wondering if i am almost there for a transplant

[Iamqueenofeverything]

I was in the hospital in October because by functions were at 35%. I was in the hospital again in December with a 25%. Got a check up and my functions were at 32% about a week and half ago. I am still tight and short of breath after being on steriod, four treatments daily, and exercise. I am not on oxygen or have a fever. i guess that's a good thing. it's hard to not be negative or alarmed. just want to know if this is a start to think about transplant. talked to my doctor to and he told me that since i am not on oxygen or going to the hospital alot more than he wants to do other things like steriods.
just want to know what your experience was like before you got on the transplant list. what was your breathing like? were you tired all the time? how long did you stay in the hospital and how often did you go to the hospital?

 

[Iamqueenofeverything]

I was in the hospital in October because by functions were at 35%. I was in the hospital again in December with a 25%. Got a check up and my functions were at 32% about a week and half ago. I am still tight and short of breath after being on steriod, four treatments daily, and exercise. I am not on oxygen or have a fever. i guess that's a good thing. it's hard to not be negative or alarmed. just want to know if this is a start to think about transplant. talked to my doctor to and he told me that since i am not on oxygen or going to the hospital alot more than he wants to do other things like steriods.
just want to know what your experience was like before you got on the transplant list. what was your breathing like? were you tired all the time? how long did you stay in the hospital and how often did you go to the hospital?

 

[Angel2393]

My lung function was really low, i believe it was around 25 or 18. Even when I would just be sitting my family and friends would see my back moving up and down really fast, because of my heavy breathing. I was very skinny and didnt eat, I didnt wanna do anything and I was on oxegyn the whole day. Ive had my transplant 5 years ago now, best thing i ever did.. made me a totally didfferent personnn and got to have amazing teenage years haha

 

[Angel2393]

My lung function was really low, i believe it was around 25 or 18. Even when I would just be sitting my family and friends would see my back moving up and down really fast, because of my heavy breathing. I was very skinny and didnt eat, I didnt wanna do anything and I was on oxegyn the whole day. Ive had my transplant 5 years ago now, best thing i ever did.. made me a totally didfferent personnn and got to have amazing teenage years haha

 

[Ready2Dance]

With your lung function dropping like that, I don't think it would be a bad idea to start entertaining the idea of transplant. Yes, my lung function was 24% when I was transplanted and I had to do IV antibiotics about 3 out of every 4 weeks of the month, and I couldn't do much physically (took frequent naps) and was on O2 all the time when I was transplanted. BUT, when I went for evaluation, I was not. My lung function was more around 28-32% depending on the moment tested. I wasn't on oxygen but yes... I was doing IVs frequently. I would say when your BASELINE FEV1 is around 30 is when you need to consider transplant, strictly because you don't know how quickly things can change for you at that point.

 

[Ready2Dance]

With your lung function dropping like that, I don't think it would be a bad idea to start entertaining the idea of transplant. Yes, my lung function was 24% when I was transplanted and I had to do IV antibiotics about 3 out of every 4 weeks of the month, and I couldn't do much physically (took frequent naps) and was on O2 all the time when I was transplanted. BUT, when I went for evaluation, I was not. My lung function was more around 28-32% depending on the moment tested. I wasn't on oxygen but yes... I was doing IVs frequently. I would say when your BASELINE FEV1 is around 30 is when you need to consider transplant, strictly because you don't know how quickly things can change for you at that point.

 

[chuckstyl5]

My FEV1 was 19% when transplanted but I was still working 40+ hour weeks and doing as much as I can even with the O2 tanks

 

[chuckstyl5]

My FEV1 was 19% when transplanted but I was still working 40+ hour weeks and doing as much as I can even with the O2 tanks

 

[kallaart]

For myself in 2007 when I was 15, my FEV1 was at 13%, being admitted into the hospital every other week to get IV antibiotics, weighed 83lbs, and on 6 liters of oxygen 24/7. I couldnt really do anything. I could walk for a little while without losing my breath. That was almost 5 years ago.

In October, I started to get sick again and having major rejection episodes. And on my birthday in December, one of the nurses from the transplant floor, called and said they wanted me to be evaluated to be put back on the transplant list.

Now, my FEV1 is at 14%, I'm on around 2-3 liters of oxygen when walking, but according to my doctors I dont need any oxygen when I'm at rest. However, my breathing is beyond worse then before my first transplant.

 

[kallaart]

For myself in 2007 when I was 15, my FEV1 was at 13%, being admitted into the hospital every other week to get IV antibiotics, weighed 83lbs, and on 6 liters of oxygen 24/7. I couldnt really do anything. I could walk for a little while without losing my breath. That was almost 5 years ago.

