I was recently in the hospital, and have been interested for years in getting on the list for a transplant. My Baystate Medical pulmonologist has continuously told me that I am "too healthy" (FEV 1 too high or something like that) to be considered for the list. However, during my recent hospitalization, the head pulmonologist at the rehab hospital I was at suggested to my mother the day I was discharged to inquire about getting me on the list anyway, because he feels that if I do not get on it, I may eventually be too sick to even be considered at all. In other words, he feels that Baystate pulmonologists in my CF clinic are "dragging their feet" in starting the process. Funny thing is, this head pulmonologist has worked at Baystate in the past.
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When to go on the transplant list
- Thread starter Daverog75
- Start date
I initially posted this message in september but now in February my lung functionhas dropped 3% down to 26% and I am struggling. I have trouble just walking around a grocerie store. I can't take inhaled antibiotics as they really irritate my lungs and actually make things worse. I also can't seem to gain any weight which is troubling. seriously considering transplant now.
I have been other posts and some have waited until they have sub 20% lung function. I can't see myself waiting that long. I know how difficult life is at 26% that I really don't want to know what 19% is like.
Dave 38/cf
I have been other posts and some have waited until they have sub 20% lung function. I can't see myself waiting that long. I know how difficult life is at 26% that I really don't want to know what 19% is like.
Dave 38/cf
I initially posted this message in september but now in February my lung functionhas dropped 3% down to 26% and I am struggling. I have trouble just walking around a grocerie store. I can't take inhaled antibiotics as they really irritate my lungs and actually make things worse. I also can't seem to gain any weight which is troubling. seriously considering transplant now.
I have been other posts and some have waited until they have sub 20% lung function. I can't see myself waiting that long. I know how difficult life is at 26% that I really don't want to know what 19% is like.
Dave 38/cf
I have been other posts and some have waited until they have sub 20% lung function. I can't see myself waiting that long. I know how difficult life is at 26% that I really don't want to know what 19% is like.
Dave 38/cf
Dave, you should stop waiting to see what may happen because it won't be pretty. Get listed asap. It won't mean you get a new set of lungs by the end of the week. When you're listed, sit back and take care of yourself. Some wait 2 years!
THEN, when the time comes and you get sicker, you'll simply be moved up the list. You must realize this: you will need a TX sooner than later. Putting it off won't solve anything. Don't wait for a doctor to tell you or wonder if getting a TX will lead to a full time job, etc. Save your own life today. Good luck!
THEN, when the time comes and you get sicker, you'll simply be moved up the list. You must realize this: you will need a TX sooner than later. Putting it off won't solve anything. Don't wait for a doctor to tell you or wonder if getting a TX will lead to a full time job, etc. Save your own life today. Good luck!
Dave, you should stop waiting to see what may happen because it won't be pretty. Get listed asap. It won't mean you get a new set of lungs by the end of the week. When you're listed, sit back and take care of yourself. Some wait 2 years!
THEN, when the time comes and you get sicker, you'll simply be moved up the list. You must realize this: you will need a TX sooner than later. Putting it off won't solve anything. Don't wait for a doctor to tell you or wonder if getting a TX will lead to a full time job, etc. Save your own life today. Good luck!
THEN, when the time comes and you get sicker, you'll simply be moved up the list. You must realize this: you will need a TX sooner than later. Putting it off won't solve anything. Don't wait for a doctor to tell you or wonder if getting a TX will lead to a full time job, etc. Save your own life today. Good luck!
1
1BumLung
Guest
Dave,
You've received some wise counsel over the period of this conversation. Good to have others' perspectives. You got to admire the last guy (TX Nov09, NYC Marathon Nov10!).
Diagnosed as a child, I still pushed myself, and was mountain climbing and cross-country biiking at age 30. Then my FEV1 went down in the low 20's for a while ten years ago (when I was 40yrs old). My doc charted my recent lung decrease over time. The graph showed I might survive 18 months. The xplnt list was taking two years (old system). I got on the list, and began to put my effects in order (I had a wife and two kids in middle school at the time).
Then my lung function came back up into the 30's. After a year there, I asked to be excused from the list. My lungs went up into the 40's in the ensuing years. Even hit 50% once a couple years back! WooHoo! I was biking, hiking, and refurbishing houses for fun and profit!
Now I'm 50. My lungs have recently plummetted back down in the low 20's. Went back the xplnt team. While testing me to re-qualify for a transplant, they discovered a heart problem. They say the heart would not survive a tranplant surgery. (But the heart surgery would be too much on these lungs.) So now I'm trying to find creative alternative.
Still working my desk job full time- though about half of it can be done from my home office while doing lung clearance.
I'd join those who encourage you to go for it soon. It can be a bit of a wait even on the new system. If your lung function comes back up, you can pass until you really need them.
You've received some wise counsel over the period of this conversation. Good to have others' perspectives. You got to admire the last guy (TX Nov09, NYC Marathon Nov10!).
