at what point is transplant suggested?

[JORDYSMOM]

I can only imagine how shocking and unsettling it was for you to hear Jesse's doc bring up transplant. If she is thinking that the reflux is causing all of his problems, she should just come right out & say it though, instead of bringing up a much more serious surgery.
<br />
<br />
<br />Do you think that the reflux is causing Jesse's breathing problems? I know that before I got my reflux under better control, I woke up almost every night choking on acid. I had a terrible time breathing too. I considered the surgery for myself, but after going in, my GI doc suggested we increase my meds first. I am breathing better overall, but I still have to watch what I eat, or I get the reflux again. Also, sometimes when I bend down, whatever is in my stomach tries to come up, and no amount of meds will stop that. The suregery may still be in my future.
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<br />If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey

 

[theLostMiler]

Transplant is not based on pfts alone... typically they like to list people who are consistantly under 30%, but it is not a requirement.

Transplant can be decided based on many factors, hemoptysis issues, iv/abx resistance issues, quality of life issues, oxygen dependence (known some tx'ers who got one even w/o 24/7 o2)... that is the reason there is a Lung Allocation Score (LAS)(for adults anyways) and the reason why there are so many tests to be done.

Transplant is really really tough to comprehend and hard on the mind and emotions... I think they may have brought it up basically on the 'unknown'... it was first brought up to me by old ped doctor (ugh, never meshed with her) when my pfts were in the 50's... but b/c of my bugs she was saying I would need to go to North Carolina (this was when I just had M.A.) etc... I started crying as soon as she said it and I was pissed at her. It was in 2006 or 2007 I believe.

The next time I got talked to about transplant was in 2008, by an actual transplant surgeon, and he told me his reasonings were b/c of my bugs, it was recently after culturing b. cep. He said that I would have a really hard time finding a center to accept me b/c I would be a more risky case... so it was more about finding someone to say, "Yes" but not necessarily b/c I needed it right away. I needed all that time (and more) to come to terms with the fact, that transplant might be a real possibility for me (and it might not at the same time). But like another said, starting the tx process was mainly for the 'in case something happens' then everything is all ready to go...

Anyways, the point is, it might be to scare him, but they could be concerned about his trending for the year, his increased iv usage etc... I think its just to get you prepared... the word is scary for sure so it takes a long long long time to wrap your mind around it (if thats even possible). I think its just for the unknown like others said too.

 

[theLostMiler]

Transplant is not based on pfts alone... typically they like to list people who are consistantly under 30%, but it is not a requirement.

Transplant can be decided based on many factors, hemoptysis issues, iv/abx resistance issues, quality of life issues, oxygen dependence (known some tx'ers who got one even w/o 24/7 o2)... that is the reason there is a Lung Allocation Score (LAS)(for adults anyways) and the reason why there are so many tests to be done.

Transplant is really really tough to comprehend and hard on the mind and emotions... I think they may have brought it up basically on the 'unknown'... it was first brought up to me by old ped doctor (ugh, never meshed with her) when my pfts were in the 50's... but b/c of my bugs she was saying I would need to go to North Carolina (this was when I just had M.A.) etc... I started crying as soon as she said it and I was pissed at her. It was in 2006 or 2007 I believe.

The next time I got talked to about transplant was in 2008, by an actual transplant surgeon, and he told me his reasonings were b/c of my bugs, it was recently after culturing b. cep. He said that I would have a really hard time finding a center to accept me b/c I would be a more risky case... so it was more about finding someone to say, "Yes" but not necessarily b/c I needed it right away. I needed all that time (and more) to come to terms with the fact, that transplant might be a real possibility for me (and it might not at the same time). But like another said, starting the tx process was mainly for the 'in case something happens' then everything is all ready to go...

Anyways, the point is, it might be to scare him, but they could be concerned about his trending for the year, his increased iv usage etc... I think its just to get you prepared... the word is scary for sure so it takes a long long long time to wrap your mind around it (if thats even possible). I think its just for the unknown like others said too.

 

[theLostMiler]

