If you are considering whether or not you need an organ transplant, I would first suggest that you talk to your doctor to make sure all other avenues have been pursued, including treatment options that might have been overlooked or ones you may need to reconsider. Also, I would suggest you start looking into which centers are closest to you. Remember, no center will be the best for everyone. Consider whether you feel comfortable with the program, whether you agree with their assessment of your condition and whether you can live with their average wait. Also the criteria for being put on the waiting list, varies from hospital to hospital. There are no standardized guidelines that need to be met in terms of your diagnosis, your condition, your medical history, method of payment, etc. If one center says no, look at another one. I, myself, have been turned down by two different centers because the pleurodesis I had on my lungs was considered a problem.

I'd also like to mention even though transplantation is a recognized therapy for end-stage organ failure, transplants are not considered a cure. As one doctor told me, "It's like trading one set of problems for another set of problems...hopefully, for ones that aren't life-threatening." Some of the long-term responsibilities of having a transplant include taking immune-suppressive therapy for the rest of your life, which involves large quantities of expensive medications that have numerous side effects, some of which can be potentially serious. Cyclosporine, one of the major immune-suppressive drugs, can contribute to renal disease.(10) And the fact that the immune system has been suppressed to keep the body from rejecting your new organ, also increases one's susceptibility to other diseases. There is a documented increase in the number of tumors in transplant patients, particularly cancers involving the lymph systems.(11)

I think people need to be aware of some of the problems associated with transplants; however, most transplant recipients tell me it's worth the wait and the changes they see in their lives are often for the better. Successful lung transplantation has come a long way since 1983. In the last 10 years, great strides have been made to improve the surgical technique, new medications have been released and detection of rejection is more sophisticated. The national survival statistics for all types of lung transplant patients are at 71% in the first year — more like 80 - 90% for younger, healthier patients. This figure reduces about 5 - 10% a year. Currently, five years out, the survival rate is about 50%.(12) But we can expect these figures to improve as centers gain more experience with the procedure.

So I have a 50% chance of survival after five years. And as my father tells me, "you can put a lot of good livin' in five years!" This is exactly what I hope to do. But for now, I must wait.

For information on how to become an organ donor call 1-800-24-DONOR

REFERENCES: (1) Taylor J, Ryu J, Colby T, Raffin T. Lymphangioleiomyomatosis: clincial course in 32 patients. N Engl J Med 1990;323:1254-60. (2) HRSA (Health Resources and Services Administration) fact sheet, February, 1994. (3) New England Organ Bank (4) Davis Jr. R, Pasque M. Pulmonary Transplantation. Annuals of Surgery 1995, 221:14-28. (5) Davis Jr. R, Pasque M. Pulmonary Transplantation. Annuals of Surgery 1995, 221:14-28. (6) Montoya A, Mawulawde K, Houck J, Sullivan H, Lonchyna V, Blakeman B, Hinkamp T, Garrity E, Pifarre R, and the Loyola Lung Transplant Team. Survival and functional outcome after single and bilateral lung transplantation. Surgery 1994;116:712-8. (7) Chaparro C, Maurer J, Chamberlain D, De Hoyos A, Winton T, Westney G, Kesten S. Causes of Death in Lung Transplant Recipients. J Heart Lung Transplant 1994;13:758-66. (8) Nine J, Yousem S, Paradis I, Keenan R, Bartley G, Griffith B. Lymphangioleiomyomatosis: Recurrence after Lung Transplantation. J Heart Lung Transplant 1994;13:714-9. (9) UNOS Update, Nov. 1995, p34. (10) Davis Jr. R, Pasque M. Pulmonary Transplantation. Annals of Surgery 1995,221:14-28. (11) Chaparro C, Maurer J, Chamberlain D, De Hoyos A, Winton T, Westney G, Kesten S. Causes of Death in Lung Transplant Recipients. J Heart Lung Transplant 1994;13:758-66. (12) Washington University School of Medicine, St. Louis International Lung Transplant Registry, September 1994 report.

Update February 1999 Karen received a double lung transplant from Shands Hospital on January 21, 1996. She is doing great and won two bronze medals at the 1998 US Transplant Games. Karen also published a book, Information You Should Know about Transplantation: Before, During and After.