Transplant Questions

[gracebazzle]

Just looking for advice from some people who've had a transplant....

-How awesome does it feel once you are all healed and mobile again???
-What are the biggest problems you've had
-Are you happy you had a transplant, what is the best thing about having had one?

I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!

 

[gracebazzle]

Just looking for advice from some people who've had a transplant....

-How awesome does it feel once you are all healed and mobile again???
-What are the biggest problems you've had
-Are you happy you had a transplant, what is the best thing about having had one?

I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!

 

[gracebazzle]

Just looking for advice from some people who've had a transplant....

-How awesome does it feel once you are all healed and mobile again???
-What are the biggest problems you've had
-Are you happy you had a transplant, what is the best thing about having had one?

I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!

 

[gracebazzle]

Just looking for advice from some people who've had a transplant....

-How awesome does it feel once you are all healed and mobile again???
-What are the biggest problems you've had
-Are you happy you had a transplant, what is the best thing about having had one?

I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!

 

[gracebazzle]

Just looking for advice from some people who've had a transplant....
<br />
<br />-How awesome does it feel once you are all healed and mobile again???
<br />-What are the biggest problems you've had
<br />-Are you happy you had a transplant, what is the best thing about having had one?
<br />
<br />I'm just starting to talk with my docs about transplant, and my older brother actually underwent a double lung transplant in 2002 and never woke up, freak accident, i know. but it puts obvious stress and doubts in my mind about the procedure. Just looking for advice and encouraging words!! thanks!

 

[summer732]

Welcome to this journey! Although it seems you have experience with this. And I'm so sorry that happened to your brother.

My life is completely different now. I don't even remember the person that I was before my transplant and my life can very clearly be cut into two parts. I'm able to do the activities I want to do without restriction. I'm more confident, happy, and it's all because I can breathe! I'm in the gym as much as possible and ran a half marathon in the spring. It's amazing how you can totally change once you are released from the uncomfortable feeling of CF and all that comes with it. Plus all the time I have without daily CPT!

The biggest problem that I have had since my transplant was my diagnosis of PTLD in July of 2009. I ended up being extremely lucky as the PTLD I had presented in my esophagus and caused tremendous pain. You are probably thinking "why is this lucky?!". The pain cued me in that something was wrong and we caught the tumor very early. The PTLD that I had was very treatable and went away quickly. However, since we messed with all of my meds to get that under control, it has thrown the rest of my body completely off. I'm still dealing with an extra frequency of doctor's appointments and trying to get everything on solid ground. I will admit, it has been the most stressful time since my transplant.

I am so happy that I had a transplant. I would have done everything the same if I had to do it over. The best thing is the fact that I can breathe. That I don't have to worry about oxygen and cpt and coughing. I'm a more pleasant person with a much happier disposition. While sometimes it seems we have a lot to juggle, CFers are used to that already. It was worth every single second and every single worry.

 

[summer732]

Welcome to this journey! Although it seems you have experience with this. And I'm so sorry that happened to your brother.

My life is completely different now. I don't even remember the person that I was before my transplant and my life can very clearly be cut into two parts. I'm able to do the activities I want to do without restriction. I'm more confident, happy, and it's all because I can breathe! I'm in the gym as much as possible and ran a half marathon in the spring. It's amazing how you can totally change once you are released from the uncomfortable feeling of CF and all that comes with it. Plus all the time I have without daily CPT!

The biggest problem that I have had since my transplant was my diagnosis of PTLD in July of 2009. I ended up being extremely lucky as the PTLD I had presented in my esophagus and caused tremendous pain. You are probably thinking "why is this lucky?!". The pain cued me in that something was wrong and we caught the tumor very early. The PTLD that I had was very treatable and went away quickly. However, since we messed with all of my meds to get that under control, it has thrown the rest of my body completely off. I'm still dealing with an extra frequency of doctor's appointments and trying to get everything on solid ground. I will admit, it has been the most stressful time since my transplant.

I am so happy that I had a transplant. I would have done everything the same if I had to do it over. The best thing is the fact that I can breathe. That I don't have to worry about oxygen and cpt and coughing. I'm a more pleasant person with a much happier disposition. While sometimes it seems we have a lot to juggle, CFers are used to that already. It was worth every single second and every single worry.

