My problem is pulmonary hypertension. Im 46 and just found out. Ive had it for over a year now amp; my? -

Dr never told me. I found out by getting a 2nd opinion. My pulmonary BP is 41. I m SOB all the time. I will see a pulmonary Dr next week. I read some scary things about this. When does a person go on a list for a heart/lung transplant?(I also have severe tricuspid regurg. after mitral valve repair surgery) Please help!

I m not a pulmonary hypertension expert, but I did have a bi-lateral lung transplant on 08/26/04 due to Cystic Fibrosis and know that there were a number of patients at my transplant center that have/had pulmonary hypertension. It used to be that lungs were allocated based on length of wait time on the list and whether or not the patient was actually quot;sick enoughquot; at the point they reached the quot;topquot; of the list. I know it sounds weird but given that transplant is a major surgery and does require some life style changes it s really a last resort so they want to be sure patients are well enough to survive the surgery but sick enough that there are no other treatments available. Since my transplant the allocation policy has changed and viable organs go to the sickest person within the associated geographic area that is able to survive the surgery. Since lungs are an oxygen requiring organ the more time they are out of the donors body the less viable they are so they are generally limited to certain geographic areas. For example, my transplant was in St. Louis but my lungs came from somewhere in Tennessee. Lungs from New York, however, wouldn t be flown to California because of the length of time they would be un-oxygenated. Lung/heart transplants can be a little more challenging than just lung or just heart transplants and the transplant centers generally prefer to obtain all the organs from the same donor. That s not always possible, however, and it is possible that you undergo one surgery for lungs and one for the heart. Your pulmonologist will have to refer you to a transplant center for evaluation. You can expect roughly 3-5 days of tests that basically check everything about you physically, mentally, socially, and evaluate your capability to pay for the transplant, post-transplant care and the on-going (expensive) immunosuppression medications. If you get turned down by one center don t give up - each has similar guidelines but also the ability to set some of their own (such as age...and 46 should NOT be near the exclusion age). You want to find a center that has a high number of transplants and can represent good surgical, one year, three year and five year statistics for survival. Personally I recommend Barnes-Jewish Hospital/Washington University in St. Louis, MO but you do have to consider the effect of short-term relocation if you are not within 2 hours of the hospital. You will also need a care giver to stay with you 24/7 after the transplant for usually a 90 day period after the surgery. Transplant is a lot to absorb but it is a wonderful miracle and everyone I know that has had one would do it all over again. You might want to check out 2ndwind.org which is a transplant support organization for both pre- and post-transplant patients and their families/friends. Best wishes.