Diagnosed as a child, I still pushed myself, and was mountain climbing and cross-country biiking at age 30. Then my FEV1 went down in the low 20's for a while ten years ago (when I was 40yrs old). My doc charted my recent lung decrease over time. The graph showed I might survive 18 months. The xplnt list was taking two years (old system). I got on the list, and began to put my effects in order (I had a wife and two kids in middle school at the time).
Then my lung function came back up into the 30's. After a year there, I asked to be excused from the list. My lungs went up into the 40's in the ensuing years. Even hit 50% once a couple years back! WooHoo! I was biking, hiking, and refurbishing houses for fun and profit!
Now I'm 50. My lungs have recently plummetted back down in the low 20's. Went back the xplnt team. While testing me to re-qualify for a transplant, they discovered a heart problem. They say the heart would not survive a tranplant surgery. (But the heart surgery would be too much on these lungs.) So now I'm trying to find creative alternative.
Still working my desk job full time- though about half of it can be done from my home office while doing lung clearance.
I'd join those who encourage you to go for it soon. It can be a bit of a wait even on the new system. If your lung function comes back up, you can pass until you really need them.
1
1BumLung
Guest
Dave,
You've received some wise counsel over the period of this conversation. Good to have others' perspectives. You got to admire the last guy (TX Nov09, NYC Marathon Nov10!).
Diagnosed as a child, I still pushed myself, and was mountain climbing and cross-country biiking at age 30. Then my FEV1 went down in the low 20's for a while ten years ago (when I was 40yrs old). My doc charted my recent lung decrease over time. The graph showed I might survive 18 months. The xplnt list was taking two years (old system). I got on the list, and began to put my effects in order (I had a wife and two kids in middle school at the time).
Then my lung function came back up into the 30's. After a year there, I asked to be excused from the list. My lungs went up into the 40's in the ensuing years. Even hit 50% once a couple years back! WooHoo! I was biking, hiking, and refurbishing houses for fun and profit!
Now I'm 50. My lungs have recently plummetted back down in the low 20's. Went back the xplnt team. While testing me to re-qualify for a transplant, they discovered a heart problem. They say the heart would not survive a tranplant surgery. (But the heart surgery would be too much on these lungs.) So now I'm trying to find creative alternative.
Still working my desk job full time- though about half of it can be done from my home office while doing lung clearance.
I'd join those who encourage you to go for it soon. It can be a bit of a wait even on the new system. If your lung function comes back up, you can pass until you really need them.
You've received some wise counsel over the period of this conversation. Good to have others' perspectives. You got to admire the last guy (TX Nov09, NYC Marathon Nov10!).
Diagnosed as a child, I still pushed myself, and was mountain climbing and cross-country biiking at age 30. Then my FEV1 went down in the low 20's for a while ten years ago (when I was 40yrs old). My doc charted my recent lung decrease over time. The graph showed I might survive 18 months. The xplnt list was taking two years (old system). I got on the list, and began to put my effects in order (I had a wife and two kids in middle school at the time).
Then my lung function came back up into the 30's. After a year there, I asked to be excused from the list. My lungs went up into the 40's in the ensuing years. Even hit 50% once a couple years back! WooHoo! I was biking, hiking, and refurbishing houses for fun and profit!
Now I'm 50. My lungs have recently plummetted back down in the low 20's. Went back the xplnt team. While testing me to re-qualify for a transplant, they discovered a heart problem. They say the heart would not survive a tranplant surgery. (But the heart surgery would be too much on these lungs.) So now I'm trying to find creative alternative.
Still working my desk job full time- though about half of it can be done from my home office while doing lung clearance.
I'd join those who encourage you to go for it soon. It can be a bit of a wait even on the new system. If your lung function comes back up, you can pass until you really need them.
Joblazer86
New member
I would list yourself.
I didnt think that I needed a transplant soon but my lung functions were in the teens. I flirted with this number for 3 years until I caved in and was listed. At anytime though I could have gotten a severe infection and had been deemed not healthy enough to have the surgery. It is a very tough decision but you would benefit by being listed.
I didnt think that I needed a transplant soon but my lung functions were in the teens. I flirted with this number for 3 years until I caved in and was listed. At anytime though I could have gotten a severe infection and had been deemed not healthy enough to have the surgery. It is a very tough decision but you would benefit by being listed.
Joblazer86
New member
I would list yourself.
I didnt think that I needed a transplant soon but my lung functions were in the teens. I flirted with this number for 3 years until I caved in and was listed. At anytime though I could have gotten a severe infection and had been deemed not healthy enough to have the surgery. It is a very tough decision but you would benefit by being listed.
I didnt think that I needed a transplant soon but my lung functions were in the teens. I flirted with this number for 3 years until I caved in and was listed. At anytime though I could have gotten a severe infection and had been deemed not healthy enough to have the surgery. It is a very tough decision but you would benefit by being listed.