PFT's and transplants?

[Aftershock68]

I am new to this website. I have been told only once that I should be put on a transplant list, and it was at a different clinic than I go to now, and when the dr. said that to me, I looked at him like he was absolutely nuts! Me?! That was the only place that suggested it, and it was in 2000. I haven't been told that since. My question is how high or low are most people PFTs that they put you on a list? Are you in the hospital a lot and that's why you need a transplant? I apologize for my ignorance, I just never really paid attention to this before.

-CJ 41 w/CF

 

[Aftershock68]

I am new to this website. I have been told only once that I should be put on a transplant list, and it was at a different clinic than I go to now, and when the dr. said that to me, I looked at him like he was absolutely nuts! Me?! That was the only place that suggested it, and it was in 2000. I haven't been told that since. My question is how high or low are most people PFTs that they put you on a list? Are you in the hospital a lot and that's why you need a transplant? I apologize for my ignorance, I just never really paid attention to this before.

-CJ 41 w/CF

 

[Aftershock68]

I am new to this website. I have been told only once that I should be put on a transplant list, and it was at a different clinic than I go to now, and when the dr. said that to me, I looked at him like he was absolutely nuts! Me?! That was the only place that suggested it, and it was in 2000. I haven't been told that since. My question is how high or low are most people PFTs that they put you on a list? Are you in the hospital a lot and that's why you need a transplant? I apologize for my ignorance, I just never really paid attention to this before.
<br />
<br />-CJ 41 w/CF

 

[Transplantmommy]

Welcome CJ. It's not ignorance...that's information that only people who are going through the transplant process would really know. Every case is different, so I can only tell you mine.

I started my evaluations when my FEV1 was 40%. I had to start a little early because I had to have a liver too and the doctors knew that it would be a longer process for me. I was also having frequent infections and coughing up blood about once every two months...not just a couple of teaspoons, most times, nearly a cup of blood. There are a lot of factors that go into who needs a transplant and when. My FEV1 was falling rather quickly, I was on IV's more often than not, my O2 levels were falling, I couldn't keep weight on, and I was coughing up blood. Even with all of that, I was still told at my transplant center that I was likely too well for transplant, but they wanted to continue to see me and list me when I was ready.

After I had gone to Cleveland for two evaluations (first time for lungs, second time for liver) I found out that I was pregnant and I wouldn't terminate the pregnancy, so I had to hold off on the transplant process until after my son was born. I went back to Cleveland 2 months after he was born, finished some more evaluations, had some more tests done, and was finally listed for lungs and liver in August 2006.

By the time I was transplanted in January 2007, my FEV1 was only about 10%. I had a large bleed of about 4 cups of blood 8 days before I had the transplant. I had been told that if I had another bleed like that, I wouldn't make it to transplant because I would likely be too sick.

Anyway, what I always tell people is it's better to start early (or as early as they will let you) with the evaluations because then you are established with a transplant center, and they can list you when you are ready. It's better to be tested ealry and get everything done, than to test too late and not make it to transplant.

 

[Transplantmommy]

Welcome CJ. It's not ignorance...that's information that only people who are going through the transplant process would really know. Every case is different, so I can only tell you mine.

I started my evaluations when my FEV1 was 40%. I had to start a little early because I had to have a liver too and the doctors knew that it would be a longer process for me. I was also having frequent infections and coughing up blood about once every two months...not just a couple of teaspoons, most times, nearly a cup of blood. There are a lot of factors that go into who needs a transplant and when. My FEV1 was falling rather quickly, I was on IV's more often than not, my O2 levels were falling, I couldn't keep weight on, and I was coughing up blood. Even with all of that, I was still told at my transplant center that I was likely too well for transplant, but they wanted to continue to see me and list me when I was ready.

After I had gone to Cleveland for two evaluations (first time for lungs, second time for liver) I found out that I was pregnant and I wouldn't terminate the pregnancy, so I had to hold off on the transplant process until after my son was born. I went back to Cleveland 2 months after he was born, finished some more evaluations, had some more tests done, and was finally listed for lungs and liver in August 2006.

By the time I was transplanted in January 2007, my FEV1 was only about 10%. I had a large bleed of about 4 cups of blood 8 days before I had the transplant. I had been told that if I had another bleed like that, I wouldn't make it to transplant because I would likely be too sick.

Anyway, what I always tell people is it's better to start early (or as early as they will let you) with the evaluations because then you are established with a transplant center, and they can list you when you are ready. It's better to be tested ealry and get everything done, than to test too late and not make it to transplant.

