Alpha-1 Advocacy Alliance - Emotional Support

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Group Therapy for
The Alpha-1 Patients and Family

The topic June 6, 2007:

Considering a Transplant

        As I am over 65 years old, I can remember when organ transplants were front-page news. On June 12, 2007 I will celebrate having had a lung transplant for fourteen (14) years. And, as such can recall when I first contemplated a transplant upon diagnosis for Alpha 1 back in 1986, that there were not many hospitals doing such surgery successfully close by. Now over 100 medical centers nationwide do transplants as they are no longer especially challenging or experimental.

        I like so many others today felt the miracle of a transplant like being reborn. Today I live a full life with preventive care and vigilance. I can travel, work, and play again. I remember by being in the transplant support group which met monthly at the medical center hearing the stories of others and knowing that the surgery could still involve risks and that living with a transplant could be challenging and sometimes the outcome was not perfect. However, like so many I assumed my transplant would be perfect and that there would be no complications. In my case the surgery was successful but the recuperation period in the hospital went slow due to an overactive physical therapy routine designed by a new physical therapist to a transplant team. However, time succeeded in healing the surgical incision and I came home a new person.

        So let's discuss whether transplant is an option for you at the present time. While surgical techniques for transplants continue to improve, the largest improvement has come about from the development of truly effective immunosuppressive drugs. As an example from 1988 to 1998 alone successful solid organ transplants increased about 71%. According to (UNOS) the united network for organ sharing the survival rates according to LifeNet, located in Virginia where I live is out of 63 lung transplants 96.8% and 123 liver transplants 85.4% survive. Those awaiting transplants increase yearly with over 96,000 waiting some kind of transplant at this time.

        It is always wise to get a second opinion when being advised to get any kind of surgery. You will not hurt the doctor's feelings by questioning the need for a second opinion as say something as drastic as a transplant. Most insurance companies and managed care organizations will pay for a second opinion. Even if the second opinion does agree with the first it does not mean you have to get a transplant. Your autonomy, as an individual, gives you the right to make your own decisions about medical care. Don't be afraid to ask questions. You can only make a good decision based on the facts. A good book for learning how to deal with medical professions is “Working with Your Doctor: Getting the Health Care Your Deserve” written by Nancy Keene.

        For some of us the decision to go for a transplant was easy when the doctor told us that our only hope of avoiding death was to go for it. Because we all do not have an identical twin waiting in the wings to give us that badly needed organ, we will be tethered to the medical system for the rest of our life. Complications from the surgical procedure, postoperative pain, and difficult recovery may be in the picture. Because organ rejection is always a possibility, you'll be taking powerful immunosuppressive drugs that can leave you open to infection and other serious side effects, even cancer.
         Due to the life long use of immunosuppressive drugs there will be a financial burden to consider. The decision to go for a transplant is a lifetime commitment to getting physically fit and maintaining that fitness afterwards. I recall years ago hearing one transplant doctor saying that I would be trading one disease for another by getting a transplant. Yes, I understand that but for me it is worth it everyday of my life to he able to be and do what I now do.

        It is always advisable to weigh the pros and cons by writing them on paper. One of the cons would be the pills you must take daily. Without the pills you would reject the organ however, with the pills, you may not be able to fight cancer or other infections.

        Of course there is always the fear maybe of the operation. Other than the birth of my two sons, I had only been in the hospital when I was twelve and again at nineteen for tests and surgery but at fifty three that seemed years ago. I tried to ignore the fear part by weighing the negatives and positives of the transplant surgery. I was in pretty poor health at the time of my transplant but it was not until after surgery when I could breathe again that I knew really how ill I had been. Such exciting transformations are common. It is wonderful to be a part of that and to come back to life.

        Future sessions will be on the following: 1) Choosing a Transplant Team, 2) How the UNOS System works, 3) The Wait, and 4) Life after Transplant.

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