At what point do dr's start talking tx?

coltsfan715

New member
I agree with everything mentioned above. I know my docs looked at everything Skye mentioned.

I also have found that being proactive in your own care is important - meaning that you KNOW when to bring up transplant if it is not brought up to you. I had to bring it up to my doc at the time because I had asked about it in high school. I knew I was about at that level. I had a hard time expressing to my doc my concerns apparently cause the doc at the time refused to refer me for evaluation (can anyone say moron). I went to several docs before I found one that would refer me to just get evaluated. I am glad I did - by all outward appearances I was fine except I was getting sick constantly and my PFTs were low. Turned out I needed to be on O2 and I had developed heart issues (I knew I felt bad). So yeah all of those things make a difference.

It never hurts to bring it up to your doc and I agree it is easier to go through everything when you are on the healthy side of sick. Some of the tests can be a bit overwhelming to say the least if you are extremely sick.

Take Care
Linds
 

coltsfan715

New member
I agree with everything mentioned above. I know my docs looked at everything Skye mentioned.

I also have found that being proactive in your own care is important - meaning that you KNOW when to bring up transplant if it is not brought up to you. I had to bring it up to my doc at the time because I had asked about it in high school. I knew I was about at that level. I had a hard time expressing to my doc my concerns apparently cause the doc at the time refused to refer me for evaluation (can anyone say moron). I went to several docs before I found one that would refer me to just get evaluated. I am glad I did - by all outward appearances I was fine except I was getting sick constantly and my PFTs were low. Turned out I needed to be on O2 and I had developed heart issues (I knew I felt bad). So yeah all of those things make a difference.

It never hurts to bring it up to your doc and I agree it is easier to go through everything when you are on the healthy side of sick. Some of the tests can be a bit overwhelming to say the least if you are extremely sick.

Take Care
Linds
 

coltsfan715

New member
I agree with everything mentioned above. I know my docs looked at everything Skye mentioned.

I also have found that being proactive in your own care is important - meaning that you KNOW when to bring up transplant if it is not brought up to you. I had to bring it up to my doc at the time because I had asked about it in high school. I knew I was about at that level. I had a hard time expressing to my doc my concerns apparently cause the doc at the time refused to refer me for evaluation (can anyone say moron). I went to several docs before I found one that would refer me to just get evaluated. I am glad I did - by all outward appearances I was fine except I was getting sick constantly and my PFTs were low. Turned out I needed to be on O2 and I had developed heart issues (I knew I felt bad). So yeah all of those things make a difference.

It never hurts to bring it up to your doc and I agree it is easier to go through everything when you are on the healthy side of sick. Some of the tests can be a bit overwhelming to say the least if you are extremely sick.

Take Care
Linds
 

coltsfan715

New member
I agree with everything mentioned above. I know my docs looked at everything Skye mentioned.

I also have found that being proactive in your own care is important - meaning that you KNOW when to bring up transplant if it is not brought up to you. I had to bring it up to my doc at the time because I had asked about it in high school. I knew I was about at that level. I had a hard time expressing to my doc my concerns apparently cause the doc at the time refused to refer me for evaluation (can anyone say moron). I went to several docs before I found one that would refer me to just get evaluated. I am glad I did - by all outward appearances I was fine except I was getting sick constantly and my PFTs were low. Turned out I needed to be on O2 and I had developed heart issues (I knew I felt bad). So yeah all of those things make a difference.

It never hurts to bring it up to your doc and I agree it is easier to go through everything when you are on the healthy side of sick. Some of the tests can be a bit overwhelming to say the least if you are extremely sick.

Take Care
Linds
 

coltsfan715

New member
I agree with everything mentioned above. I know my docs looked at everything Skye mentioned.

I also have found that being proactive in your own care is important - meaning that you KNOW when to bring up transplant if it is not brought up to you. I had to bring it up to my doc at the time because I had asked about it in high school. I knew I was about at that level. I had a hard time expressing to my doc my concerns apparently cause the doc at the time refused to refer me for evaluation (can anyone say moron). I went to several docs before I found one that would refer me to just get evaluated. I am glad I did - by all outward appearances I was fine except I was getting sick constantly and my PFTs were low. Turned out I needed to be on O2 and I had developed heart issues (I knew I felt bad). So yeah all of those things make a difference.