 

[Transplantmommy]

Welcome CJ. It's not ignorance...that's information that only people who are going through the transplant process would really know. Every case is different, so I can only tell you mine.
<br />
<br />I started my evaluations when my FEV1 was 40%. I had to start a little early because I had to have a liver too and the doctors knew that it would be a longer process for me. I was also having frequent infections and coughing up blood about once every two months...not just a couple of teaspoons, most times, nearly a cup of blood. There are a lot of factors that go into who needs a transplant and when. My FEV1 was falling rather quickly, I was on IV's more often than not, my O2 levels were falling, I couldn't keep weight on, and I was coughing up blood. Even with all of that, I was still told at my transplant center that I was likely too well for transplant, but they wanted to continue to see me and list me when I was ready.
<br />
<br />After I had gone to Cleveland for two evaluations (first time for lungs, second time for liver) I found out that I was pregnant and I wouldn't terminate the pregnancy, so I had to hold off on the transplant process until after my son was born. I went back to Cleveland 2 months after he was born, finished some more evaluations, had some more tests done, and was finally listed for lungs and liver in August 2006.
<br />
<br />By the time I was transplanted in January 2007, my FEV1 was only about 10%. I had a large bleed of about 4 cups of blood 8 days before I had the transplant. I had been told that if I had another bleed like that, I wouldn't make it to transplant because I would likely be too sick.
<br />
<br />Anyway, what I always tell people is it's better to start early (or as early as they will let you) with the evaluations because then you are established with a transplant center, and they can list you when you are ready. It's better to be tested ealry and get everything done, than to test too late and not make it to transplant.

 

[mag6125]

My doctors had started to bring up the subject of transplant when my pfts started dipping below 30% and weren't getting much improvment. When I started my eval process (also at Cleveland) I was sick on IVs and my pfts were down to 19%. Right now I'm up to 26% and only have one test left to finish the evaluation process. My CF docs have been talking about it for the last two years, they're basically of the mindset of its better to go too soon and already be in the system at a transplant center than to wait until you're too sick to complete an evaluation.

 

[mag6125]

My doctors had started to bring up the subject of transplant when my pfts started dipping below 30% and weren't getting much improvment. When I started my eval process (also at Cleveland) I was sick on IVs and my pfts were down to 19%. Right now I'm up to 26% and only have one test left to finish the evaluation process. My CF docs have been talking about it for the last two years, they're basically of the mindset of its better to go too soon and already be in the system at a transplant center than to wait until you're too sick to complete an evaluation.

 

[mag6125]

My doctors had started to bring up the subject of transplant when my pfts started dipping below 30% and weren't getting much improvment. When I started my eval process (also at Cleveland) I was sick on IVs and my pfts were down to 19%. Right now I'm up to 26% and only have one test left to finish the evaluation process. My CF docs have been talking about it for the last two years, they're basically of the mindset of its better to go too soon and already be in the system at a transplant center than to wait until you're too sick to complete an evaluation.

 

[NYCLawGirl]

hi there,

i was evaluated in the 40s like patti, although by the time i actually had my eval i think my pfts were like 39%. but i also had some unique factors: i was on ivs more than 6 times a year, was hypercompliant with treatments and still losing FEV1, and i had some very resistant bugs. so my doctor thought it was better safe than sorry. she also thought that i would have a few years before my actual transplant. in actuality i had to be activated within a year because of a sudden tank and then got my tx less than a year later. i was off IVs for less than 3 weeks total in 2010 before getting my tx in june. FEV1 definitely is not everything!

that said, most people get evaluated when their FEV1 is around 30 or slightly lower. the waiting list is set up so that the sickest person gets the lungs -- you won't be called if you don't need them, and of course you can always refuse. but unfortunately CF has a nasty habit of being unpredictable -- unlike other diseases it's rarely just a slow, steady decline that you can see coming from a mile away. i don't say that to be scary, but i have never known anyone who regretted being evaluated early. just my 2 cents.

 

[NYCLawGirl]

hi there,

i was evaluated in the 40s like patti, although by the time i actually had my eval i think my pfts were like 39%. but i also had some unique factors: i was on ivs more than 6 times a year, was hypercompliant with treatments and still losing FEV1, and i had some very resistant bugs. so my doctor thought it was better safe than sorry. she also thought that i would have a few years before my actual transplant. in actuality i had to be activated within a year because of a sudden tank and then got my tx less than a year later. i was off IVs for less than 3 weeks total in 2010 before getting my tx in june. FEV1 definitely is not everything!

that said, most people get evaluated when their FEV1 is around 30 or slightly lower. the waiting list is set up so that the sickest person gets the lungs -- you won't be called if you don't need them, and of course you can always refuse. but unfortunately CF has a nasty habit of being unpredictable -- unlike other diseases it's rarely just a slow, steady decline that you can see coming from a mile away. i don't say that to be scary, but i have never known anyone who regretted being evaluated early. just my 2 cents.

