|
Post by Colleen-NC on Jul 4, 2008 10:54:22 GMT -5
Had a great visit yesterday. Even meet the woman from the Organ Procurement Program. She was awesome. Things are good as far as my health. they score you from 30 to 50, lowest being the healthiest and higher to 50 the sickest. My score was 31 and I have moved to a 32. Not sure if this is good or bad. One of the reasons I am waiting is because I am so incredibly stable. Its a move up so hopefully my wait wont be too much longer. Who knows!! My PFT was about the same, walked 54 feet less on the 6 min. walk and had the same blood work done.
|
|
cindy
New Member
Posts: 2
|
Post by cindy on Jul 4, 2008 16:06:03 GMT -5
Colleen~
Great news!!!
This is my first post, I kind of spend my time lurking (maybe I'm just shy). I am on the transplant waiting list also. I was listed 1 month ago and already have had a dry run. My score is 33.5. I waited almost too long to decide to get listed my FEV1 is 12% and I had almost become bed ridden. I have been going to rehab 3 times a week and it is amazing how much difference there is. I have been on O2 24/7 since 2003, while exercising I run between 6-8 liters. I really have appreciated being able to at least keep up with who share my disease.
Keep up the positive attitude and good luck and love to all that post on this sight,
|
|
|
Post by Colleen-NC on Jul 4, 2008 18:33:57 GMT -5
Hi Cindy and welcome!! I am so happy to have someone else going thru the same thing. Rehab is great, I went thru the program about 3 years ago and keep up at home. I was in the maintenance program but got really sick last winter and stayed away from hospitals since. What center are you listed at? Hope you don't mind me asking you some questions. I lurked around for a year before I posted so your not alone. Once you get to know people its gets so much easier. There's another woman, Merry from Florida who is going to be starting testing for Transplant soon. I used to go the the 2nd Wind Transplant board but lately it seems like their down more than up and running. Things have slowed to almost no posts before this last shut down. Oh and my fev1 is about 14% although yesterday I blew a 15 but other numbers were worse, can't expel as much so more trapping so I think that's what brought my score up a little. If there's anything we can help you with, please a just ask, it gets easier !!
|
|
cindy
New Member
Posts: 2
|
Post by cindy on Jul 4, 2008 22:17:12 GMT -5
Colleen,
I'm at the University of Utah in Salt Lake City. This is a small center, and have not had the greatest rating. The main reason that the rating was lower was that they only transplant low numbers and for the last couple of years they have transplanted higher risk patients. Hence now trying to get on the list up there is not that easy because they don't want to lose there Medicare listing. I am very happy with everyone up there, the doctors and corrdinators, rehab and nurses have all been great.
I have had some experience with Transplants. My husband was listed for a heart in 1998-1999 however he was not able to make it until a heart was available. I'm not sure which is harder, being the patient or the caregiver. I honestly think that is is the caregiver, they are the true angels. This was not an easy decision to make, to be listed. I wasn't sure that I wanted my kids to have to go through this again, but they both asked me to do what ever I could so that I could be around for as long as I could, so I decided if I was going to do it I would do it full steam ahead.
The kids are yelling for me to come watch the fireworks so I'll talk again soon. Take care all Cindy
|
|
|
Post by Colleen-NC on Jul 9, 2008 18:53:39 GMT -5
Cindy, thanks for the info. Nice to know there are centers that do take the high risk ones. Sorry to read about your husband. That certainly is hard to go through.
You made your decision basically like I did mine. Want to be there for the kids. Good Luck !
|
|