Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 I was told when I went through my evaluation at Pittsburgh (and Cleveland Clinic) that the results of all of the tests were only good for 6 months. In other words, whether listed or not, at 6 months they would have to re-do the evaluation testing. Does anyone know if this is the case? Reading Kerry's eval., and remembering all of that stuff myself, I don't want to redo all of that. Since I am still " under consideration " , even though that may change when I see the transplant team on March 18, I am already getting nervous. Just wondering. So far, for my March check-up, they have scheduled PFTs, CTs, blood work and 6 min. walk. In addition, I go every 3 weeks for liver function test and blood draw for potassium check-up. Oh, and I mustn't forget all of the blood work they did during the neurological evaluation last month at Cleveland Clinic. I am giving away more blood than most people would ever donate to Red Cross in a lifetime! Prior to my tx eval. in Pitts., the transplant team sent me a list of about 13 tests that I could have done " at home " with my local physician, rather than doing during evaluation week. Those included the 24 hr. urine collection, pap test, mammogram, hepatitus vaccination, dental clearance, etc. I can't imagine how hard it must be to do all of that in addition to the other tests performed during the evaluation week. I guess I was lucky in that respect. The worst part about evaluation week for me was that I had to have 6 teeth pulled the Friday before my evaluation started. So, needless to say, I was still in a lot of pain on Monday when testing started. I could barely talk or eat or drink anything. On Wednesday during that week, I had to call my transplant coordinator and explain I was in so much pain from the teeth extraction that I didn't know what to do. He sent me to the Dental Emergency Room at the University. They were very sympathtic, but of little help. All that could be done was to give me more pain medicine. Well, as anyone would guess, when it comes to mouth pain, there isn't anything out there that lessens the pain. I just finished the week under duress. It must be ordinary for transplant evaluations to always be screwed up too. Mine was, as Kerry described, modified so many times due to finishing one test before another could be done, and trying not to double-book me for tests, which happened more than once. I couldn't be in two places at one time! I don't know how many times I had to say that! My so-called scheduled was revised, over and over, before the week was finished. But I did get it all done. Now, I can't imagine doing that all over again! Phew....I am glad I got that off my chest. God Bless, Tina IPF 04/07 PH 11/07 Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Hi Tina, After the transplant evaluation and if you decide to be listed they see you regularly, to make sure to are healthy enough for the transplant. I had my lung transplant evaluation in Sept 3 days. Then the doc appointment on Oct 2 , then he asked me if I wanted to listed. I had 9 lbs to less before I was at max weight. I wanted to be under 35 bmi, but he said I could be listed as I had lost 7 lbs, she I said yes. My husband and myself had be praying about this, and I said I do it, if the Lord opened the door. So, my decision was easy, because, God was my decision maker. So I was open to it. My doctor appointment was a Tues and Thurs I call I was listed for the transplant and 8 days I was called at 8:30 PM , I had a later supper, but I got dressed, called my mom and out the door we went. I had my lung transplant at the Un of Penn, and I love the docs there. I had the best care. I did have a stroke during the operation, and then a blood clot in my leg. But all and all, I would do I over again. MY transplant was Oct 13, and I home the Fri before Thanksgiving. I'm so blessed. God is good. I see Dr Kotloff, he is the best and specializes in ipf. Donna In DE IPF 01/1990 trx 10/2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Donna: Thanks for the information. And, yes, God is also my decision maker. If it is meant to be, it will be. That's it in a nutshell. I am ready for whatever happens, whether I am a candidate or not. I hope I am because I want to live a lot longer than the supposed diagnosis, but if I am not listed, that's o.k. too, because that is what is meant to be. I am not a quitter by any means. I too have weight to lose. I was told 50 pounds. So far I have lost 22 pounds, so I am almost half way there. The main transplant doc, Dr. Rozas, at UPMC in Pittsburgh, said he would list me after I lost 20 lbs. But, then my antigen count is extremely high and less chance of a compatible donor, but I am anxious to see what they have to say in March. I was supposed to see the doc in November, but a snow storm kept me home. Then, with the news of the Pulmonary Hypertension, I thought my chances were shot, but I was told that I am still a possible candidate. My coordinator asked me to think long and hard about it, and that I had to really want it. What I realized is I really want to live, no matter what I have to endure, because I have a very young child who needs me and I am all he has. My husband has basically deserted the two of us because he wants to move on with his life, without a sick person like me in the picture. In any event, that also, is what was meant to be. I pray your continued success post-transplant and thank you for sharing your information with me. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > Hi Tina, > After the transplant evaluation and if you decide to be listed they see > you regularly, to make sure to are healthy enough for the transplant. I had > my lung transplant evaluation in Sept 3 days. Then the doc appointment on > Oct 2 , then he asked me if I wanted to listed. I had 9 lbs to less before I > was at max weight. I wanted to be under 35 bmi, but he said I could be > listed as I had lost 7 lbs, she I said yes. My husband and myself had be > praying about this, and I said I do it, if the Lord opened the door. So, my > decision was easy, because, God was my decision maker. So I was open to it. > My doctor appointment was a Tues and Thurs I call I was listed for the > transplant and 8 days I was called at 8:30 PM , I had a later supper, but I > got dressed, called my mom and out the door we went. I had my lung > transplant at the Un of Penn, and I love the docs there. I had the best care > I did have a stroke during the operation, and then a blood clot in my leg. > But all and all, I would do I over again. MY transplant was Oct 13, and I > home the Fri before Thanksgiving. I'm so blessed. God is good. > > I see Dr Kotloff, he is the best and specializes in ipf. > > > Donna In DE > IPF 01/1990 trx 10/2008 > Quote Link to comment Share on other sites More sharing options...
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