It never hurts to bring it up to your doc and I agree it is easier to go through everything when you are on the healthy side of sick. Some of the tests can be a bit overwhelming to say the least if you are extremely sick.

Take Care
Linds
 

CaliSally

New member
Thanks for all your responses. If you have anything more to add, please do.

At my next appt, I will ask questions, instead of assuming they would bring it up to me (Although they do know that I'm interested in tx if needed, something I guess is an annual question to patients). I know I'm not a great candidate for tx, but I want to know where my lungs/health stand in that respect.

Does anyone know the age of the oldest person to receive a tx? (and if applicable, how long they lived, or how long post tx ?)

Lindsey, you said you were developing heart issues? Tell me about that...what did you feel? Every once in a while I get a heart flutter. I'm trying to pay attention to when/why, but don't have anything to note, yet. I'm wondering if it's related to my BS numbers.
 

CaliSally

New member
Thanks for all your responses. If you have anything more to add, please do.

At my next appt, I will ask questions, instead of assuming they would bring it up to me (Although they do know that I'm interested in tx if needed, something I guess is an annual question to patients). I know I'm not a great candidate for tx, but I want to know where my lungs/health stand in that respect.

Does anyone know the age of the oldest person to receive a tx? (and if applicable, how long they lived, or how long post tx ?)

Lindsey, you said you were developing heart issues? Tell me about that...what did you feel? Every once in a while I get a heart flutter. I'm trying to pay attention to when/why, but don't have anything to note, yet. I'm wondering if it's related to my BS numbers.
 

CaliSally

New member
Thanks for all your responses. If you have anything more to add, please do.

At my next appt, I will ask questions, instead of assuming they would bring it up to me (Although they do know that I'm interested in tx if needed, something I guess is an annual question to patients). I know I'm not a great candidate for tx, but I want to know where my lungs/health stand in that respect.

Does anyone know the age of the oldest person to receive a tx? (and if applicable, how long they lived, or how long post tx ?)

Lindsey, you said you were developing heart issues? Tell me about that...what did you feel? Every once in a while I get a heart flutter. I'm trying to pay attention to when/why, but don't have anything to note, yet. I'm wondering if it's related to my BS numbers.
 

CaliSally

New member
Thanks for all your responses. If you have anything more to add, please do.

At my next appt, I will ask questions, instead of assuming they would bring it up to me (Although they do know that I'm interested in tx if needed, something I guess is an annual question to patients). I know I'm not a great candidate for tx, but I want to know where my lungs/health stand in that respect.

Does anyone know the age of the oldest person to receive a tx? (and if applicable, how long they lived, or how long post tx ?)

Lindsey, you said you were developing heart issues? Tell me about that...what did you feel? Every once in a while I get a heart flutter. I'm trying to pay attention to when/why, but don't have anything to note, yet. I'm wondering if it's related to my BS numbers.
 

CaliSally

New member
Thanks for all your responses. If you have anything more to add, please do.

At my next appt, I will ask questions, instead of assuming they would bring it up to me (Although they do know that I'm interested in tx if needed, something I guess is an annual question to patients). I know I'm not a great candidate for tx, but I want to know where my lungs/health stand in that respect.

Does anyone know the age of the oldest person to receive a tx? (and if applicable, how long they lived, or how long post tx ?)

Lindsey, you said you were developing heart issues? Tell me about that...what did you feel? Every once in a while I get a heart flutter. I'm trying to pay attention to when/why, but don't have anything to note, yet. I'm wondering if it's related to my BS numbers.
 

jfarel

New member
I do know non-cf patients (those with emphesyma and other lung diseases) receive transplants into their 60's. Cf patients I'm sure can receive them into their 40's and 50's if needed.


I can't speak for Lindsey but I know heart problems can be brought on by Low oxygen saturation or high CO2 levels (pulmonary hypertension).
 

jfarel

New member
I do know non-cf patients (those with emphesyma and other lung diseases) receive transplants into their 60's. Cf patients I'm sure can receive them into their 40's and 50's if needed.


