transplant

[shamrock]

It depends on a lot of factors not just the PFT numbers.

A lot of it has to do with quality of life and life expectancy. For me, even on the day of my transplant I wasn't on oxygen 24hours a day. I had one infection rolling into the next, which resulted in constant stay on IVs, which brought with it weight loss and other constant problems. Also, with infection after infection came weakness, and of course the real threat that the next one could be the one to pop me!

To answer your question, I think my PFTS were about 24-26% when I got my tx.

 

[jfarel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>

ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.

 

[jfarel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>

ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.

 

[jfarel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>

ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>



ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.</end quote></div>

I would say that you are in deep denial!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>



ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.</end quote></div>

I would say that you are in deep denial!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jfarel</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfboy</b></i>



ok well thanks i just know i get alot of different takes on that subject... ok 1 last question if your doctor said you should get a transplant but you felt like you were in the best shape of your life what would you do?</end quote></div>


Not a realistic question. Are you kidding me.</end quote></div>

I would say that you are in deep denial!

 

[katyf13]

As soon as you are in the 30's they should be preparing you for getting listed. You do not want to wait unti it is too tiring to do everything involved in getting evaluated. When you are in the 30's, at least start the process and get the ball rolling. Thank god Mike got listed in his 30's because we are STILL waiting for a size/blood type match almost 2 years later. (And he is at 20% on his very best days)

 

[katyf13]

As soon as you are in the 30's they should be preparing you for getting listed. You do not want to wait unti it is too tiring to do everything involved in getting evaluated. When you are in the 30's, at least start the process and get the ball rolling. Thank god Mike got listed in his 30's because we are STILL waiting for a size/blood type match almost 2 years later. (And he is at 20% on his very best days)

 

[katyf13]

As soon as you are in the 30's they should be preparing you for getting listed. You do not want to wait unti it is too tiring to do everything involved in getting evaluated. When you are in the 30's, at least start the process and get the ball rolling. Thank god Mike got listed in his 30's because we are STILL waiting for a size/blood type match almost 2 years later. (And he is at 20% on his very best days)

 

[EnergyGal]

I understand the person who is skeptical when their doctor tells them that they need a transplant. They could be leading a perfectly normal life, not needing oxygen and exercising at a good pace. If you are a good lung transplant candidate, they will probably tell you that your heart might be getting larger, your pft's are not getting better and you cannot keep your weight up after a number of infections.

You may not need a transplant for two years but they look at the trend. Do not be alarmed but take action is what I say. Think about it but do not worry about it. It is an option for many and if you think it might be something that you would want possibly one day, then look into it.

Some patients get the scare of their lifetime and they start exercising more frequently, adding more vest sessions and gain weight and they are no longer a lung transplant candidate. They become healthy again and taken off the active list or if they are not already listed, they can put off the evaluation process for a few years.

I have heard of this happening more than a couple of times to three people that I knew. If you are at that stage where you do not need a transplant but your doctors mention it, my suggestion would be to start taking better care of yourself so you can prolong your CF lungs as long as possible.

I had two lung transplants and I too was in denial for the first pair. I believe if I was not a tall lady, I would not be here today. I did not wait long the first time or the second time because of my height and blood type. It is also depends on the group of people who are in front of you and many more factors. They look for a great match before they transplant you. I was very sick the first time around and I do not know how much more time I had. I was on Bipap and the call came in after a few days.

 

[EnergyGal]

I understand the person who is skeptical when their doctor tells them that they need a transplant. They could be leading a perfectly normal life, not needing oxygen and exercising at a good pace. If you are a good lung transplant candidate, they will probably tell you that your heart might be getting larger, your pft's are not getting better and you cannot keep your weight up after a number of infections.

You may not need a transplant for two years but they look at the trend. Do not be alarmed but take action is what I say. Think about it but do not worry about it. It is an option for many and if you think it might be something that you would want possibly one day, then look into it.

Some patients get the scare of their lifetime and they start exercising more frequently, adding more vest sessions and gain weight and they are no longer a lung transplant candidate. They become healthy again and taken off the active list or if they are not already listed, they can put off the evaluation process for a few years.

I have heard of this happening more than a couple of times to three people that I knew. If you are at that stage where you do not need a transplant but your doctors mention it, my suggestion would be to start taking better care of yourself so you can prolong your CF lungs as long as possible.

