my brother's family and put our transportation plan into motion. A hour later the coordinator called and said "Come on down!" There was not a panic but they wanted me there within an hour (it's a 20 minute drive).

Before Surgery

I checked into the hospital about 2200 (10:00 PM). As it was now night time, I went in via the Emergency Room entrance. The nurse at the desk seemed rather bored as she watched me walk in under my own power, but when I told her I was there for a heart transplant, things speeded up considerably! <g> They took me up to a hospital room immediately. We didn't even go through all the registration paperwork. there were lots of blood tests and a urine sample (do not pee before going to the hospital when you get the call!). I had to take a shower, scrubbing from head to toes with a disinfectant. I was also given a heavy dose of Sandimmune and various other drugs. Then it was sit and wait.
     At 0400 (4:00 AM) on June 6, 1997, we got the green light and things started to move really fast. I was taken down to the pre-op area, all the IV lines were put in and the drugs were started. There was no waiting or fooling around now. I suspect one of the reasons there was such a flurry of activity was so the patient and family did not have time to worry. I waved goodbye to the family and off we went. As I was placed on the operating table I was thinking: Well, this is either where they fix me or kill me. The only thing I remember about the operating room is how cold it was.

Waking Up After Surgery

I was in surgery from 4:00 AM to 10:00 AM. A half-hour after coming out of surgery, I woke up abruptly in the recovery room. This caused quite a stir (He's awake! He's awake!) since they were expecting me to be out for hours. The overwhelming feeling was euphoria. I was alive, knew where I was, and was already breathing better than before surgery. Of course I was also loaded to the gills with numerous drugs. Fortunately I had been told what to expect as far as postoperative conditions: wrist restraints, breathing tube and so on. I can certainly see how frightening this would be to someone waking up unprepared.
     After a couple of hours, it was decided that I was sufficiently coherent and my hands were untied. Communicating was quite a challenge since I couldn't talk due to the breathing tube and I couldn't write; I was too shaky. I also learned that it's a really bad idea to laugh with a breathing tube in place! Numerous people, mostly doctors, kept stopping by on what almost seemed to be a tour. Dr. Shumway, my transplant surgeon, visited several times and commented on how good the new heart looked and how much extra room she had to work with due to my old heart being so enlarged. The breathing tube was removed that evening.

Recovery

Reality set in the next day. Blood sugar went out of control and I was put on insulin. Then my kidney quit and they had to do dialysis. I was told problems like these were not uncommon immediately after a heart transplant and that they should hopefully be under control in a few days. At one point I woke up and heard harp music. This was quite startling and I lay there with my eyes closed for some time while I worked up the nerve to look around and find out just where I was! It turned out I was still in ICU and there really was someone there playing a harp. I later found out she was a volunteer known as "The Harp Lady" who does this periodically to entertain and relax the patients. The music was appreciated, but for a few moments,...
     I was moved to the regular cardiac unit that evening. They also had me out of bed and standing, with a lot of help, on my feet. I needed one more session of dialysis and then my kidney function returned. My blood sugar also kicked back in and I haven't needed insulin since. Pain was not a problem. The chest tubes bothered me more then the main incision, especially when getting out of bed. There were various aches, which were caused by having had my whole rib cage cranked open, but I used very few pain pills. Several people had forewarned me about how painful it would be to have chest tubes removed, but I found it be more uncomfortable than painful.
     Training on my medications started quickly. First it was going over what the various drugs were when they were administered. Then all the drugs were brought in a big tray and I had to pick out which meds were needed at what time. A nurse would then go over my choices before I took any of them. After a couple days of floundering, I caught on and it became no big deal. I also attended a couple of classes on medications and post-transplant care.
     Getting enough nourishment was a problem for the first few weeks. For some reason my sense of taste had disappeared. It came back slowly over the next few weeks. Not being able to taste anything, accompanied by some nausea from all the drugs, took away all my interest in food. They had to put me on supplements to get enough calories into me - a definite first for me!
     Cardiac rehabilitation began immediately. First it was just getting me out of bed and taking a few steps in the room, but by the time I left the hospital I was able to walk the length of the hallway. About a week after surgery, I had an echo and biopsy. I kept thinking of this as the final exam. The echo showed an EF of 67%, and the biopsy measured my rejection as zero and inflammation as zero as well.

Checking Out

Ten days after surgery, I went home. Surprisingly, this was just as scary as going into the hospital. You get used to all the security represented by the hospital, and then you're out on your own. Since I live alone in a two-story house, we had decided to set up a "hospital room" on the first floor. We rented a hospital bed and wheelchair, which we ended up keeping for 2 months. The furniture was moved aside and we just set up in the living room. This turned out to be good planning, as I was not capable of going up a flight of stairs for several weeks. Yes, there is a downstairs bathroom.
     I required less physical assistance then any of us had assumed. I could get out of bed, get dressed, and so on by myself. However, there is no way I could have made it through the recovery without assistance. Cooking, cleaning, and even getting the mail were beyond me. And, of course, there were all the clinic visits.

