August 23, 2019 at 4:40 pm #48734
I’VE HAD BONE MARROW TRANSPLANT MARCH 2018 I AM NOW 100% DONOR CELLS MY PROBLEM IS AS OF 3 MONTHS AGO GVHD IS IN MY GI TRAC AND HAS SPREAD TO MY EYES EARS AND MOUTH. HAS ANYONE GONE THROUGH THIS IT SEEMS LIKE I HAVE MORE MONTHS IN HEAD OF ME. IM SEEING ALL SPECIALIST NOW OUTSIDE MY CARETEAM. I HAVE HANDLED EVERYTHING BEFORE TRANSPLANT AND EVEN TRANSPLANT WITH REALLY NOT ANY PROBLEMS BUT THIS IS SHAKING ME
TO MY CORE. PLEASE SOMEONE SHINE SOME LIGHTAugust 25, 2019 at 5:52 pm #48743
Welcome to the club. I have had GVHD for 5 years. My team say they have nothing else to try. My problems include eyes, throt, mouth, fatigue, anemia, swallowing, dizziness, ect. I am willing to listen and offer my opinion.
RayAugust 26, 2019 at 2:49 pm #48744
Like you I am suffering with the same issues but not happy with you dealing with GVHD for 5 years tho i have read it can last up to 8 years. The regimen (4 times a day) that I have to deal with mouthwashes. gel, eye drops consumes most of my day and night I always said to myself if my quality of life changes I would not want to stay around and I don’t mind telling you that if this sticks around for 5 years I WILL NOT I know you don’t know me and it doesn’t sound like I’m positive but let me assure that up to this point (11 years) I have been. I guess I shouldn’t have thought I was Superman only to find out I’m just Clark Kent. I thought I would be back to normal by now. BOY WAS I WRONG!! I appreciate you responding to me and letting me know what you go through. You know what they say MISERY LOVES COMPANY!! Just to let you know I am 63 years young.
Grifty50August 26, 2019 at 7:46 pm #48745
Sorry you gents are dealing with this, GVHD is a tough but to crack and occurs post transplant more than you know. My friends son had a transplant at 26 and engrafted but the GVHD took it’s toll on his lungs and after 6 years of living on oxygen, had a double lung transplant 4 years ago, now back in and out with only 50% lung capacity. Quality so important. Fixed one thing and screwed up something else. Sure hope things improve for you both.August 27, 2019 at 8:42 am #48746
Thanks Kathy for letting me know what else can happen tho it’s scary to learn all that can happen. I would rather know what I’m up against to help with possible cure. Just like in the beginning you have to be your own advocate and stay on top of things Thanks againAugust 27, 2019 at 9:50 pm #48749
Hi Grifty50, When I had my transplant I was told if I made it to day 90 I would continue to improve. Day 91 was the start of a 2 month hospital stay. I was told that many people feel better after a year which was when my chronic GVHD started. Then the magic date was pushed out to 3 years, then 5, now you say it is 8 years. Only 3 more to go.
Hold out hope, I have a few good days when I am almost normal. You will also. I listen patiently.
RayAugust 27, 2019 at 11:14 pm #48750
Bone marrow cells are the cells contained within the bone marrow. These include stromal cells, which are not directly involved in haematopoiesis, and haematopoietic stem cells, which are responsible for the production of blood cells such as leukocytes, erythrocytes and platelets. When the normal blood cell development is interrupted by uncontrolled growth of an abnormal type of blood cell, the blood caners begin.September 4, 2019 at 12:22 am #48790
Rose eden GuanzonParticipant
Hi. My husband is now on day 150. He is experiencing same symptoms: extra sensitive gut, eyes are always dry, red sometimes and his vision has worsened as opposed to having great, no issues eyesight prior to transplant. He now finds it hard to read and has migraines. His ankle is always swollen too. Little appetite and no energy. But of course we see other patients with worse gvhd issues and we feel we cannot complain. Anyone out there who came out scatfree from a transplant?
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