Esophageal motility issues and transplant

[PinkPigg]

Hey all, I need some input/advice etc. My transplant evaluation at Duke was last week. They called yesterday to say I'm not a candidate due to esophageal motility issues due to my reflux. Has anyone had similar issues? Is there any effective treatment? I know I've asked some of this before but I'm asking again because I'm kinda freaking out right now.

Also, are there other centers you know of that might be more willing to work with these issues? Thanks so much. It's a little rough dealing with all of this and any help would be greatly appreciated.

Peace,
Steph

 

[Aboveallislove]

i'm so sorry. i can imagine how scary this is. i'm not sure on your specific question, but i know others have discussed this issue re cepacia and there is one center that does tranplants where most won't. i think it's in philly? maybe do a search for tranplant and cepacia and try calling that team.
-Hug and prayers,
Love

 

[Aboveallislove]

Here's the thread I was thinking of. It has several folks talking about transplant centers and ones that accept patients with cepacia. I would think they would be more open to other challenges too, so I'd start with those.
-Love

 

[Daverog75]

Hello Pink Pig,

Are you on any medication for your reflux. I take losec everday and it controls my reflux quite well. I tried to do the motility test but kept coughing and when I coughed I could feel that stupid thing they shoved down there and it made me gag, and everytime I coughed it messed up the readings.

Dave, 37 w/cf

 

[PinkPigg]

Hi Dave,

Yep I'm on Dexilant which is similar to Prilosec. It has helped but must not be enough. The motility test was a pain but I did get through it. Hope things go well for you on your journey with all of this

Peace,
Steph

 

[rose2wood]

Our son, just had double lung transplant 4 weeks ago at the Cleveland Clinic. He had a surgical procedure, Nissan Fundleplication, to help with reflux prior to transplant. The Cleveland Clinic would be a great place to start.