Maintenance Meds

At first I was taking various meds 5 times a day and it seemed like I was running my own pharmacy. The frequency and dosages tapered down until I reached my present twice a day meds schedule: 0900 (9:00 AM) and 2100 (9:00 PM). Whatever the schedule is, it must be followed exactly. The side affects from all this were very noticeable. I had a bad tremor from the heavy doses of Neoral, abrupt mood swings from the Prednisone, and nausea from everything. Whoever is helping you had better be prepared for the mood swings; they can be very disconcerting. All of these effects lessened with the tapering of my dosages. I still have occasional touches of nausea, but I take Zantac for this and it isn't a problem. The amount and severity of medication side effects vary greatly from person to person.
     As the other drugs have improved, many transplant programs have moved to taper Prednisone dose down very aggressively. If there is no rejection, many people are totally off Prednisone in 6 to 12 months. I was off in 11 months. The most visible side effect is of course the "Prednisone puff." How this affects any one person varies wildly. A few people puff up immediately and prominently, a few have no reaction at all. I had some slight puffiness that didn't show up until month 3 and was totally gone by month six. Since I have a full beard, most people didn't notice any change at all. <g> Note that Prednisone has other side effects that are less visible but just as bad, including hunger, mood swings and severe bone loss. I was very happy to get off it.

Adjusting To The New Life

At first, clinic visits were twice a week and biopsies were weekly. The medications were adjusted at every visit (per numerous blood tests) and I soon learned to keep the drug charts in pencil. I was, and still am, keeping a daily log of my weight, blood pressure, and pulse rate. If my weight went up, I would hear about it since it usually meant I wasn't watching my sodium close enough. Yes, I did learn to watch it! The clinic visits and biopsies also begin to taper off after the first month.
     Cardiac Rehabilitation was also twice a week, coordinated to be on the same days as my clinics. This consisted of stretching, treadmill, stationary bicycle, arm ergometer, and light weights. The sessions were, of course, tailored to the individual patient's needs. My experience here was not typical. Most people seem to go through rehab in a month or so. I was in cardiac rehab for 5 months and then in physical therapy for another 4 months. At that time we had reached a point of diminishing returns and stopped the sessions.
     Four weeks after going home, I was given clearance to drive. This greatly simplified the schedule for the rest of my family since I could now make my own way to clinic, rehab and support meetings. I did, however, still need help with grocery shopping and anything else requiring lifting for several more weeks. Now I only need to catch a ride for my annual visit since this includes a cath and driving after that is not permitted, for very good reasons. When I started to drive, I found other traffic to be very unnerving. I kept wondering how my wired together chest would fare in an accident.
     Since I live in the same area as the clinic, the logistics for all this were not too bad. Patients from out of town have to remain in the area until everything settles down and this can be a real hardship for a family.

Life After Transplant

Just as in regular life, life after transplant varies considerably. Speaking just from personal observation within one program, it appears that about half of the transplant recipients go back to work. Some were already retired and others take the transplant as a strong sign that they should retire. A few like me never regain their strength and of course, some die.
     Doing most things is possible. People with heart transplants have run marathons but this is a rather extreme example. Amongst the transplant recipients I know, several have traveled all over the world, including to China and on cruises. Some have gone back to school and gotten a degree. They have seen their children and grandchildren grow up. They go hunting and fishing. They have returned to jobs as diverse as lawyer or hog farmer. While severely limited in what I can do, I still consider myself very lucky. It's amazing to be alive after having been told several times that I was going to die. As long as I remain within my limits, I feel mostly ok. It feels great to be able to breathe!
     Can it be done? Yes! Is it worth it? Yes! Is it easy? No! Would I do it again? In a heartbeat! Keep in mind that all of this - from heart failure to evaluation to waiting to transplant and beyond - is just as hard on your spouse and the rest of your family. Sometimes you are just along for the ride, but they have to deal with the reality day after day. The dynamics of the family will change while you are ill and then will have to readjust again after you are well.
     If I were to write some sort of paper on this, I would say that successfully making it through transplant boils down to:

I am certainly not a doctor, nor any sort of medical person, but I have made it through the process and meet frequently with other transplant recipients, and I have no lack of opinions.
 
Taavi Kubits
Heart #346, University of Minnesota
Kubit002@tc.umn.edu
Despite my e-mail address, I am not employed by, nor do I represent in any way, the University of Minnesota

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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