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Chronic GVHD ~ Let’s talk about it!

Transplants | Last Active: Nov 15, 2022 | Replies (68)

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@loribmt

There is always a chance of survival! There is always hope! You’ve been through the worst already with the treatment for leukemia and the transplant. Having GvHD should not mean there’s no hope. Most of the time it is treatable with the right medications. To have made it this far shows that you are strong and determined! I’m so sorry you’re not getting the good follow through for your transplant.

Was the prednisone helping your symptoms while you were taking it? Why did the doctor stop this prescription? It’s a powerful medicine to help combat GvHD but it is not tolerated by the body long term. Therefore I can understand if it was time to stop the prednisone.
But there are so many other medications that prevent the inflammation which causes GvHD. it is important for you to find the right doctor to continue your treatment.

I just read your reply to @alive regarding that you now live in France. Do you have access to healthcare there? Is that where you received your transplant?
Is it possible for you to sit down with your current doctor to discuss your health concerns? It is horrible if they have now decided to no longer treat you, because there are more medication options!

@alive and I are both in the USA and have gone to Mayo Clinic for our stem cell transplants. There is a Mayo affiliated hospital in London but I’m not sure if that helps you.

If your transplant doctor won’t help you, can you contact a hematologist near you? With your leukemia history you should be having follow up blood work appointments anyway. If you could have that doctor recommend a hospital or clinic who does transplants. You could get a referral for a second opinion with another transplant doctor to help you get on the road to recovery.

How is your health otherwise? Are you active and energetic?

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Replies to "There is always a chance of survival! There is always hope! You’ve been through the worst..."

I did the transplant in Turkey. February 6, 2018. I lived in Georgia (Tbilisi) ... Turkey needed a lot of money for further treatment. We sold everything we had. So my mother and I left Turkey and headed to France in the hope that there would be more opportunities here and the treatment would be free too. But ... we do not have access to health care yet. The documents are under review. I think that is why they do not hold hands and die because of lack of money. I have been restricted in movement for 3 months and I am suffering from depression.