PDA

View Full Version : at what point is transplant suggested?



Jane
10-15-2010, 06:28 PM
At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.

Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.

He has been on IVs a lot this year, but his sats are high and his energy level is good.

We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

Jane
10-15-2010, 06:28 PM
At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.

Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.

He has been on IVs a lot this year, but his sats are high and his energy level is good.

We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

Jane
10-15-2010, 06:28 PM
At Jesse's clinic appointment yesterday his doctor suggested we talk to the transplant team. We were completely shocked.
<br />
<br />Jesse's pfts have gone between 60 and 41 this year- mostly in the 50s.
<br />
<br />He has been on IVs a lot this year, but his sats are high and his energy level is good.
<br />
<br />We know his doctor tends to be very aggressive, but isn't it soon to be talking transplant?

tleigh
10-15-2010, 07:25 PM
Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

tleigh
10-15-2010, 07:25 PM
Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

tleigh
10-15-2010, 07:25 PM
Jane
When you hear transplant that can be scary. I have just been faced with this conversation the past month. For me, the doctor's concern is that it could take one really bad round of infections to really do a number on my lungs. So, they have encouraged me to start the process and to get my "ducks in a row" so to speak. To start the eval process while I am healthy enough to get through it all and then if it is a while before I am actively listed-great! Everything will be in place if and when it is necessary. I guess for me I want it to happen at just the right time when I am sick enough but not too sick.

Know also that this (like the rest of CF) is very individual. Meaning, for one their quality of life could be just fine w/ pft's in the 30's for another their QOF stinks and pft's are in their 50's. So it's a very personal choice.

mag6125
10-15-2010, 07:31 PM
Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.

Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

mag6125
10-15-2010, 07:31 PM
Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.

Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

mag6125
10-15-2010, 07:31 PM
Wow that does seem soon, my docs started talking to me about it when my pfts were consistantly below 30%. I didn't actually go for evaluation until my pfts were around 24% and not going back up anymore. They said they start talking about it/referring people then because they feel its better to be proactive and have us seen by the team so they know who we are and have them say not now but come back in 6 months or so. They also do this because they've had people put it off who then get real sick real fast and are too sick to go through the evaluation. They have told me that if I were to be admitted to the hospital being very very sick they would go ahead and transfer me to Cleveland Clinic where the transplant team is so I'd be there if/when new lungs came.
<br />
<br />Did they say why they want to talk to the transplant team so soon? That really does seem too soon, but that's my own opinion. Are they maybe concerned that with being on ivs so much that his pfts are dropping and not getting as much bounce back? If you want to ask me anything about my eval or decision on when to do it feel free to pm me!

CountryGirl
10-16-2010, 12:18 AM
It may be soon to be talking about tx but its all relative.

The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.

It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

CountryGirl
10-16-2010, 12:18 AM
It may be soon to be talking about tx but its all relative.

The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.

It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

CountryGirl
10-16-2010, 12:18 AM
It may be soon to be talking about tx but its all relative.
<br />
<br />The drs may be looking at the patterns in which Jesse's pfts are dropping and have been dropping over the past year or two. Also they may just want you to be prepared incase something drastic happens and he doesnt bounce back next time.
<br />
<br />It's always best to be prepared and know what to expect....also since Jesse is only 15, the list is different than for adults. Children get lungs based on how long they've been on the list, not how sick they are, so that may be another reason they want to start talking about it now.

AimeeSue82
10-16-2010, 02:44 AM
It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.

~Aimee, 27 CF with MRSA

AimeeSue82
10-16-2010, 02:44 AM
It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.

~Aimee, 27 CF with MRSA

AimeeSue82
10-16-2010, 02:44 AM
It's my understanding that PFT's have to be below 30 at their best before you can get listed. Someone with PFTs of 40 or 50 would not be eligible for tx even if their quality of life is poor. I currently have a friend who is trying to get listed with FEV 24%, but because she moved from a high altitude environment to a low one and doesn't require 24 hour oxygen, she's not eligible yet. The tx evaluation process is long and difficult with lots of physical tests (CT's, PFT's, labs, etc) but also difficult emotionally. They interview the patient and their family to make sure everyone is ready and the pt has a strong support system. Lots of talking to social workers and counselors. I had a dr bring up tx with me once mainly to scare me. I had a bad year and once was admitted below 30% and he said "if you stay this low, we'll have to discuss transplant." That got my butt in gear!! Perhaps it's just a precautionary warning.
<br />
<br />~Aimee, 27 CF with MRSA

Jane
10-16-2010, 10:14 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
I had a dr bring up tx with me once mainly to scare me.
~Aimee, 27 CF with MRSA</end quote></div>

I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.

She did the same kind of thing when the kids needed g-tubes.

Jane
10-16-2010, 10:14 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
I had a dr bring up tx with me once mainly to scare me.
~Aimee, 27 CF with MRSA</end quote>

I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.

She did the same kind of thing when the kids needed g-tubes.

Jane
10-16-2010, 10:14 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AimeeSue82</b></i>
<br /> I had a dr bring up tx with me once mainly to scare me.
<br />~Aimee, 27 CF with MRSA</end quote>
<br />
<br />I have a feeling this is part of it. Our doc wants Jesse to have the nissen surgery and we weren't ready. By bringing up transplant, she might be trying to encourage us to agree to the less scary option.
<br />
<br />She did the same kind of thing when the kids needed g-tubes.

JORDYSMOM
10-16-2010, 01:17 PM
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.


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.

If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">

Stacey

JORDYSMOM
10-16-2010, 01:17 PM
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.


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.

If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">

Stacey

JORDYSMOM
10-16-2010, 01:17 PM
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.
<br />
<br />If you need to talk, call me. ((((hugs)))) <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey

theLostMiler
10-16-2010, 05:07 PM
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
10-16-2010, 05:07 PM
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
10-16-2010, 05:07 PM
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
10-17-2010, 12:39 PM
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
10-17-2010, 12:39 PM
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
10-17-2010, 12:39 PM
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
10-18-2010, 12:16 AM
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
10-18-2010, 12:16 AM
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
10-18-2010, 12:16 AM
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.