I can't speak for Lindsey but I know heart problems can be brought on by Low oxygen saturation or high CO2 levels (pulmonary hypertension).
 

jfarel

New member
I do know non-cf patients (those with emphesyma and other lung diseases) receive transplants into their 60's. Cf patients I'm sure can receive them into their 40's and 50's if needed.


I can't speak for Lindsey but I know heart problems can be brought on by Low oxygen saturation or high CO2 levels (pulmonary hypertension).
 

jfarel

New member
I do know non-cf patients (those with emphesyma and other lung diseases) receive transplants into their 60's. Cf patients I'm sure can receive them into their 40's and 50's if needed.


I can't speak for Lindsey but I know heart problems can be brought on by Low oxygen saturation or high CO2 levels (pulmonary hypertension).
 

jfarel

New member
I do know non-cf patients (those with emphesyma and other lung diseases) receive transplants into their 60's. Cf patients I'm sure can receive them into their 40's and 50's if needed.


I can't speak for Lindsey but I know heart problems can be brought on by Low oxygen saturation or high CO2 levels (pulmonary hypertension).
 

coltsfan715

New member
had pulmonary hypertension as well. Mainly I had gone too long without O2 while needing it. No one knew that I needed it though. I had just taken my constant fatigue, shortness of breathe and inability to do ... oh everything ... as something that was just a part of CF as I was getting worse.

I actually went to my original doc a few years ago and point blank asked him if he would not refer me because I was untransplantable. He just stood there in shock that I would come right out with it. I just wanted to know because I felt I should have already been referred at that point. I was at 30% FEV1 and struggling with most things at that time.

I had several instances where I had heart palpitations - I went the ER at one point and they were never able to find abything. They did not find out the extent of my heart issues until I was evaluated honestly. I still remember my doc coming in the last day of my evaluation to tell me they wanted to list me and then he said also .... you need to continue wearing oxygen ALL THE TIME. You may not feel you need it, but if you don't you run the risk of needing a HEART AND LUNG transplant and you do NOT want that. I just sat there with my mouth hanging open for a second.

The day I was transplanted - during my surgery - two of the transplant docs where there and they basically came out and told my family and friends that I had been called at the perfect time because I was a ticking time bomb basically - mostly because of my heart.

It is hard to say what were signs of the heart issues - because I have so much going on or had so much going on it was hard to differentiate. I will just say that I know it sucks and is not appealling to most people - but if you require O2 wear it when they tell you too. Cause it can help prevent the heart issues I had and others had.

Have a good day,
Lindsey
 

coltsfan715

New member
had pulmonary hypertension as well. Mainly I had gone too long without O2 while needing it. No one knew that I needed it though. I had just taken my constant fatigue, shortness of breathe and inability to do ... oh everything ... as something that was just a part of CF as I was getting worse.

I actually went to my original doc a few years ago and point blank asked him if he would not refer me because I was untransplantable. He just stood there in shock that I would come right out with it. I just wanted to know because I felt I should have already been referred at that point. I was at 30% FEV1 and struggling with most things at that time.

I had several instances where I had heart palpitations - I went the ER at one point and they were never able to find abything. They did not find out the extent of my heart issues until I was evaluated honestly. I still remember my doc coming in the last day of my evaluation to tell me they wanted to list me and then he said also .... you need to continue wearing oxygen ALL THE TIME. You may not feel you need it, but if you don't you run the risk of needing a HEART AND LUNG transplant and you do NOT want that. I just sat there with my mouth hanging open for a second.

The day I was transplanted - during my surgery - two of the transplant docs where there and they basically came out and told my family and friends that I had been called at the perfect time because I was a ticking time bomb basically - mostly because of my heart.

It is hard to say what were signs of the heart issues - because I have so much going on or had so much going on it was hard to differentiate. I will just say that I know it sucks and is not appealling to most people - but if you require O2 wear it when they tell you too. Cause it can help prevent the heart issues I had and others had.

Have a good day,
Lindsey
 

coltsfan715

New member
had pulmonary hypertension as well. Mainly I had gone too long without O2 while needing it. No one knew that I needed it though. I had just taken my constant fatigue, shortness of breathe and inability to do ... oh everything ... as something that was just a part of CF as I was getting worse.

