Kalydeco after Transplant

[fhayden]

I'm wondering if anyone is taking Kalydeco post transplant. I received my transplant in 1998. I do have the rare CF gene that qualifies me to take Kalydeco. I actually already received my bottle of Kalydeco yesterday. My coordinator says I'll have to monitor my cyclosporine levels weekly. I'm wondering if I'm the on post transplant able to take Kalydeco.
Thanks,
Frank

 

[fhayden]

I'm wondering if anyone is taking Kalydeco post transplant. I received my transplant in 1998. I do have the rare CF gene that qualifies me to take Kalydeco. I actually already received my bottle of Kalydeco yesterday. My coordinator says I'll have to monitor my cyclosporine levels weekly. I'm wondering if I'm the on post transplant able to take Kalydeco.
Thanks,
Frank

 

[fhayden]

If I decide to take it. I think I'll be the only CF lung transplant taking it. I called Vertex but they were not able to give me any answers. I'm wondering if it's worth the hassle. Frank

 

[fhayden]

If I decide to take it. I think I'll be the only CF lung transplant taking it. I called Vertex but they were not able to give me any answers. I'm wondering if it's worth the hassle. Frank

 

[Anomie]

If you have pancreatic issues it might prevent you from developing CFRD. Just a thought and not to be construed as medical advice.

 

[Anomie]

If you have pancreatic issues it might prevent you from developing CFRD. Just a thought and not to be construed as medical advice.

 

[fhayden]

Hi. Thanks for the reply. Unfortunately, I developed CFRD in 2005. Not bad considering I'm 42 yrs old and didn't have to deal with it most of my life. I will say for me CFRD is one reason I even considered taking it. I was thinking if it helps with digestion maybe it could help with CFRD too. No one really knows it seems. The other thing I thought was that Kalydeco might help is my sinus infections.

Since my transplant sinus infections have been more frequent for me. I'm on IV meds now for a sinus infection (MRSA and Archomobacter) that infected my lungs as well. Anyway, I sorta feel alone because there are some unknowns that I can't get answers for right now. I figured coming back to the CF community I might find someone else who had a transplant and is taking Kalydeco. It's certainly an expensive med: $24,500 per month. Thanks, Frank

 

[fhayden]

Hi. Thanks for the reply. Unfortunately, I developed CFRD in 2005. Not bad considering I'm 42 yrs old and didn't have to deal with it most of my life. I will say for me CFRD is one reason I even considered taking it. I was thinking if it helps with digestion maybe it could help with CFRD too. No one really knows it seems. The other thing I thought was that Kalydeco might help is my sinus infections.

Since my transplant sinus infections have been more frequent for me. I'm on IV meds now for a sinus infection (MRSA and Archomobacter) that infected my lungs as well. Anyway, I sorta feel alone because there are some unknowns that I can't get answers for right now. I figured coming back to the CF community I might find someone else who had a transplant and is taking Kalydeco. It's certainly an expensive med: $24,500 per month. Thanks, Frank

 

[fhayden]

I know why I'm not getting many response and that's because not many transplant centers are giving Kalydeco to their patients. I just got off the phone with several transplant centers. None are giving Kalydeco to their CF patients. Some didn't even know what Kalydeco was. I think this med is so new that it may take some time before any information on CF Transplants taking Kalydeco.

Frank

 

[fhayden]

I know why I'm not getting many response and that's because not many transplant centers are giving Kalydeco to their patients. I just got off the phone with several transplant centers. None are giving Kalydeco to their CF patients. Some didn't even know what Kalydeco was. I think this med is so new that it may take some time before any information on CF Transplants taking Kalydeco.

Frank

 

[beautifulsoul]

I don't understand how you are able to take Kalydeco. My transplant center has told me that any type of a CF cure/treatment would NOT benefit me because the lungs don't have CF anymore which is obviously the most important effected organ with this disease. Maybe there could be other possible benefits with taking Kalydeco post transplant? I doubt it though. Like you mentioned, it's too new to be experimenting with post TX patients. In my personal opinion, I don't see how this drug would help those who are post TX. I have the most common mutation DDF508. I'm hoping in the long run maybe something will be available to post TX patients as well.

 

[beautifulsoul]

I don't understand how you are able to take Kalydeco. My transplant center has told me that any type of a CF cure/treatment would NOT benefit me because the lungs don't have CF anymore which is obviously the most important effected organ with this disease. Maybe there could be other possible benefits with taking Kalydeco post transplant? I doubt it though. Like you mentioned, it's too new to be experimenting with post TX patients. In my personal opinion, I don't see how this drug would help those who are post TX. I have the most common mutation DDF508. I'm hoping in the long run maybe something will be available to post TX patients as well.