Suppose you are scheduled for testing at a transplant center and this testing will determine whether or not you are chosen to be on the wait list. You can expect to go through rigorous testing.
The testing will include a conversation with the center’s psychiatrist, who will decide if you are mentally prepared for the Transplant and the wait and the recovery. You will meet with a coordinator who will do his or her best to instruct you about how the organs are awarded.
You will also meet with a sociologist who will tell you how the time on the wait list can best be served. The familiar ring is to get the most out of each day. For me, that was a cyclical issue because I would go through periods where I would do more than I thought possible and a few days later I would not be able to lace up my shoes.
You will meet with a financial consultant who will request your health insurance coverage. The consultant will also advise you as to the overall expenses of transplantation.
Another meeeting will be with a neurologist. If you are headed to the wait list, this will be nerve-wracking. The neurologist will ask questions; questions that you know the answer to but just don’t come to mind at that moment. For me, this was very deflating. It demonstrated that my cognitive powers were on the decline. At the end of our meeting, the neurologist said not to worry because after the transplant my memory would return.
What surprised me was how limited my short-term memory was. I could remember details from my past but unexpected faces left me filled with angst. Now, I introduce myself in advance by giving my name and hoping the person I know responds in kind. Things are better today than after the transplant but I am a bit dim.
At some point, you will meet with a pulmonologist. You will sit and go through some regular breathing activity. You might next be asked to inhale and exhale through a tube. At the end, the pulmonologist will ask you to sit in a closed booth. You will follow a bunch of commands while a machine reads your lung capacity and difficulty with breathing.
For me, this test was like climbing a mountain. I am not sure I ever finished that test. I felt dizzy and off balance whenever I stopped. Because I now have a pulmonary embolism, I have recently taken this same test. Disastrous! In one minute, exhaustion won out and I started to fall asleep.
Of course, during this pre-wait list stage, you will have numerous blood draws. If my memory serves me, I believe I also had a stress test where a mask with a tube is placed over your mouth and nose and you then begin to exercise on a treadmill.
I felt a little claustrophobic but was going along on the treadmill at a steady pace. When they elevated the treadmill’s path, I had to stop. Even now, inclines are a problem.
You will meet with a dietician who will advise you not to eat at the busiest hours. She will also give you a list of recommended foodstuffs and remind you to take salt off the table. We literally swept the cupboards clean and start reading every label in search of salt – sodium. Suzanne and I cooked everything from scratch I reached a point where when we did go out, all I could taste was the salt.
At some point you will be asked about your support team. This request may come from the cardiologist an assistant. The requirements were spelled out very clearly and we had our plan in place. Of course after two years of waiting, things change. However, my bride was a pillar of strength both before the transplant and after.
However, Suzanne despises needles. So when blood draws were on the docket, she would remain in the waiting room. When they told her that she would be injecting me with insulin, she nearly fainted.
After all the other testing is done, the cardiologist will perform a left and right heart catheterization. The entry point is the groin.
The transplant committees seem to meet on Thursday. In that meeting your statistics and comprehensive report from all interviewers will be presented. You will be placed on the wait list or told that your time has not come yet. Everyone on the heart transplant list has congestive heart failure and is in end stage heart disease.
You will also be made aware of the hospital’s policy regarding scoring on various tests. If your ejection fraction is a too high, you will not be admitted. Most hospitals accept patients with EFT’s of 19 or under. With an ejection fraction of 19, you will still be able to perform certain things.
When I was accepted at Columbia Presbyterian, my EFT was 18. When I was accepted at Tampa General, my EFT was 15. The week before my transplant my EFT was less than 1 percent. It seemed that every time I had a catheterization, I ended up in the hospital and being intravenously fed Milano. I responded well to this medicine and would be on my feet and feeling much better after a couple days.
When I was accepted at Columbia, I called a physician friend and asked what questions I should ask about the program. He did not hesitate. I used the same questions at TGH.
Question 1 – What is your success rate off the table?
Question 2 – What is your survival rate after 1 year?
Question 3 – What is your survival rate after 3 years?
Question 4 – What is your five-year survival rate?
Question 5 – What is expected of me while in the program?
Because TGH accepts transplant candidates up to age 70 and Columbia Pres accepts patients up to 65, this was not an apples to apples comparison. However, one thing I came to realize is that heart transplant centers know their numbers, which I think are used to evaluate the center’s success rate.
At TGH, the off table survival rate was 87 percent. The survival rate after one year was 84 percent. The three-year rate was 77 percent and the five-year rate was 74 percent. I believe these were the figures given to me but you should know this information.
I was told that the transplant recipient preceding my surgery did not survive the table. I never confirmed this but a nurse mentioned it. In any case, I liked knowing these figures so I could make the most informed decision possible. These are questions you and your family should know.
As my son said, “Let’s look at it from the other side. What are your chances of living five years with the heart you have? And, what will the quality of life be like?”
For me, the 13 percent on-table fatality rate was interesting. I knew that if I could survive the table and the first year, I would drive myself past the five-year mark. I told Dr. Hoffman, I would be her best success story. I’m not sure that worked out, but I am still kicking and kicking a little harder every day.
In answer to “what is expected of me?” Dr. Hoffman said COMPLIANCE! And, she meant it. That means blood pressure and heart rate readings twice a day. That means taking the exact strength of medicine at the exact time everyday.
It also means take care of yourself. When you are tired, rest. When you have energy, walk. Eliminate salt from your diet. Do not drink more than a liter and a half of liquids, including anything that melts, per day. If you smoke, stop. If you use alcohol regularly, stop.
Do not miss any doctor’s appointments and call if you have a temperature over 100 degrees and if your heart rate starts to spike. I Compliance is the key word here. Heart transplant patients who have a history of non-compliance with medicines will not receive organs.
After being accepted for the wait list, I was given an informative booklet. That really did help me understand what was going to happen. I suggest your caregivers in your support network also read the booklet. Best of luck!