Joanne Schum, herself a bi-lateral transplant recipient from the United States, has become an ambassador on behalf of people who have undergone transplant surgery. She is an active member of many transplant organisations and is a key player in the promotion of donor awareness.
In each edition of the IACFA Newsletter, Joanne offers readers the opportunity to utilise her experience by answering your queries about the transplant process.
|Editor’s Note: Please remember that just like each person’s experience with CF, their response to transplantation (pre and post) is very individual, as are the CF and Transplant centers’ treatment and assessment procedures / criteria.|
I am a Nursing student writing about CF transplants. I am trying to find information on how many years the transplant patient can expect to survive. I have heard anywhere from 11-15 years. Can you give me a more definitive answer?
I don't want to sound as if I'm looking at a negative aspect of transplantation, my point is to show how long it can increase life for the patient, and show the need for donors.
The surgeons in the US will still tell you the average life expectancy is about 5 years but there are people much farther out. I think the farthest that I know of (with CF), is about 13 years and then a couple of guys who are post lung (non-CF), and 16 years out. I am sure I don't know everyone, but many people pass on this information to me, as they know I am very interested in these statistics.
The UNOS site has some info: http://www.UNOS.org. There is definitely no negative to living even 3 extra healthy years. I think once you have new lungs and experience the good health, only then
can you say "this is worth it even if I only get 1 year out of it". I have lived so much in my five years since transplantation (TX). In fact at 2 years post I had lived so much I would have been fine about it if I died the next day. When life has been so difficult for so long, you just marvel at the way lungs are supposed to work. And when they do, we don't stop taking advantage of living.
Hope that helps.
I have a sister who is 38 years old, with CF. She is now at a point in her life where her doctor has recommended her for a double-lung transplant. Our family is very concerned, and her husband is describing himself like a deer caught in the headlights when it comes to making the decisions of what to do.
I would greatly appreciate ANY AND ALL materials that can be sent to our family on the subject of lung transplantation for a 38-year-old female. She has been working with a hospital out in Birmingham, Alabama for her transplant, and is expected to move out there within the next three years.
Anything you could send regarding the transplant itself, living with the new organ after the operation, mental preparation for surgery, or just keeping your chin up during all of this would be greatly appreciated!!!!
Thank you in advance for any materials you can send.
I was 30 when I was placed on the list for a lung TX and it is the scariest thing I had to do in my life. The unknown always seems so threatening. Also, the fact that CF is taking your independence away more and more is not easy, as people with CF (PWCF) are a determined bunch of people.
Being scared is normal and expected. Your sister has every reason to feel this way and it is really not atypical at all. If she can, she could try talking to a professional who deals with chronic illness to talk through how this is affecting her life. Also, anti depressants may help and most lung TX centers do not look down on that. They like to see a patient that is seeking help to feel better.
Editor’s Note: You might find the following articles of relevance re depression: [edition 62 IACFA Newsletter]
As far as resources in regard of lung transplant, my recommendation is always The Lung Transplant Handbook by Karen Couture. Many lung TX centers feel it is the best out there, with some even giving copies to their patients. It covers the history of lung transplant, the process, the drugs, and other resources. Nothing surgical is shown and discussions are handled sensitively. Many people consider this handbook as a "bible" for lung transplant. Karen Couture's book can be found at http://www.trafford.com/ or go to my book site and there is a link http://www.trafford.com/robots/02.0497.htm
If you have any questions regarding transplantation (pre or post) please send them direct to Joanne:
1104 Bay Road
Webster, NY 14580 USA
Bi-lateral Lung Recipient
University of North Carolina at Chapel Hill
September 12, 1997
Email: luckylungsforjo @ aol.com