If I had double listed it would have been at Mayo, they were very This is a very good point. I would have loved to double list in southern CA since my son lives there but when I found out that the wait there was worse than Boston I did not bother. Pharmaceutical that has been that costly for me was xifaxan, prior to transplant. Really? I am very fortunate in that we pay very little, thankfully, and I was not aware that they were so expensive. The post prescriptions can run thousands each month. Maybe it was discussed initially though and I just forgot.Ĩ. Hmm, I do not recall that being a requirement at MGH. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. I used MGH and they areįabulous but do not look as good as some others on that database.Ħ. Will of course appear to have better outcomes vs a transplant center that takes higher risk candidates. I think the fact that some places only do low risk causes the SRTR stats to be a bit unreliable because if a center only does low risk it
As they only will do low-risk transplants. That’s all the advice I can give found Dave’s post interesting:Ģ. So hang in there, do your best and try to be positive. At that point neither my husband felt the least bit nervous, we both basically felt relief. Things got bad then so when I happily got that call, months sooner than anticipated, we were both speechless, and off we went.
I was apprehensive about transplant and considering not going through with it until that last six weeks or so. Initially I had considered double listing in CA because our son lives there and we could be with him, but when I heard that CA would not be any better than Boston I did not of course. My center was in Boston which historically transplants on the higher side of MELD scores but I thankfully was transplanted at 28, probably because I am blood type B. If you are really miserably sick you may want to consider double listing in a region where transplants happen at a lower MELD than in CA. For me, it’s always better to know things than to be in the dark. When you get a MELD score that will help you in putting things in perspective and be some indication of how long you might have to wait for a transplant. I know from experience, easier said than done, but living the best life you can really is the best way to not let this get the better of you. Observe those things and don’t dwell on the negative. Try to live your life as well as you can and to do all you can to be healthy. You do need to try to not panic, despite how scary this all is. is one of the wise mentors on these groups and as always she is right. i would love any feedbacks or info web sites etc. That i think is my biggest concern now is getting the right nutrition i was 450 in dec.16 im 340 now i feel good but this news git me feelin like i did when i first found out. when i look up information on the net,its all different i need some FACTS some answers to my questions like is it better to move out of California for a better chace at getting a liver? or protein is good for your liver and malnutrition but is hard on the liver? can i get hepatitis from having cirrhosis? symptons and ?s about HE? i have kaiser permanente. but i cant see myself basically waiting to see if i get better or not at my next blood test. in December ,thats what it took for me to realize that i am sick and i might REALLY die. im 31 years old i now have varices that bleeded out i had to get bans on them. and the anxiety and just everything gits me thinking im goin crazy and dumb 4 not taking this disease or sickness more serious i wish there were more programs where im from (stockton, california) 4 young people i was only 25 when yhey told me my liver was bad i been struggling ever. am i just right to live 4 awhile till im older then im gonna need one right basically im in denial that i cant live on my liver 4 ever. So i barely understand this meld score thing and it scares me to my bones, so when i need a transplant this number is my ticket to one? if i need one.
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