I had two lung transplants and I too was in denial for the first pair. I believe if I was not a tall lady, I would not be here today. I did not wait long the first time or the second time because of my height and blood type. It is also depends on the group of people who are in front of you and many more factors. They look for a great match before they transplant you. I was very sick the first time around and I do not know how much more time I had. I was on Bipap and the call came in after a few days.

 

[EnergyGal]

I understand the person who is skeptical when their doctor tells them that they need a transplant. They could be leading a perfectly normal life, not needing oxygen and exercising at a good pace. If you are a good lung transplant candidate, they will probably tell you that your heart might be getting larger, your pft's are not getting better and you cannot keep your weight up after a number of infections.

You may not need a transplant for two years but they look at the trend. Do not be alarmed but take action is what I say. Think about it but do not worry about it. It is an option for many and if you think it might be something that you would want possibly one day, then look into it.

Some patients get the scare of their lifetime and they start exercising more frequently, adding more vest sessions and gain weight and they are no longer a lung transplant candidate. They become healthy again and taken off the active list or if they are not already listed, they can put off the evaluation process for a few years.

I have heard of this happening more than a couple of times to three people that I knew. If you are at that stage where you do not need a transplant but your doctors mention it, my suggestion would be to start taking better care of yourself so you can prolong your CF lungs as long as possible.

I had two lung transplants and I too was in denial for the first pair. I believe if I was not a tall lady, I would not be here today. I did not wait long the first time or the second time because of my height and blood type. It is also depends on the group of people who are in front of you and many more factors. They look for a great match before they transplant you. I was very sick the first time around and I do not know how much more time I had. I was on Bipap and the call came in after a few days.

 

[jfarel]

Okay, so once your listed that means as soon as they have your match you will get transplanted. I'm a little confused. Aren't there people ahead of you if you have higher pft's. So they will list you in the 30's, but I can't imagine being and the 30's and even feeling bad enough for a transplant. Last appointment I was 27 percent and I don't feel bad enough for a transplant. I still work and am not on any oxygen at all and my o2 is between 92-94 unless I'm sick and it will drop to maybe 90-92. My BMI is on the low side but its been worse. I am also pre-diabetic but I don't yet need insulin.

 

[jfarel]

Okay, so once your listed that means as soon as they have your match you will get transplanted. I'm a little confused. Aren't there people ahead of you if you have higher pft's. So they will list you in the 30's, but I can't imagine being and the 30's and even feeling bad enough for a transplant. Last appointment I was 27 percent and I don't feel bad enough for a transplant. I still work and am not on any oxygen at all and my o2 is between 92-94 unless I'm sick and it will drop to maybe 90-92. My BMI is on the low side but its been worse. I am also pre-diabetic but I don't yet need insulin.

 

[jfarel]

Okay, so once your listed that means as soon as they have your match you will get transplanted. I'm a little confused. Aren't there people ahead of you if you have higher pft's. So they will list you in the 30's, but I can't imagine being and the 30's and even feeling bad enough for a transplant. Last appointment I was 27 percent and I don't feel bad enough for a transplant. I still work and am not on any oxygen at all and my o2 is between 92-94 unless I'm sick and it will drop to maybe 90-92. My BMI is on the low side but its been worse. I am also pre-diabetic but I don't yet need insulin.

 

[Lilith]

Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...

 

[Lilith]

Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...

 

[Lilith]

Put it this way; even though you might think you feel good, I would guess 27% has been the norm for you for a little while, right? You've probably simply gotten used to being at that level, therefore you don't notice it. Having CF progress is slow and most times undetectable by the patient alone. I don't think any CFers (unless they've been transplanted, of course) know what its like to really feel good and breathe well, therefore, its one of those "you don't know what you're missing" things. Just food for thought...

 

[katyf13]

You probably won't get called if you are in your 30's because other people with lower pft's will have higher lung allocation scores. When Mike was originally listed he was at about 30%, didn't use O2 at all. We went for long walks all the time, with a few breaks. Shortly after that, he started requiring O2 at night, then sporadically throughout the day, then eventually all day. His pfts have steadily dropped since then. He is very happy that he went through the eval process while he still had the energy. When he went through it again to get listed in Cleveland, it was much more difficult, but luckily they accepted a lot of what he had already done in Boston. There is nothing to be afraid of as far as getting evaluated. It is a great opportunity to have all of your questions answered. And you DO NOT have to be listed just because you are evaluated... that is totally your choice. And it is not held against you.