What's new
By:
Filters
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Simple question for cf'ers who are under 30% FEV1 (or post-transplant) see inside

N

nocode

New member
Hi,

How long have you been below the 30% FEV1 mark? And post-transplant cf'ers - how long were you under 30% before you got your transplant?

I am at 32% now.

Thanks, enjoy your weekend!

Vera, 30
 
A

azdesertrat

New member
I was at 13% when transplanted. I was at or under 30% for probably 1 year. Even though I was that low, I wasn't listed until I was at around 25%. It seems that once I hit 25% things really went south in a hurry. I was listed on Dec. 9 of '05. I blew out my left lung in March of '05. The ER doc conferred with my CF & Trans team(s). It was decided I would be put in a medically-induced coma to allow my lungs to heal as best as they could. I was in a coma for a month. At that point in time, I was unqualified for transplant. I was too far gone. Once I started signs of improvement, I was re-listed. I spent 2 months in the hospital. When I finally got out, I went home & things were good. I got 'The Call' at 0230 on 6/16/05. It was not a dry run, it was the real deal. 8 years later, I've had more than my share of complications but I'm still alive to tell you about it! Best of luck to you, I hope you receive the Second Chance that I was given.
 
S

scarecrow

New member
I have been under 30% for probably 10-12 years. I don't use any O2 and I work full time as an over-the-road truck driver. I am not saying that life is great but I do manage to get through each day.
If you are looking to get an idea of what life is like below 30% I can tell you that every point below 30% is like losing a piece of your life. The list of things that you can't do any more keeps getting longer and longer but life does go on. I am hoping to be saved by Stem Cell research but the wait has been getting longer every year.
If you are hoping to get a transplant I really can't help you but if you are still above 30% it seems to me that you could have a good shot at getting better.
I think some things that would help are a VEST, HTS, lots of water, work to increase your glutathion, take curcumin for inflamation, and get lots of exercise.
 
You must log in or register to reply here.
Top