FAQ:
How fast does this happen? When the phone rings we start moving toward Tampa General Hospital - they are still checking things out so we need to get there in a two-hour window.
So, travel is off? Yes, while listed, I need to be within two hours of TGH. No Gator games, no overnights out-of-town. Well, I can but I need to let them know and will be temporarily de-listed, so not a good plan.
Is the heart in a cooler being jetted towards Tampa? No. Most donations come from the same region - many tests must be done on the donor organs prior to use.
What if the donor organ does not measure-up? Well, I keep my current heart and go home to wait again. I may be at TGH for hours waiting. It depends on the donor situation and the organ. Nothing to eat or drink after the call, of course.
How long does the operation take? Four to six hours. The shorter, the better. The donor heart is chilled but will live quite some time awaiting transplant - unlike other organs.
How long are you in the hospital? Typically 10 days or so. It begins with the transplant and then ICU isolation for a few days of close monitoring. I'm out of it for the first couple of days on meds. Vickie can look at me through the glass. Then recovery in the hospital and a three-month convalescence at home.
How do they check on you? I have to be going to TGH three times a week at first. I can't drive, so Vickie and our support team of friends will take turns. Drive me there in the morning and pick me up in the afternoon.
What should I feel like? Post-op: drugged. In hospital: still drugged but weak. Initial at home: sore (duh!) with improving strength. Six months out: improved. One-year: like a teenager!
How long will you be on anti-rejection meds? For life. Prednisone steroid treatment for sure so diet is key to keep from swelling up like a basketball.
How long can you live with the donor heart? Average is 14 years. There is no reason that a compliant recipient can't live 30 or more years. Averages are brought down by poor habits, cancer or rejection.
Will you have rejection? Yes. The donor heart (the "graft") will always be alien to my body. There will almost certainly be a major rejection episode in the first year. My immune system must be deactivated to allow the graft to survive. This is a balancing act for the doctors and my body.
What about later? Life becomes more normal after the first year, but mainly because balance has been found in the meds and in a compliant life.
What can you expect to be able to do once the initial recovery periods of 3 months, 6 months and one year have passed? Regain my vigor and recover my body and muscle tone, resume work and play. Have a healthy and active life with few limits.
What are the limits in a post-transplant life? Well, all the things we all should be doing, of course! Eat well but not too much, exercise, don't smoke and don't drink. Is a new life worth this? Ask the one who gained one!
Without an immune system, what keeps you from getting sick? Proper hygiene. Wash you hands, wipe off surfaces, don't mingle in big crowds (face mask when a must), stay away from sick people. Ask family and friends to follow "a few, simple rules". Cuts and scrapes must be carefully tended to but human skin is an excellent barrier to the world.
What about pets? Goldfish - yes. Dogs, cats and birds, not so much. Your pets are great at your house and you know how to wash your hands, so we'll be fine here. I'll mostly ask you to visit us.
Will the graft act the same as your original heart? Yes, and no. The graft will not be connected to my nervous system - the vagus nerve is severed. The graft will beat at a set rate (usually about 100 bpm) that will be controlled by meds. The graft will typically not respond to increased activity by speeding up. Yes, we are wonderfully made - the graft heart has "mini-brains" in it and when filled with warm blood, it beats because it was made to do so. A slight jump-start and it's off and running!
FAQ update:
What about Tampa General vs. "big city" medicine? Great question! TGH is in the top four of heart transplant centers in the entire country in survival rates. All transplant centers submit tons of data on their programs and outcomes and this is published regularly. TGH is the University of South Florida Medical School's teaching hospital as well. http://www.srtr.org/
What is the survival rate? About 93% one-year and 85% three-year; a little ahead of national averages but TGH has a much higher than expected rate of moving candidates to transplant. Their "wait list" mortality rate is two-thirds lower than expected (from national averages). Meaning - you are less likely to die on the list here.
Isn't there a national registry? Yes. UNOS United Organ Sharing Network unos.org is an independent, non-profit organization incorporated in 1984 to provide a fair and effective transplant network. There are 58 regional organ procurement organizations (lifelinkfoundation.org in west, central Florida) all are members of OPTN Organ Procurement and Transplantation Network and regulated by US Dept of HHS organdonor.gov
What was the process to get listed? Basically it is a dis-qualification process. Simply put, the system is set up to keep these most rare resources for only the sickest patients that can survive the transplant process and not be diseased from other illnesses. Extensive testing, scans, surgery, physical, psychological, social and financial examinations are conducted in which each candidate must avoid elimination.
How long did it take you to get listed? Seven months since my cardiologist referred me. Four surgeries, three and three hospitalizations. More blood collected than a vampire would need and a whole lot of tests and scans, even a letter from my dentist.
That sounds harsh, why so tough? If you think about it, there are THREE people who will, or can die from an improper heart transplant. The donor, of course, has died. Nothing that the candidates or doctors can do will change this but, there is a responsibility on both of their parts honor the gift of the donation with the best candidate possible. Should the candidate who receives the organ not be otherwise healthy, not be able to afford the post-transplant medication costs, not be willing to be a lifelong, compliant caretaker of the graft then they will die - the SECOND death. The THIRD death would be the candidate that did not receive that donation.
Financial? Yes. The meds to stay alive will cost $3,000 per month for the life of the recipient. Insurance, Medicare, Medicaid and private funding must be identified in advance and there must be understanding and commitment to buy and take the medications for life. There are just as many poor people as rich people who get organ transplants - the dis-qualifier is the lack of commitment they show.
Does insurance cover any of this? Yes. I have met other patients with private insurance and those of Medicare and Medicaid. Private funds are necessary for the part of the medications that is not covered. Family, friends and fundraising are required in some cases - I should be good with the insurance and resources I have though.
Psych Test? Some people can't handle that: a part of a dead person is in them, that someone had to die for them to live, that they will be on medications for life, that they will have to change their ways, and any number of other mental, thought or lifestyle issues. Commitment again.
Social worker? Transplantation requires a LOT of effort by a LOT of people to be successful. The candidate needs a support network to provide financial resources, transportation, care, feeding, hygiene, cultural, faith and moral support.
Please ask your question and I'll find the answer.
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