November 1st, 2013
|12:56 am - [GloNoNatter] 11/01/2013 12:53:00 AM|
National Novel Writing Month site.
The Weekend Novelist
The Free Dictionary.com
From The Desk of Liz Ensley
Another year, another NationalNovel Writing Month. Let's see if I can do better, this year. If I can finish another book before I die, that will be good.
Of course, what would be even better, is if I don't die at all.
I have pulmonary fibrosis. I'm not sure I'll make the criteria for a lung transplant, though. With my knee, with my back, and with my oxygen level maintenance, there's no way I pass the preliminary criteria. Also, I'm overweight, which is also a strike against me. Even if I've been trying to work at losing my spare tire.
Wasn't sure I'd want to bother or not, this year, but what have I got to lose, right?
I'm not fully versed in transplant criteria, but from what I gather from friends on the list, soon to be on the list or at one time ON the list, exclusion criteria is more "can/will this person follow transplant anti rejection medication requirements" and if you're a smoker or not, or drinker or not ( as the case would be with a liver, the willingness to make life changes that maximize the success of said transplant, not so much a goobered knee or back. And if you didn't have oxygenation issues, then you wouldn't NEED said lungs as much?
One friend is on the list for a liver. She's not critically in need at this point but it's years down in her future, and she has some accompanying random medical issues too. I mean I don't know your situation in huge detail but I wouldn't say you're excluded yet.
I have already been told, flat out, the criteria, in particular the bits I do not meet at the current time. IU have already been rejected from the list once, with stipulation that I may be accepted if certain criteria are met. I also know that here is little likelihood I will be able to walk 60 feed in 6 minutes, or something, or 600 feet in an hour. I've signed a petition to change that, initiated by a woman whose husband worked hard to meet every criteria, including that, fell short on that, and died just before he got the transplant, when he finally did meet that walking criteria.
But yes, went through the discussion with Doctor Lederer back in July.
Edited at 2013-11-01 12:21 pm (UTC)
|Date:||November 1st, 2013 04:17 pm (UTC)|| |
it's somehow ironical,that the life is killing us slowly..that was an attempt for a very black humour..you know I'm wishing you luck and recovery-I'm wishing for a miracle :)
I'm hoping to get into a clinical study. So fr, I've narrolwy avoided them, but I think that's my best chance, right now. One of the doctors I'm seeing is involved in them, which i why Doctor Shaikh, my primary pulmonologist, referred me to him. She's been pretty mad at him for not keeping her updated on my progress or lack of it. I think that may be improving somewhat though, now that I have a medical advocate.
|Date:||November 1st, 2013 06:57 pm (UTC)|| |
God bless her
|Date:||November 1st, 2013 06:30 pm (UTC)|| |
you should write anyway, either soemthing that allows you a complete escape into your imagination, or something that helps you deal with what you're going through. use nanomimo as therapy
i VOTE ESCAPE. ;) i NEED A BREAK.
i'm lurkign aroudn and cheering you on for mthe sidelines .And tryng to wave that stupid sword away before it gets a chance to fall .because it seemsto me a bad knee and so forth sounds...less urgent somehow than lack of oxygen. but i'm a nil in medical decisionsso. and htis onaday when i told someone i was glad we weren't able yet to make people bionic. oh well.
A lot of things don't seem to matter quite so much, but they matter , a lot, when it comes to the yardstick they measure you by for the transplantation list.http://www.columbialungtransplant.org/guide_evaluation.html
Although it may be very iffy. This is saying a six minute walk test and, I read the other day, something like 60 feet. I don't think I'm physically capable of walking 60 feet in 6 minutes, and not only becai=useof my knee, since I also have developed problems with my lower back. But, we'll see.
i heard about that-one. what the hey. it has to do with a general low condition beign too dangerous for someoneto go into an operation and so forth. it'sabit ironic thasomeone wouldn't be fit enough for somethign that might help make the mfitter whereby the other issues might ease up somewhat too. I'll just wish you the best of luck.
I'm actually hoping to get into one of the trial groups, where they're testing out nonsurgical alternatives. Not easy, though. But the clinical trials are one reason Doctor Strachan wanted me to get started on the transplant list. It gets me on the short list for the clinical trials too. So far, they seem to have found a few things that, though they do not remove the possibility of a transplant, do slow down the progress of the lung disease, and that could be a good thing for me, at this point.
Edited at 2013-11-03 03:32 pm (UTC)