CF center care post-transplant

[anonymous]

Hi everyone,
I'd like to know your opinions about CF-center appointments after having a transplant. Do other post-tranplant people continue to go to their CF docs? If so, what do you see them for?

I had a transplant 7 years ago, and haven't really been followed by CF doctors anymore. My last appointment at a CF center they just looked at my nutrition levels from bloodwork and told me to separate my two ADEKs into morning and night. I have so many appointments with the transplant, diabetes, and sinus docs, and I don't like wasting time, so I haven't gone to a CF center appointment in over a year and a half. They said I should come back in a year, but I'm inclined not to. I want to know if I'm missing something. Any thoughts would be great.

Thanks
Claire
30 w/cf and cfrd

 

[Joanne]

Claire,

I guess a lot depends on how the transplant and CF docs determine they want to work it.

My CF center - where I live in Rochester is where I go for any lung issues, or CF issues. If there is a problem, they contact my lung tx center. However, I am 700 miles from my center, so for obvious reasons I see the CF team. My CF team and lung tx team work GREAT together. They do not feel any power pulls. But my CF center knows that ultimately, the lung tx team is the one that makes the final call on any changes in my drugs or therapies. As my CF team says, they know CF they are not experts on lung tx, so they leave that to the pros.

If you feel your tx team can cover any CF issues, then I would stick with them.

Isn't it great to keep adding to the number of years with your transplant? I will be 9 years in September!!! Hard to believe and the best 9 years of my life health wise.

Joanne Schum

 

[anonymous]

I havn't had my transplant yet ( 2months waiting) but I was told by my cf team that after I get it I won't be coming back. Unless I really need to see them (persumably if I had cf specific problems like with the bowel or something) I don't go back. The transplant team will look after my care with regard to the lungs afterwards...

Shamrock, x

 

[anonymous]

My tx doctor also treats CF patients. Thankfully they are only one hour away. I saw them today and all is GREAT. Thank God.

They take care of everything. IT is a teaching hospital

 

[thelizardqueen]

My question is why wouldn't you still go to see your CF doc? Just because you've had a transplant doesn't mean you don't have CF. What about digestive issues? Weight and nutrition concerns?

 

[anonymous]

My doctor treats cf patients so all bases are covered. My cf digestive is fine and my sinus issues are taking care of if need be.

After transplant all they look at is PFT's and if there is a problem with digestive they address that. Everyone has individual needs.

All my friends with CF see the tx doctors after transplant.

Risa

 

[anonymous]

(I'm the original poster.)
Thanks everyone for your opinions. It was interesting to learn everyone's post-transplant mix of doctors. It sounds like the majority of people after tx are cared for by a tx team, not a CF team, but that's not a rule. You all confirmed my hunch that for me, my tx team is enough and there's no reason to go out of my way to see docs at the CF center.

Lizardqueen, my CF docs are pulmonologists with expertise in CF lungs. Yes, they know about CF digestion problems, but whenever I've had real GI trouble, I got referred to a gastroenterolgist. So I don't see a need to see the CF docs for digestion, when they would just refer me out anyway.

thanks everybody
Claire