Transplant is not based on pfts alone... typically they like to list people who are consistantly under 30%, but it is not a requirement.
<br />
<br />Transplant can be decided based on many factors, hemoptysis issues, iv/abx resistance issues, quality of life issues, oxygen dependence (known some tx'ers who got one even w/o 24/7 o2)... that is the reason there is a Lung Allocation Score (LAS)(for adults anyways) and the reason why there are so many tests to be done.
<br />
<br />Transplant is really really tough to comprehend and hard on the mind and emotions... I think they may have brought it up basically on the 'unknown'... it was first brought up to me by old ped doctor (ugh, never meshed with her) when my pfts were in the 50's... but b/c of my bugs she was saying I would need to go to North Carolina (this was when I just had M.A.) etc... I started crying as soon as she said it and I was pissed at her. It was in 2006 or 2007 I believe.
<br />
<br />The next time I got talked to about transplant was in 2008, by an actual transplant surgeon, and he told me his reasonings were b/c of my bugs, it was recently after culturing b. cep. He said that I would have a really hard time finding a center to accept me b/c I would be a more risky case... so it was more about finding someone to say, "Yes" but not necessarily b/c I needed it right away. I needed all that time (and more) to come to terms with the fact, that transplant might be a real possibility for me (and it might not at the same time). But like another said, starting the tx process was mainly for the 'in case something happens' then everything is all ready to go...
<br />
<br />Anyways, the point is, it might be to scare him, but they could be concerned about his trending for the year, his increased iv usage etc... I think its just to get you prepared... the word is scary for sure so it takes a long long long time to wrap your mind around it (if thats even possible). I think its just for the unknown like others said too.

 

[Transplantmommy]

As others have said, there are many factors that go into being ready to be listed for a tx. Transplant was suggested to me when my FEV1 was 40% because I was dropping steadily, my O2 levels were starting to drop, and I was on IV's frequently for infections. When I was first seen at the Cleveland Clinic, Dr. Budev did tell me that I was likely too healthy for tx at that time but they wanted to keep an eye on me so that they could list me when I was ready.

I found out that I was 9 weeks pregnant a couple of weeks later and that held off the transplant process, but I was listed 7 months after I had Brady. I had only just started O2 therapy 24/7, but I had frequent bleeds and I was on IV treatment more often than not. I was on the list for 5 months and I was very ready for the transplant when I got it.

Trust in the doctors, whatever reason they brought the topic up, they brought it up for a good reason. If you want to talk to them about why they brought it up, and don't want your son to know the reason, give them a call when he's not around.

 

[Transplantmommy]

As others have said, there are many factors that go into being ready to be listed for a tx. Transplant was suggested to me when my FEV1 was 40% because I was dropping steadily, my O2 levels were starting to drop, and I was on IV's frequently for infections. When I was first seen at the Cleveland Clinic, Dr. Budev did tell me that I was likely too healthy for tx at that time but they wanted to keep an eye on me so that they could list me when I was ready.

I found out that I was 9 weeks pregnant a couple of weeks later and that held off the transplant process, but I was listed 7 months after I had Brady. I had only just started O2 therapy 24/7, but I had frequent bleeds and I was on IV treatment more often than not. I was on the list for 5 months and I was very ready for the transplant when I got it.

Trust in the doctors, whatever reason they brought the topic up, they brought it up for a good reason. If you want to talk to them about why they brought it up, and don't want your son to know the reason, give them a call when he's not around.

 

[Transplantmommy]

As others have said, there are many factors that go into being ready to be listed for a tx. Transplant was suggested to me when my FEV1 was 40% because I was dropping steadily, my O2 levels were starting to drop, and I was on IV's frequently for infections. When I was first seen at the Cleveland Clinic, Dr. Budev did tell me that I was likely too healthy for tx at that time but they wanted to keep an eye on me so that they could list me when I was ready.
<br />
<br />I found out that I was 9 weeks pregnant a couple of weeks later and that held off the transplant process, but I was listed 7 months after I had Brady. I had only just started O2 therapy 24/7, but I had frequent bleeds and I was on IV treatment more often than not. I was on the list for 5 months and I was very ready for the transplant when I got it.
<br />
<br />Trust in the doctors, whatever reason they brought the topic up, they brought it up for a good reason. If you want to talk to them about why they brought it up, and don't want your son to know the reason, give them a call when he's not around.

 

[Lex]

Having gone through the process, it's never too soon.

Best case: you go, you listen, you go on with your life....but the center is aware of your existence in case something happens.

Worse case: you go, you listen, you take a turn for the worse, you get listed because you're already on the center's radar.

Getting evaluated is nothing to be scared of. The thought of it is far worse than the experience.

 

[Lex]

Having gone through the process, it's never too soon.

Best case: you go, you listen, you go on with your life....but the center is aware of your existence in case something happens.

Worse case: you go, you listen, you take a turn for the worse, you get listed because you're already on the center's radar.

Getting evaluated is nothing to be scared of. The thought of it is far worse than the experience.

 

[Lex]

Having gone through the process, it's never too soon.
<br />
<br />Best case: you go, you listen, you go on with your life....but the center is aware of your existence in case something happens.
<br />
<br />Worse case: you go, you listen, you take a turn for the worse, you get listed because you're already on the center's radar.
<br />
<br />Getting evaluated is nothing to be scared of. The thought of it is far worse than the experience.