 

[summer732]

Welcome to this journey! Although it seems you have experience with this. And I'm so sorry that happened to your brother.

My life is completely different now. I don't even remember the person that I was before my transplant and my life can very clearly be cut into two parts. I'm able to do the activities I want to do without restriction. I'm more confident, happy, and it's all because I can breathe! I'm in the gym as much as possible and ran a half marathon in the spring. It's amazing how you can totally change once you are released from the uncomfortable feeling of CF and all that comes with it. Plus all the time I have without daily CPT!

The biggest problem that I have had since my transplant was my diagnosis of PTLD in July of 2009. I ended up being extremely lucky as the PTLD I had presented in my esophagus and caused tremendous pain. You are probably thinking "why is this lucky?!". The pain cued me in that something was wrong and we caught the tumor very early. The PTLD that I had was very treatable and went away quickly. However, since we messed with all of my meds to get that under control, it has thrown the rest of my body completely off. I'm still dealing with an extra frequency of doctor's appointments and trying to get everything on solid ground. I will admit, it has been the most stressful time since my transplant.

I am so happy that I had a transplant. I would have done everything the same if I had to do it over. The best thing is the fact that I can breathe. That I don't have to worry about oxygen and cpt and coughing. I'm a more pleasant person with a much happier disposition. While sometimes it seems we have a lot to juggle, CFers are used to that already. It was worth every single second and every single worry.

 

[summer732]

Welcome to this journey! Although it seems you have experience with this. And I'm so sorry that happened to your brother.

My life is completely different now. I don't even remember the person that I was before my transplant and my life can very clearly be cut into two parts. I'm able to do the activities I want to do without restriction. I'm more confident, happy, and it's all because I can breathe! I'm in the gym as much as possible and ran a half marathon in the spring. It's amazing how you can totally change once you are released from the uncomfortable feeling of CF and all that comes with it. Plus all the time I have without daily CPT!

The biggest problem that I have had since my transplant was my diagnosis of PTLD in July of 2009. I ended up being extremely lucky as the PTLD I had presented in my esophagus and caused tremendous pain. You are probably thinking "why is this lucky?!". The pain cued me in that something was wrong and we caught the tumor very early. The PTLD that I had was very treatable and went away quickly. However, since we messed with all of my meds to get that under control, it has thrown the rest of my body completely off. I'm still dealing with an extra frequency of doctor's appointments and trying to get everything on solid ground. I will admit, it has been the most stressful time since my transplant.

I am so happy that I had a transplant. I would have done everything the same if I had to do it over. The best thing is the fact that I can breathe. That I don't have to worry about oxygen and cpt and coughing. I'm a more pleasant person with a much happier disposition. While sometimes it seems we have a lot to juggle, CFers are used to that already. It was worth every single second and every single worry.

 

[summer732]

Welcome to this journey! Although it seems you have experience with this. And I'm so sorry that happened to your brother.
<br />
<br />My life is completely different now. I don't even remember the person that I was before my transplant and my life can very clearly be cut into two parts. I'm able to do the activities I want to do without restriction. I'm more confident, happy, and it's all because I can breathe! I'm in the gym as much as possible and ran a half marathon in the spring. It's amazing how you can totally change once you are released from the uncomfortable feeling of CF and all that comes with it. Plus all the time I have without daily CPT!
<br />
<br />The biggest problem that I have had since my transplant was my diagnosis of PTLD in July of 2009. I ended up being extremely lucky as the PTLD I had presented in my esophagus and caused tremendous pain. You are probably thinking "why is this lucky?!". The pain cued me in that something was wrong and we caught the tumor very early. The PTLD that I had was very treatable and went away quickly. However, since we messed with all of my meds to get that under control, it has thrown the rest of my body completely off. I'm still dealing with an extra frequency of doctor's appointments and trying to get everything on solid ground. I will admit, it has been the most stressful time since my transplant.
<br />
<br />I am so happy that I had a transplant. I would have done everything the same if I had to do it over. The best thing is the fact that I can breathe. That I don't have to worry about oxygen and cpt and coughing. I'm a more pleasant person with a much happier disposition. While sometimes it seems we have a lot to juggle, CFers are used to that already. It was worth every single second and every single worry.