Hello,
The topic has NOT come up with doctors yet regarding a transplant, but I find myself, for the first time ever, trying to decide whether to stay in Los Angeles or not based on <b>when</b> I might get a tx. My gut says don't go b/c I don't know what the next year looks like. My doctors are here and when I do get a tx, I'm planning on being here at USC Univ. I think it's only b/c this past year was the first that I've seen a serious decline in my health and it now makes wonder when, when, when will it be? I kind of feel that if only I knew when, then I could plan. I know that's not realistic so some might say "don't live waiting, just live", and I have always had that attitude until this year.
My husband and I moved from No. California to So. California about 5 months ago. The question has recently come up (for reasons I'd rather not discuss) whether we might move back up north again. So many things about it sound great, except for all the medical reasons. We're now 30 minutes from the doctors and this is where I would want to be when the tx time comes, but of course who knows when that will be - hopefully a long way off. I just don't trust my body at the moment even though I'm doing fairly well right now and maintaining things. Last year was a wake up call.
So I ask this question of anyone who has a fev1 of say...45% and less, would you stay living close to the doctors/hospital just b/c you're wondering when you'll get a tx? I hate the thought of making a life decision based on when I <b>might</b> get a tx. I think it's ridiculous, unless of course you've already discussed it with your doctors, and it's time, etc.
Fyi, I went from 78% in 2005 to 36% last year and now I'm up to 46%. My planning sense has pretty much gone out the window and I just want to know if it's a stupid or okay thing to move to the boondocks again or not. These boondocks are at 8,500 feet, do not have CF doctors or a hospital or home nurse care, all of it I would have to drive back to LA to get. We've done it before and love the location, but that was when I was 78%.
Thanks for any thoughts.
The topic has NOT come up with doctors yet regarding a transplant, but I find myself, for the first time ever, trying to decide whether to stay in Los Angeles or not based on <b>when</b> I might get a tx. My gut says don't go b/c I don't know what the next year looks like. My doctors are here and when I do get a tx, I'm planning on being here at USC Univ. I think it's only b/c this past year was the first that I've seen a serious decline in my health and it now makes wonder when, when, when will it be? I kind of feel that if only I knew when, then I could plan. I know that's not realistic so some might say "don't live waiting, just live", and I have always had that attitude until this year.
My husband and I moved from No. California to So. California about 5 months ago. The question has recently come up (for reasons I'd rather not discuss) whether we might move back up north again. So many things about it sound great, except for all the medical reasons. We're now 30 minutes from the doctors and this is where I would want to be when the tx time comes, but of course who knows when that will be - hopefully a long way off. I just don't trust my body at the moment even though I'm doing fairly well right now and maintaining things. Last year was a wake up call.
So I ask this question of anyone who has a fev1 of say...45% and less, would you stay living close to the doctors/hospital just b/c you're wondering when you'll get a tx? I hate the thought of making a life decision based on when I <b>might</b> get a tx. I think it's ridiculous, unless of course you've already discussed it with your doctors, and it's time, etc.
Fyi, I went from 78% in 2005 to 36% last year and now I'm up to 46%. My planning sense has pretty much gone out the window and I just want to know if it's a stupid or okay thing to move to the boondocks again or not. These boondocks are at 8,500 feet, do not have CF doctors or a hospital or home nurse care, all of it I would have to drive back to LA to get. We've done it before and love the location, but that was when I was 78%.
Thanks for any thoughts.