"End Stage" CF

S

stillkicking

New member
So I was reading another post and it got me wondering. I'm a bit ignorant when it comes to this, but what exactly is "end stage"? Is it when your PFT's reach certain numbers, or is it when the rest of your organs start to fail and you're only predicted to live a certain amount of time? Someone posted in another area about being "end stage" prior to transplant, and I was just a little curious about the meanings of the dreaded phrase. Any imput would be appreciated.
 
S

stillkicking

New member
So I was reading another post and it got me wondering. I'm a bit ignorant when it comes to this, but what exactly is "end stage"? Is it when your PFT's reach certain numbers, or is it when the rest of your organs start to fail and you're only predicted to live a certain amount of time? Someone posted in another area about being "end stage" prior to transplant, and I was just a little curious about the meanings of the dreaded phrase. Any imput would be appreciated.
 
S

stillkicking

New member
So I was reading another post and it got me wondering. I'm a bit ignorant when it comes to this, but what exactly is "end stage"? Is it when your PFT's reach certain numbers, or is it when the rest of your organs start to fail and you're only predicted to live a certain amount of time? Someone posted in another area about being "end stage" prior to transplant, and I was just a little curious about the meanings of the dreaded phrase. Any imput would be appreciated.
 
T

theLostMiler

New member
To me, end stage is basically what you said. Your lung function and QOL (Quality of Life) are getting bad... and death is around the corner unless you try a transplant.

Sometimes that includes other organs starting to fail. But end stage, is the point of no return... youre not going to be able to bring your pfts back up, or get well enough to avoid death or a transplant.

Man, I am not one with words at all, so this isnt a very good answer.... but I feel like you basically explained... and the words, "end stage" are pretty self-explanatory as well.
 
T

theLostMiler

New member
To me, end stage is basically what you said. Your lung function and QOL (Quality of Life) are getting bad... and death is around the corner unless you try a transplant.

Sometimes that includes other organs starting to fail. But end stage, is the point of no return... youre not going to be able to bring your pfts back up, or get well enough to avoid death or a transplant.

Man, I am not one with words at all, so this isnt a very good answer.... but I feel like you basically explained... and the words, "end stage" are pretty self-explanatory as well.
 
T

theLostMiler

New member
To me, end stage is basically what you said. Your lung function and QOL (Quality of Life) are getting bad... and death is around the corner unless you try a transplant.
<br />
<br />Sometimes that includes other organs starting to fail. But end stage, is the point of no return... youre not going to be able to bring your pfts back up, or get well enough to avoid death or a transplant.
<br />
<br />Man, I am not one with words at all, so this isnt a very good answer.... but I feel like you basically explained... and the words, "end stage" are pretty self-explanatory as well.
 
J

jfarel

New member
Generally speaking you are considered for transplant below 30 percent fev1. Other factors come into play as well, but when you hit 30 percent you don't have much margin for error if you get sick. Even though some people may feel really pretty good at 30 percent, others have a hard time walking and are using oxygen. It really varies from person to person, but either way, there isn't much margin for error if you get seriously ill, which is why that is a good time to consider transplant. I got listed in the mid to high 20's and waited two years for transplant. When I got my transplant my fev1 was between 18-22 percent and I felt sick most every day.

jfarel: bilateral lung transplant 6/23/10
 
J

jfarel

New member
Generally speaking you are considered for transplant below 30 percent fev1. Other factors come into play as well, but when you hit 30 percent you don't have much margin for error if you get sick. Even though some people may feel really pretty good at 30 percent, others have a hard time walking and are using oxygen. It really varies from person to person, but either way, there isn't much margin for error if you get seriously ill, which is why that is a good time to consider transplant. I got listed in the mid to high 20's and waited two years for transplant. When I got my transplant my fev1 was between 18-22 percent and I felt sick most every day.