 

[NYCLawGirl]

hi there,
<br />
<br />i was evaluated in the 40s like patti, although by the time i actually had my eval i think my pfts were like 39%. but i also had some unique factors: i was on ivs more than 6 times a year, was hypercompliant with treatments and still losing FEV1, and i had some very resistant bugs. so my doctor thought it was better safe than sorry. she also thought that i would have a few years before my actual transplant. in actuality i had to be activated within a year because of a sudden tank and then got my tx less than a year later. i was off IVs for less than 3 weeks total in 2010 before getting my tx in june. FEV1 definitely is not everything!
<br />
<br />that said, most people get evaluated when their FEV1 is around 30 or slightly lower. the waiting list is set up so that the sickest person gets the lungs -- you won't be called if you don't need them, and of course you can always refuse. but unfortunately CF has a nasty habit of being unpredictable -- unlike other diseases it's rarely just a slow, steady decline that you can see coming from a mile away. i don't say that to be scary, but i have never known anyone who regretted being evaluated early. just my 2 cents.

 

[nu65]

I was evaluated twice, at Shands in FL and Duke in NC. I was about 25% at Shands and 15% at Duke about 9 months later. If you're in the 30's start getting a repore with your transplant team and they can help you decide the best time to be listed because depending on your center you may be waiting a long time and may not have time if you numbers keep dropping. I was transplanted at 12% FEV1.

 

[nu65]

I was evaluated twice, at Shands in FL and Duke in NC. I was about 25% at Shands and 15% at Duke about 9 months later. If you're in the 30's start getting a repore with your transplant team and they can help you decide the best time to be listed because depending on your center you may be waiting a long time and may not have time if you numbers keep dropping. I was transplanted at 12% FEV1.

 

[nu65]

I was evaluated twice, at Shands in FL and Duke in NC. I was about 25% at Shands and 15% at Duke about 9 months later. If you're in the 30's start getting a repore with your transplant team and they can help you decide the best time to be listed because depending on your center you may be waiting a long time and may not have time if you numbers keep dropping. I was transplanted at 12% FEV1.

 

[Lex]

I have absolutely no idea what my FEV1 was when I was TX'ed.

During my evaluation, I was measured at 21%. But then I got double pneumonia, checked into the hospital and put on 100% o2. So, at my worst, I have no idea. Perhaps in the teens? Columbia never tested me while I was waiting in the hospital. I guess I was next on the list regardless of my FEV1.

I was at 30% for a year or so and when I didn't improve on a PICC, my doc referred me to Columbia. My advice....don't wait. It's tough to accept it, but that was the hardest part of the entire process for me.

PS. Once you're around 30%, you're a bad cold/pneumonia away from being in serious trouble. It's a good thing to be on the transplant center's radar.

 

[Lex]

I have absolutely no idea what my FEV1 was when I was TX'ed.

During my evaluation, I was measured at 21%. But then I got double pneumonia, checked into the hospital and put on 100% o2. So, at my worst, I have no idea. Perhaps in the teens? Columbia never tested me while I was waiting in the hospital. I guess I was next on the list regardless of my FEV1.

I was at 30% for a year or so and when I didn't improve on a PICC, my doc referred me to Columbia. My advice....don't wait. It's tough to accept it, but that was the hardest part of the entire process for me.

PS. Once you're around 30%, you're a bad cold/pneumonia away from being in serious trouble. It's a good thing to be on the transplant center's radar.

 

[Lex]

I have absolutely no idea what my FEV1 was when I was TX'ed.
<br />
<br />During my evaluation, I was measured at 21%. But then I got double pneumonia, checked into the hospital and put on 100% o2. So, at my worst, I have no idea. Perhaps in the teens? Columbia never tested me while I was waiting in the hospital. I guess I was next on the list regardless of my FEV1.
<br />
<br />I was at 30% for a year or so and when I didn't improve on a PICC, my doc referred me to Columbia. My advice....don't wait. It's tough to accept it, but that was the hardest part of the entire process for me.
<br />
<br />PS. Once you're around 30%, you're a bad cold/pneumonia away from being in serious trouble. It's a good thing to be on the transplant center's radar.

 

[donny71]

I agree with NYC, Get evaluated early. I went in for evaluation in my high 40's and mid 50's, and then they set me up to go for the 6 week program where they tune you up and get you super healthy then put you are 'on their radar'. although I tanked a few months after that and had an emergency transplant - good thing they knew who i was!

 

[donny71]

I agree with NYC, Get evaluated early. I went in for evaluation in my high 40's and mid 50's, and then they set me up to go for the 6 week program where they tune you up and get you super healthy then put you are 'on their radar'. although I tanked a few months after that and had an emergency transplant - good thing they knew who i was!