A Question for all Transplanted CFers....

[Lex]

I was wondering that since the FDA sucks, and the drug companies will no doubt drag out a cure to CF for at least 20 years, there's a decent chance that someday I will need a TX. So.......

......can you guys tell me a little about life expectancy and your quality of life today? I think it would ease my mind to hear your thoughts on it. Thanks! I appreciate it.

 

[Lex]

I was wondering that since the FDA sucks, and the drug companies will no doubt drag out a cure to CF for at least 20 years, there's a decent chance that someday I will need a TX. So.......

......can you guys tell me a little about life expectancy and your quality of life today? I think it would ease my mind to hear your thoughts on it. Thanks! I appreciate it.

 

[Lex]

I was wondering that since the FDA sucks, and the drug companies will no doubt drag out a cure to CF for at least 20 years, there's a decent chance that someday I will need a TX. So.......

......can you guys tell me a little about life expectancy and your quality of life today? I think it would ease my mind to hear your thoughts on it. Thanks! I appreciate it.

 

[Lex]

I was wondering that since the FDA sucks, and the drug companies will no doubt drag out a cure to CF for at least 20 years, there's a decent chance that someday I will need a TX. So.......

......can you guys tell me a little about life expectancy and your quality of life today? I think it would ease my mind to hear your thoughts on it. Thanks! I appreciate it.

 

[Lex]

I was wondering that since the FDA sucks, and the drug companies will no doubt drag out a cure to CF for at least 20 years, there's a decent chance that someday I will need a TX. So.......
<br />
<br />......can you guys tell me a little about life expectancy and your quality of life today? I think it would ease my mind to hear your thoughts on it. Thanks! I appreciate it.

 

[ladybug]

Hey, Lex...

I'm not a tx candidate or recipient yet, but wanted to mention (on a positive note) that hopefully by the time we'd need a tx, they will also have better rates of tx and better results, better rejection drugs and methods of keeping tx'd lungs healthy.

Just a side-note.

But I too am interested to hear what others say re: their transplant experiences.

 

[ladybug]

Hey, Lex...

I'm not a tx candidate or recipient yet, but wanted to mention (on a positive note) that hopefully by the time we'd need a tx, they will also have better rates of tx and better results, better rejection drugs and methods of keeping tx'd lungs healthy.

Just a side-note.

But I too am interested to hear what others say re: their transplant experiences.

 

[ladybug]

Hey, Lex...

I'm not a tx candidate or recipient yet, but wanted to mention (on a positive note) that hopefully by the time we'd need a tx, they will also have better rates of tx and better results, better rejection drugs and methods of keeping tx'd lungs healthy.

Just a side-note.

But I too am interested to hear what others say re: their transplant experiences.

 

[ladybug]

Hey, Lex...

I'm not a tx candidate or recipient yet, but wanted to mention (on a positive note) that hopefully by the time we'd need a tx, they will also have better rates of tx and better results, better rejection drugs and methods of keeping tx'd lungs healthy.

Just a side-note.

But I too am interested to hear what others say re: their transplant experiences.

 

[ladybug]

Hey, Lex...
<br />
<br />I'm not a tx candidate or recipient yet, but wanted to mention (on a positive note) that hopefully by the time we'd need a tx, they will also have better rates of tx and better results, better rejection drugs and methods of keeping tx'd lungs healthy.
<br />
<br />Just a side-note.
<br />
<br />But I too am interested to hear what others say re: their transplant experiences.

 

[Transplantmommy]

Hey Lex. From what I was told at my first evaluations in June 2005, there were 5 people in the room and if we all had double lung 2 would have passed in the first year and 1-2 would still be alive after 5 years, and some would live longer than that. I say to h*ll with the statistics though because they suck!

On January 31 I will be 2 years post Tx and I am doing really well. There were soooo many things that I could not do before the Tx and today I am doing a whole lot more. I stay at home with my son still because I had a few problems after the Tx with my colon and had it removed and it was also not a good idea for me to go back to work yet because of how immunosuppressed I was. I do other things though like take Brady to the zoo and can do my normal housework that I was not able to do for 2 years or more. I now only have to take pills. No more breathing treatments, no more CPT, and a lot less hospitalizations! The last time that I was in the hospital was in March this year and that was for a bowel obstruction. I have not gone 7 months without being in the hospital for at least 10 years so this feels amazing to me!

