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← Return to transplant Immunosuppressants
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My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant is supposed to stop or slow down the condition, I've herd they're doing some other things at different centers but don't think they have found anything yet. I want to see if they'll run some tests to see exactly what all it has effected, besides the obvious things that you can see, I be willing to have try treatments on me, within reason of course that it might help other people.
Replies to "My nephrologist diagnosed it, apparently he had been hearing about it and knew the symptoms, transplant..."
Yes, they set up everything from pre to post transplant,so it's all coordinated.
@ca426, That is a good thing.
I met a woman several years ago who shared her experience. She was at least 10+ years post transplanted with a kidney. Her transplant facility was a great distance for her to travel And she eventually asked to be released to a local nephrologist. And he wanted to make some medication changes - after her long term successful treatment at her transplant facility. Fortunately, she had the 'courage' to stand up to him and consult with her transplant team. They did not approve of his idea. She was doing well when I saw her in December 🙂
Rosemary
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@ca426, I read that it is a rare condition. So it is good that it is discovered in you. I can understand why you want to know if it is affecting any other parts of your body.
Is your nephrologist associated with your transplant department?
Rosemary