In October, I started to get sick again and having major rejection episodes. And on my birthday in December, one of the nurses from the transplant floor, called and said they wanted me to be evaluated to be put back on the transplant list.

Now, my FEV1 is at 14%, I'm on around 2-3 liters of oxygen when walking, but according to my doctors I dont need any oxygen when I'm at rest. However, my breathing is beyond worse then before my first transplant.

 

[azdesertrat]

My FEV was 13% at time of transplant.
Like many, I was still working as much as I could.
In fact, I walked into the transplant center under my own power when it came time. That freaked out alot of doctors & nurses.
My lungs were so bad the pathologist said he thought they came from a cadaver.
Best of luck to you, if I can be of any help please feel free to contact me.
Take care, may God bless & be with you...
'Pat'

 

[azdesertrat]

My FEV was 13% at time of transplant.
Like many, I was still working as much as I could.
In fact, I walked into the transplant center under my own power when it came time. That freaked out alot of doctors & nurses.
My lungs were so bad the pathologist said he thought they came from a cadaver.
Best of luck to you, if I can be of any help please feel free to contact me.
Take care, may God bless & be with you...
'Pat'

 

[Daverog75]

Hello,

Your situation sounds a lot like mine. Around 5 years ago my lung function was 34% I was working full time but I was getting sick every other month and needed 6 picc lines in a year and a half. Every time I had a flair up my lung funciton would drop sometimes as low as 22% but I always bounced after IV treatments. My doctor recognized what was going on and recommended 2 things. 1, was quit working and go on government disability and 2, was to be screaned for transplant. In Canada you have to do a whole bunch test just to be told that you are good candidate for transplant.

I took his advice and after I quit working my health stabalized but just in December I caught a cold and have not bounced back from this one and my lung is at 26% and it looks like it is going to stay there so I called my transplant centre in Toronto. I will not wait for lung function to get below 20% I know how much trouble I am having now and don't really want to know what life is like with just 19% lung function.

Your should at least make an appointment for you to talk to the transplant people. You don't have to go on the list right away but it would help if they know who you are and that you are getting closer to needing surgery.

I hope this helped.

Dave 37 w/cf

 

[Daverog75]

Hello,

Your situation sounds a lot like mine. Around 5 years ago my lung function was 34% I was working full time but I was getting sick every other month and needed 6 picc lines in a year and a half. Every time I had a flair up my lung funciton would drop sometimes as low as 22% but I always bounced after IV treatments. My doctor recognized what was going on and recommended 2 things. 1, was quit working and go on government disability and 2, was to be screaned for transplant. In Canada you have to do a whole bunch test just to be told that you are good candidate for transplant.

I took his advice and after I quit working my health stabalized but just in December I caught a cold and have not bounced back from this one and my lung is at 26% and it looks like it is going to stay there so I called my transplant centre in Toronto. I will not wait for lung function to get below 20% I know how much trouble I am having now and don't really want to know what life is like with just 19% lung function.

Your should at least make an appointment for you to talk to the transplant people. You don't have to go on the list right away but it would help if they know who you are and that you are getting closer to needing surgery.

I hope this helped.

Dave 37 w/cf

 

[Lex]

Like others, I would highly advise you start the process. It took me a solid year from my initial consult to TX. I started at about 26% FEV1 (I have no idea what it was at the lowest---I was too weak to take the test-- Once you've done all your testing, sit back and relax with the peace of mind that you'll be ok once you need a new set. If you're not listed and then you get a bad bug and you lose lung function rapidly....well....you can guess what happens then. Don't wait around. TX is going to happen if you choose it, but you should embrace it. I saw it as a safety net (just in case). 6 weeks after I was listed, I got pneumonia. Suddenly, the end was near and instead of freaking out, I was simply bumped up the list and got my second chance. Remember, being on the list doesn't mean you'll get a call any time soon. Look at my bud Jerry---it took 2 years! God bless that man!

 

[Lex]

Like others, I would highly advise you start the process. It took me a solid year from my initial consult to TX. I started at about 26% FEV1 (I have no idea what it was at the lowest---I was too weak to take the test-- Once you've done all your testing, sit back and relax with the peace of mind that you'll be ok once you need a new set. If you're not listed and then you get a bad bug and you lose lung function rapidly....well....you can guess what happens then. Don't wait around. TX is going to happen if you choose it, but you should embrace it. I saw it as a safety net (just in case). 6 weeks after I was listed, I got pneumonia. Suddenly, the end was near and instead of freaking out, I was simply bumped up the list and got my second chance. Remember, being on the list doesn't mean you'll get a call any time soon. Look at my bud Jerry---it took 2 years! God bless that man!