"End Stage" CF

[dukeblue1206]

I have been considered "end stage" since 2001 so it goes to show some can still go about doing ok for a while even in end stage. My pfts have been anywhere from 16-35% over the past 10 years and right now stand at 31%. I still get around with no oxygen and go about my day to day activities with no major issues luckily. But everyone is different. I have just been lucky enough to be one that can function fine with low lung function. Was listed for transplant in 2001 but got a little bit better every year and went inactive in 2003 and just got a letter saying I have been taken off the list because of my improvements and steady health. But if I need to be I can be put right back on.

 

[Tammy15]

we were told our daughter was end stage when her PFTs stayed in 30 and she was on O2 continual , she started out on 5 then 8 then towards end up to 15 at times. She stayed as active as possible doing things with her 4 yr old son. We were told end stage in 2009 and while she was in and out of hospital quite a bit she always came home. She told us she was not ready to go 1yr and 1 mos later she was ready. While we did not dwell on dreaded end stage diagnosis, we did spend maybe 1 day having her tell us what she wanted. how she would like to pass etc.There was only one time the socaisl worker had told her she did not have to stay around for her son or us, she did get upset with that she felt like he was telling her to give up and she said mom I am not ready. I just told her theres nothing stamped on your forehead that has a date you have to leave us by. Plus the fact I told her you were born 2 mos late and since that day never on time for anything so why start now. She knew when it was time and I have to say there was such a peace and calmness about her.

 

[Tammy15]

we were told our daughter was end stage when her PFTs stayed in 30 and she was on O2 continual , she started out on 5 then 8 then towards end up to 15 at times. She stayed as active as possible doing things with her 4 yr old son. We were told end stage in 2009 and while she was in and out of hospital quite a bit she always came home. She told us she was not ready to go 1yr and 1 mos later she was ready. While we did not dwell on dreaded end stage diagnosis, we did spend maybe 1 day having her tell us what she wanted. how she would like to pass etc.There was only one time the socaisl worker had told her she did not have to stay around for her son or us, she did get upset with that she felt like he was telling her to give up and she said mom I am not ready. I just told her theres nothing stamped on your forehead that has a date you have to leave us by. Plus the fact I told her you were born 2 mos late and since that day never on time for anything so why start now. She knew when it was time and I have to say there was such a peace and calmness about her.

 

[Tammy15]

we were told our daughter was end stage when her PFTs stayed in 30 and she was on O2 continual , she started out on 5 then 8 then towards end up to 15 at times. She stayed as active as possible doing things with her 4 yr old son. We were told end stage in 2009 and while she was in and out of hospital quite a bit she always came home. She told us she was not ready to go 1yr and 1 mos later she was ready. While we did not dwell on dreaded end stage diagnosis, we did spend maybe 1 day having her tell us what she wanted. how she would like to pass etc.There was only one time the socaisl worker had told her she did not have to stay around for her son or us, she did get upset with that she felt like he was telling her to give up and she said mom I am not ready. I just told her theres nothing stamped on your forehead that has a date you have to leave us by. Plus the fact I told her you were born 2 mos late and since that day never on time for anything so why start now. She knew when it was time and I have to say there was such a peace and calmness about her.

 

[cannedbread]

When I was declared end-stage it was pre-tx. My mum asked how they determine that, and apparently there is no definite definition, it's more low quality of life and no common treatment options available left. My quality of life WAS low, as my pft's were late 20's and antibiotics as a whole just were not working.
So basically it's the doctors decision to call that, yet it goes on paper work and affects a lot. It also bumps one up on the tx priority list.

 

[cannedbread]

When I was declared end-stage it was pre-tx. My mum asked how they determine that, and apparently there is no definite definition, it's more low quality of life and no common treatment options available left. My quality of life WAS low, as my pft's were late 20's and antibiotics as a whole just were not working.
So basically it's the doctors decision to call that, yet it goes on paper work and affects a lot. It also bumps one up on the tx priority list.

 

[cannedbread]

When I was declared end-stage it was pre-tx. My mum asked how they determine that, and apparently there is no definite definition, it's more low quality of life and no common treatment options available left. My quality of life WAS low, as my pft's were late 20's and antibiotics as a whole just were not working.
<br />So basically it's the doctors decision to call that, yet it goes on paper work and affects a lot. It also bumps one up on the tx priority list.

 

[Marjolein]

My lungfunction was 33% or lower since I was 8 and really was not concidered 'end stage' at that time.

First time my doc told me those words was about 1 year pre tx, when I was 21. My lungfunction was at 15% All we could do was try keep me stable but IV's didn't really do it's job anymore. Even sitting up was getting hard and while I still did things (at that time), I had to lay down most of the day to give my body some rest as it took all my energy just to breathe. The last two months pre tx I think I was out of bed for not more than 4 hours a day and those hours were scatered over the day with it lot of the times being even less hours.

 

[Marjolein]

My lungfunction was 33% or lower since I was 8 and really was not concidered 'end stage' at that time.

First time my doc told me those words was about 1 year pre tx, when I was 21. My lungfunction was at 15% All we could do was try keep me stable but IV's didn't really do it's job anymore. Even sitting up was getting hard and while I still did things (at that time), I had to lay down most of the day to give my body some rest as it took all my energy just to breathe. The last two months pre tx I think I was out of bed for not more than 4 hours a day and those hours were scatered over the day with it lot of the times being even less hours.

 

[Marjolein]

My lungfunction was 33% or lower since I was 8 and really was not concidered 'end stage' at that time.
<br />
<br />First time my doc told me those words was about 1 year pre tx, when I was 21. My lungfunction was at 15% All we could do was try keep me stable but IV's didn't really do it's job anymore. Even sitting up was getting hard and while I still did things (at that time), I had to lay down most of the day to give my body some rest as it took all my energy just to breathe. The last two months pre tx I think I was out of bed for not more than 4 hours a day and those hours were scatered over the day with it lot of the times being even less hours.