"No, It's not Graft Vs Host"

By deedge

1 min read

Five years ago I was fortunate to receive a stem cell transplant from an unrelated donor. I had Myelofibrosis, an incurable form of blood cancer that often morphs into AML. After the first year of the transplant, I was riding the roller coaster of body deterioration, weakness, and disorientation. I'm pleased to say I have an amazing life now. I would venture to say that after 4 years I am cured; my yearly chimerism tests show I am 100% donor cells and 0% cancer cells.

GVHD?

But there remains a problem that I'm finding in the medical field that happens so frequently it makes me wonder if there are more patients experiencing this? Whenever I have a long-term health issue my transplant doctor believes that issue is GVHD. Without a doubt he is right. I know it, he knows it and the team knows it. But when I go to a specialist or my new PCP they deny that the health issue is GVHD and I am treated at times as if this idea is ridiculous. I already know what they're going to say. They may even laugh at the idea.

I attribute their reluctance to call it GVHD to their unfamiliarity with the transplant process. These health issues have nothing to do with my genes or my past. I've never had these issues before the stem cell transplant and intensechemo treatment. When I leave the comfort of the cancer center and the wonderful transplant team I've had, I feel like some doctors just aren't up to date learning about stem cell treatment. Visits to the transplant team are gradually reduced as a person recovers.

A success story

I am a success story and I'm certainly grateful. Would I receive different treatment options if the doctors agreed my digestive issues are really GVHD? I'm not sure, but I believe there are significant differences in treatment between healthy people that are just aging and people with diagnosed GVHD.

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Dennis Golden Moderator
The more involved I become involved in the medical community (not by choice) as a patient the more concern I have over how well informed and uninformed many of our MD's appear to be . I am not alone when it comes to receiving a misdiagnosis or receiving contradictory guidance Perhaps it is an overload of information that prevents MD's from keeping up. Perhaps it is the result of telemedicine or is it that our MD's are so highly scheduled by insurance companies and/or their medical groups that they can no longer givie patients the time needed for a diagnosis. Try to make an appointment today and you soon learn that a physicians assistant (PA) not the MD can see you in 3 months. It is just a crazy time and you as the patient can no longer sit back and remain quiet - we need to be pro-active, speak up and ask questions when we receive conflicting medical information.
deedge Member
You are so right. I need to be more pro-active when a diagnosis of GVHD is disputed!
Katelynn Bauer Moderator & Contributor
Hi <inline-mention username="deedge" user-id="4249203"/> that is so frustrating I'm sorry to hear that you're being dismissed. Are you able to look around for doctors or do you have to stick with a select few? Warm wishes, Katelynn (Team Member)
Amanda Brunson Moderator & Contributor
I understand your frustration because I’ve run into the same issues with doctors. I really wish MD’s a least had a little understanding outside the cancer centers about GVHD. I’d feel more comfortable seeing the outside doctors. I’m sure as well the doctor are consumed with a lot of medical information. I just don’t like being dismissed about my concerns 😔definitely makes me just say quiet 🤐 💔 I’m sorry your going through it too. Amanda🐼(Blood-cancer.com team member 💜)
1. Amanda Brunson Moderator & Contributor
 <inline-mention username="DennisGolden" user-id="3641422"/> I find it hard, but I’ll do better!
2. Dennis Golden Moderator
 <inline-mention username="Amanda Brunson" user-id="4145474"/> The squeaky wheel gets attention saying was always just a funny saying - until one day it hit home for me - What helped me in difficult situations was to simply say " Excuse me I dont believe I correctly heard what you just said" It is amazing how the tone changes on the second go around 😀
Ronni Gordon Contributor
<inline-mention username="deedge" user-id="4249203"/> I’m sorry you have this problem. My cancer center sends reports to my GP so they are all on the same page. Is it possible to make sure this is happening in your case? Also just wondering did you get tests to confirm the GVHD? I had GVHD of the gut confirmed with a colonoscopy so there was no doubt about it. If it is confirmed, they can’t question it and you can get the proper treatment!