I hope that this helps you. Let me know if you want to know anything else. I am very pro-transplant and love to help people.

 

[Transplantmommy]

Hey Lex. From what I was told at my first evaluations in June 2005, there were 5 people in the room and if we all had double lung 2 would have passed in the first year and 1-2 would still be alive after 5 years, and some would live longer than that. I say to h*ll with the statistics though because they suck!

On January 31 I will be 2 years post Tx and I am doing really well. There were soooo many things that I could not do before the Tx and today I am doing a whole lot more. I stay at home with my son still because I had a few problems after the Tx with my colon and had it removed and it was also not a good idea for me to go back to work yet because of how immunosuppressed I was. I do other things though like take Brady to the zoo and can do my normal housework that I was not able to do for 2 years or more. I now only have to take pills. No more breathing treatments, no more CPT, and a lot less hospitalizations! The last time that I was in the hospital was in March this year and that was for a bowel obstruction. I have not gone 7 months without being in the hospital for at least 10 years so this feels amazing to me!

I hope that this helps you. Let me know if you want to know anything else. I am very pro-transplant and love to help people.

 

[Transplantmommy]

Hey Lex. From what I was told at my first evaluations in June 2005, there were 5 people in the room and if we all had double lung 2 would have passed in the first year and 1-2 would still be alive after 5 years, and some would live longer than that. I say to h*ll with the statistics though because they suck!

On January 31 I will be 2 years post Tx and I am doing really well. There were soooo many things that I could not do before the Tx and today I am doing a whole lot more. I stay at home with my son still because I had a few problems after the Tx with my colon and had it removed and it was also not a good idea for me to go back to work yet because of how immunosuppressed I was. I do other things though like take Brady to the zoo and can do my normal housework that I was not able to do for 2 years or more. I now only have to take pills. No more breathing treatments, no more CPT, and a lot less hospitalizations! The last time that I was in the hospital was in March this year and that was for a bowel obstruction. I have not gone 7 months without being in the hospital for at least 10 years so this feels amazing to me!

I hope that this helps you. Let me know if you want to know anything else. I am very pro-transplant and love to help people.

 

[Transplantmommy]

Hey Lex. From what I was told at my first evaluations in June 2005, there were 5 people in the room and if we all had double lung 2 would have passed in the first year and 1-2 would still be alive after 5 years, and some would live longer than that. I say to h*ll with the statistics though because they suck!

On January 31 I will be 2 years post Tx and I am doing really well. There were soooo many things that I could not do before the Tx and today I am doing a whole lot more. I stay at home with my son still because I had a few problems after the Tx with my colon and had it removed and it was also not a good idea for me to go back to work yet because of how immunosuppressed I was. I do other things though like take Brady to the zoo and can do my normal housework that I was not able to do for 2 years or more. I now only have to take pills. No more breathing treatments, no more CPT, and a lot less hospitalizations! The last time that I was in the hospital was in March this year and that was for a bowel obstruction. I have not gone 7 months without being in the hospital for at least 10 years so this feels amazing to me!

I hope that this helps you. Let me know if you want to know anything else. I am very pro-transplant and love to help people.

 

[Transplantmommy]

Hey Lex. From what I was told at my first evaluations in June 2005, there were 5 people in the room and if we all had double lung 2 would have passed in the first year and 1-2 would still be alive after 5 years, and some would live longer than that. I say to h*ll with the statistics though because they suck!
<br />
<br />On January 31 I will be 2 years post Tx and I am doing really well. There were soooo many things that I could not do before the Tx and today I am doing a whole lot more. I stay at home with my son still because I had a few problems after the Tx with my colon and had it removed and it was also not a good idea for me to go back to work yet because of how immunosuppressed I was. I do other things though like take Brady to the zoo and can do my normal housework that I was not able to do for 2 years or more. I now only have to take pills. No more breathing treatments, no more CPT, and a lot less hospitalizations! The last time that I was in the hospital was in March this year and that was for a bowel obstruction. I have not gone 7 months without being in the hospital for at least 10 years so this feels amazing to me!
<br />
<br />I hope that this helps you. Let me know if you want to know anything else. I am very pro-transplant and love to help people.