I actually went to my original doc a few years ago and point blank asked him if he would not refer me because I was untransplantable. He just stood there in shock that I would come right out with it. I just wanted to know because I felt I should have already been referred at that point. I was at 30% FEV1 and struggling with most things at that time.

I had several instances where I had heart palpitations - I went the ER at one point and they were never able to find abything. They did not find out the extent of my heart issues until I was evaluated honestly. I still remember my doc coming in the last day of my evaluation to tell me they wanted to list me and then he said also .... you need to continue wearing oxygen ALL THE TIME. You may not feel you need it, but if you don't you run the risk of needing a HEART AND LUNG transplant and you do NOT want that. I just sat there with my mouth hanging open for a second.

The day I was transplanted - during my surgery - two of the transplant docs where there and they basically came out and told my family and friends that I had been called at the perfect time because I was a ticking time bomb basically - mostly because of my heart.

It is hard to say what were signs of the heart issues - because I have so much going on or had so much going on it was hard to differentiate. I will just say that I know it sucks and is not appealling to most people - but if you require O2 wear it when they tell you too. Cause it can help prevent the heart issues I had and others had.

Have a good day,
Lindsey
 

coltsfan715

New member
had pulmonary hypertension as well. Mainly I had gone too long without O2 while needing it. No one knew that I needed it though. I had just taken my constant fatigue, shortness of breathe and inability to do ... oh everything ... as something that was just a part of CF as I was getting worse.

I actually went to my original doc a few years ago and point blank asked him if he would not refer me because I was untransplantable. He just stood there in shock that I would come right out with it. I just wanted to know because I felt I should have already been referred at that point. I was at 30% FEV1 and struggling with most things at that time.

I had several instances where I had heart palpitations - I went the ER at one point and they were never able to find abything. They did not find out the extent of my heart issues until I was evaluated honestly. I still remember my doc coming in the last day of my evaluation to tell me they wanted to list me and then he said also .... you need to continue wearing oxygen ALL THE TIME. You may not feel you need it, but if you don't you run the risk of needing a HEART AND LUNG transplant and you do NOT want that. I just sat there with my mouth hanging open for a second.

The day I was transplanted - during my surgery - two of the transplant docs where there and they basically came out and told my family and friends that I had been called at the perfect time because I was a ticking time bomb basically - mostly because of my heart.

It is hard to say what were signs of the heart issues - because I have so much going on or had so much going on it was hard to differentiate. I will just say that I know it sucks and is not appealling to most people - but if you require O2 wear it when they tell you too. Cause it can help prevent the heart issues I had and others had.

Have a good day,
Lindsey
 

coltsfan715

New member
had pulmonary hypertension as well. Mainly I had gone too long without O2 while needing it. No one knew that I needed it though. I had just taken my constant fatigue, shortness of breathe and inability to do ... oh everything ... as something that was just a part of CF as I was getting worse.

I actually went to my original doc a few years ago and point blank asked him if he would not refer me because I was untransplantable. He just stood there in shock that I would come right out with it. I just wanted to know because I felt I should have already been referred at that point. I was at 30% FEV1 and struggling with most things at that time.

I had several instances where I had heart palpitations - I went the ER at one point and they were never able to find abything. They did not find out the extent of my heart issues until I was evaluated honestly. I still remember my doc coming in the last day of my evaluation to tell me they wanted to list me and then he said also .... you need to continue wearing oxygen ALL THE TIME. You may not feel you need it, but if you don't you run the risk of needing a HEART AND LUNG transplant and you do NOT want that. I just sat there with my mouth hanging open for a second.

The day I was transplanted - during my surgery - two of the transplant docs where there and they basically came out and told my family and friends that I had been called at the perfect time because I was a ticking time bomb basically - mostly because of my heart.

It is hard to say what were signs of the heart issues - because I have so much going on or had so much going on it was hard to differentiate. I will just say that I know it sucks and is not appealling to most people - but if you require O2 wear it when they tell you too. Cause it can help prevent the heart issues I had and others had.

Have a good day,
Lindsey
 
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