| Heart Transplant: A Patient's Perspective Taavi Kubits Purpose In 1997 I had a heart transplant. This is the story of my going through end stage heart failure, transplant evaluation, waiting, transplant surgery and recovery, and life afterwards. It is an overwhelming experience, but one of the best weapons against fear and uncertainty is knowledge. Your experience may be nothing like mine, but this is what happened to me and what I have learned. Before CHF Although it seems to confuse many people, the name Taavi is masculine. Born in Tallinn, Estonia in 1943; right in the middle of all the excitement. Our family finally made it to America in 1949. . I hired on with Univac in 1968 and remained with them for what seems like forever. The company went through various reorganizations and exists today as Unisys. I traveled around fixing mainframe computer systems for 10+ plus years, and even had my appendix removed in Switzerland! The traveling finally got to be too much for me. My health was starting to fail although I did not realize it yet. I continued in a series of desk jobs in both hardware and software until I had to go out on Disability in 1995. My Health My heart problems began with rheumatic fever at age 10. I seemed to recover ok but was left with a murmur. I had my first heart cath in 1967. It was quite a big deal then, including 5 days in the hospital; things sure have changed over the years! I found out in the mid '70s (by reading an unattended file, not by being directly told) that I had Cardiomyopathy. I slowly deteriorated through the 1970s and '80s and got much worse about 1990. I couldn't breathe lying down, stairs were a major effort that had to be planned for, constantly nauseous and exhausted, and I got hauled out of work once on a stretcher. My weight dropped from 242 to 165. Then I also went into atrial fribulation in 1992. 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\'92t 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 I'm not going to attempt to describe all of the medical procedures involved - that would take several thick books in itself. An excellent source for descriptions of cardiac procedures is Jon's Place. Please look in the list of links for the URL. Day 1 Mid-January, the coldest week of the year! - Walked to the first appointment but it was decided to transport me via wheelchair for the rest of the week - Got the schedule and about a ream of other paperwork - Had MUGA (Multiple Gated Acquisition) - series of 3 scans with dye, each about 5-10 minutes - Met with my transplant coordinator and she outlined who was who in all this - Blood tests - they used a whole basket of tubes - Started 24-hour urine collection. Ever carry a gallon jug around all day? - Three "patch" tests for TB (tuberculosis), mumps and some sort of yeast test for control - Series of x-rays of chest, spine and hips - EKG (electrocardiogram, same as ECG) - Pre-catheterization interview where they went over what they would be doing tomorrow - right heart cath, pressures, etc. Day 2 - Off to the cath lab. A quick blood test showed that my protime was still too high, meaning I might bleed too easily - Changed plans to go in through my left arm instead of my neck because of the possibility of bleeding. - The cath went very smoothly. As happens at teaching hospitals, the room was full of people - They did a resting blood test. I'm not really sure what they were looking for since I was still groggy from the cath - Then I spent hours taking various psychological tests, including a MMPI - Met Dr. Kubo, my transplant cardiologist, and what seemed to be a cast of thousands - Pulmonary function tests (lung function) and was then done for the day Day 3 - Started the day with an echocardiogram - My next meeting was with a neuropsychologist - whatever that is - for more tests - I met my social worker and she explained her part in all this. She also covered what would be needed post-transplant. I would be monitored 24 hours a day for the first 6 weeks. We went over who would be looking after me, etc. One of my sisters-in-law is a nurse and she ended up being the de facto coordinator from our end Day 4 - Met with a dietician. They want me on a low-fat, low-cholesterol, low-salt diet. This wasn't much of a change for me except for the salt - Attended a heart transplant support group meeting. I met several people with heart transplants and found that they looked just like "normal" people, which was very encouraging! This group later became one of my primary sources for getting any and all questions answered - Lengthy meeting with a neurologist. I had problems with a tremor but it was decided that this would not disqualify me - Met Dr. Shumway, my surgeon-to-be. We went over the surgical process, recovery needs, follow-ups, etc. Dr. Sara Shumway is the daughter of Dr. Norman Shumway, one of the pioneers in heart transplant history. He performed the first US heart transplant, at Stanford. - Stress test! Really worked out on the treadmill. When the test was complete, it took me about an hour to stop shaking. You really should have a ride home after all that effort - Met the chaplain. I am not a religious person but he wanted to say hello anyway and we ended up just shooting the breeze for an hour Decision time Day 5 - Met with Dr. Spencer Kubo (my transplant cardiologist) and various other doctors that I couldn't keep track of The test findings were explained and options for the next steps were explained. The bad news is that I am a candidate for a heart transplant. The good news is that I'm an "excellent" candidate for a transplant. The decision was not hard for me since I already knew that I would die without a transplant I received a transplant handbook - a sort of manual - and went over parts of it. Lots of procedures and tests were discussed The official diagnosis was Idiopathic Dilated Cardiomyopathy and my EF (Ejection Fraction) was 15%. I now get to start (slowly!) an exercise program. Walking is considered ideal exercise Dr. Kubo totally reworked my drug regimen; dropping or adding various drugs and changing dosages on others. One problem he saw was that I had lost about 60 pounds, which threw off the dosages I had been taking. These drug changes made a tremendous positive change in how I felt over the next several weeks. I also signed up for several studies/trials they were doing 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 to check on a possible ulcer. 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 20:00. 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 22:00. As it was now nighttime, 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! 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 04:00 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. Even getting the mail was 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: 09:00 and 21:00. Whatever the schedule is, it must be followed exactly. The side affects from all this was 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 took Zantac for nausea for a while, but was eventually able to stop this. 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. 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 my new heart is doing well (EF = 65%), the same cannot be said for the rest of me. I am described as "profoundly functionally impaired." 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. Cancer In February of 1999, I was diagnosed with prostate cancer. It was caught with a routine PSA test; no symptoms, normal DRE, just the PSA creeping up. The biopsy was positive. As I'm considered a poor risk for major surgery, I chose to go with external beam radiation and hormone/chemo therapy. I completed eight weeks of radiation (what summer?), continuing with 6 more months of Lupron Depot shots. We are now monitoring the PSA levels and waiting to see if it is gone for good. Time will tell. Keeping busy When I had to stop working, several people inquired how I dealt with boredom. This is not a problem! Between sleeping, reading, music, the Internet, and forcing myself to exercise, there is not enough time to get everything done. My general attitude has changed considerably, and I am enjoying life more now then I ever did before transplant. If I were to write a paper on this, I would say that successfully making it through transplant boils down to: Attitude: Yes, I can make it! Yes, I have something to live for Knowledge: Know your body, drugs, tests, what is being done and why Adjustments: Less sodium! More exercise! Look after that new heart. A saying in our support group is, "You have traded death for a lifetime of medical management" Support: Family, friends, church, transplant community - you can't do it all yourself Sense of humor: This may seem unlikely, but people who laugh seem to do better 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. Your experience, of course, may be nothing like mine If there is any other area that you would like to see covered here, please let me know. Taavi Kubits March 17, 2002 Heart #346, University of Minnesota I am not employed by, nor do I represent in any way, the University of Minnesota Copyright 2002 Jon's Place - THE place for patient-centric heart failure information http://www.jonsplace.org/ Second chance For Life Foundation - the support group I belong to http://www.secondchanceforlife.org/ United Network for Organ Sharing http://www.unos.org/ Transplant Web http://www.transweb.org/ Doug's Home Page - fellow transplant #333 http://www.doug.bassguitar.com/ Please sign my Guest Book |
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