 

[summer732]

Try not to focus on statistics. That will only tell you how a group of people will do during the transplant journey, not how you will do specifically.

I will be 4 years post transplant on November 11th. Another one of my good friends will be out of her transplant 11 years in the middle of October.

My life now is like it never was before. I take some pills in the morning and at night. I work with the best of them, and play with the best of them. I'm able to put 8-10 hours in at work and then head to the gym and still have energy for my friends and family. Working out after transplant is a huge part of feeling great and keeping those lungs healthy. I have dealt with some bumps in the road...colds, a pneumonia, and recurrent sinus surgeries...but life, for the first time is AMAZING.

But remember, for as many people out there with a story of success there are two with a story that is not so "sunshine and rainbows". Do your research and read both sides of the story so that you can make an informed decision of what is right for YOU.

all the best.

 

[summer732]

Try not to focus on statistics. That will only tell you how a group of people will do during the transplant journey, not how you will do specifically.

I will be 4 years post transplant on November 11th. Another one of my good friends will be out of her transplant 11 years in the middle of October.

My life now is like it never was before. I take some pills in the morning and at night. I work with the best of them, and play with the best of them. I'm able to put 8-10 hours in at work and then head to the gym and still have energy for my friends and family. Working out after transplant is a huge part of feeling great and keeping those lungs healthy. I have dealt with some bumps in the road...colds, a pneumonia, and recurrent sinus surgeries...but life, for the first time is AMAZING.

But remember, for as many people out there with a story of success there are two with a story that is not so "sunshine and rainbows". Do your research and read both sides of the story so that you can make an informed decision of what is right for YOU.

all the best.

 

[summer732]

Try not to focus on statistics. That will only tell you how a group of people will do during the transplant journey, not how you will do specifically.

I will be 4 years post transplant on November 11th. Another one of my good friends will be out of her transplant 11 years in the middle of October.

My life now is like it never was before. I take some pills in the morning and at night. I work with the best of them, and play with the best of them. I'm able to put 8-10 hours in at work and then head to the gym and still have energy for my friends and family. Working out after transplant is a huge part of feeling great and keeping those lungs healthy. I have dealt with some bumps in the road...colds, a pneumonia, and recurrent sinus surgeries...but life, for the first time is AMAZING.

But remember, for as many people out there with a story of success there are two with a story that is not so "sunshine and rainbows". Do your research and read both sides of the story so that you can make an informed decision of what is right for YOU.

all the best.

 

[summer732]

Try not to focus on statistics. That will only tell you how a group of people will do during the transplant journey, not how you will do specifically.

I will be 4 years post transplant on November 11th. Another one of my good friends will be out of her transplant 11 years in the middle of October.

My life now is like it never was before. I take some pills in the morning and at night. I work with the best of them, and play with the best of them. I'm able to put 8-10 hours in at work and then head to the gym and still have energy for my friends and family. Working out after transplant is a huge part of feeling great and keeping those lungs healthy. I have dealt with some bumps in the road...colds, a pneumonia, and recurrent sinus surgeries...but life, for the first time is AMAZING.

But remember, for as many people out there with a story of success there are two with a story that is not so "sunshine and rainbows". Do your research and read both sides of the story so that you can make an informed decision of what is right for YOU.

all the best.

 

[summer732]

Try not to focus on statistics. That will only tell you how a group of people will do during the transplant journey, not how you will do specifically.
<br />
<br />I will be 4 years post transplant on November 11th. Another one of my good friends will be out of her transplant 11 years in the middle of October.
<br />
<br />My life now is like it never was before. I take some pills in the morning and at night. I work with the best of them, and play with the best of them. I'm able to put 8-10 hours in at work and then head to the gym and still have energy for my friends and family. Working out after transplant is a huge part of feeling great and keeping those lungs healthy. I have dealt with some bumps in the road...colds, a pneumonia, and recurrent sinus surgeries...but life, for the first time is AMAZING.
<br />
<br />But remember, for as many people out there with a story of success there are two with a story that is not so "sunshine and rainbows". Do your research and read both sides of the story so that you can make an informed decision of what is right for YOU.
<br />
<br />all the best.