jfarel: bilateral lung transplant 6/23/10
 
J

jfarel

New member
Generally speaking you are considered for transplant below 30 percent fev1. Other factors come into play as well, but when you hit 30 percent you don't have much margin for error if you get sick. Even though some people may feel really pretty good at 30 percent, others have a hard time walking and are using oxygen. It really varies from person to person, but either way, there isn't much margin for error if you get seriously ill, which is why that is a good time to consider transplant. I got listed in the mid to high 20's and waited two years for transplant. When I got my transplant my fev1 was between 18-22 percent and I felt sick most every day.
<br />
<br />jfarel: bilateral lung transplant 6/23/10
 
T

theLostMiler

New member
Yes, generally speaking below 30% is when youre supposed to be "okay" for transplant... but like the other poster said, it really is personal.

For me, I havent been listed, but have already had one consultation at a center and will be seeing them again for an update on me...

i am in the 30s and low 40s generally... but I have been slowly declining pretty much for 2-3 years... BUT I have some bugs that cause concern for transplant, so for that reason, we started looking at transplant "earlier" just so that way I would have a center set up for when "***** hit the fan" (started becoming really resistant, sudden decline in pfts, in general... I was denied by 3 or 4 centers first, before one said that as long as I have 1 or 2 abx left they will do the transplant.

Others b/c of bleeding issues or other issues get listed or start looking earlier than the "30%" ... others I know have been stable at like 26% for like 4 years... so at one time they were listed, but upon seeing no more declining and having a good enough QOL isnt listed and just chilling at 26%.
 
T

theLostMiler

New member
Yes, generally speaking below 30% is when youre supposed to be "okay" for transplant... but like the other poster said, it really is personal.

For me, I havent been listed, but have already had one consultation at a center and will be seeing them again for an update on me...

i am in the 30s and low 40s generally... but I have been slowly declining pretty much for 2-3 years... BUT I have some bugs that cause concern for transplant, so for that reason, we started looking at transplant "earlier" just so that way I would have a center set up for when "***** hit the fan" (started becoming really resistant, sudden decline in pfts, in general... I was denied by 3 or 4 centers first, before one said that as long as I have 1 or 2 abx left they will do the transplant.

Others b/c of bleeding issues or other issues get listed or start looking earlier than the "30%" ... others I know have been stable at like 26% for like 4 years... so at one time they were listed, but upon seeing no more declining and having a good enough QOL isnt listed and just chilling at 26%.
 
T

theLostMiler

New member
Yes, generally speaking below 30% is when youre supposed to be "okay" for transplant... but like the other poster said, it really is personal.
<br />
<br />For me, I havent been listed, but have already had one consultation at a center and will be seeing them again for an update on me...
<br />
<br />i am in the 30s and low 40s generally... but I have been slowly declining pretty much for 2-3 years... BUT I have some bugs that cause concern for transplant, so for that reason, we started looking at transplant "earlier" just so that way I would have a center set up for when "***** hit the fan" (started becoming really resistant, sudden decline in pfts, in general... I was denied by 3 or 4 centers first, before one said that as long as I have 1 or 2 abx left they will do the transplant.
<br />
<br />Others b/c of bleeding issues or other issues get listed or start looking earlier than the "30%" ... others I know have been stable at like 26% for like 4 years... so at one time they were listed, but upon seeing no more declining and having a good enough QOL isnt listed and just chilling at 26%.
 
H

Havoc

New member
End stage typically refers to an illness that has reached the point where treatment is down to comfort measures (end stage cancer for instance). Nothing more can be done medically to improve said condition.
 
H

Havoc

New member
End stage typically refers to an illness that has reached the point where treatment is down to comfort measures (end stage cancer for instance). Nothing more can be done medically to improve said condition.
 
H

Havoc

New member
End stage typically refers to an illness that has reached the point where treatment is down to comfort measures (end stage cancer for instance). Nothing more can be done medically to improve said condition.
 
D

dukeblue1206

New member
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.
 
D

dukeblue1206

New member
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.
 
You must log in or register to reply here.
Top