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Old Fri Dec 14, 2018, 04:30 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
Post transplant 1 1/2 years. Doing well after a bout of GUT GVHD.

Thank you Ruth, Rarity, Lisa and Cheryl for your encouragement.

Yesterday, the hospital called me in for an 18month check up. Every 6 months there is a check for every post transplantee. After the one year post transplant, my immuno suppressant was halved, and I thought I could breeze through another six months.

It didn't work that way. Without the cyclosporine, my GVHD stomach and intestines went overboard: vomiting and diarrhea. I took a gastroendoscopy, found that the esopagus was inflamed. I was given some drugs: FLAGYL (antibiotics) and Repamipide (gastritis), and another drug for my stomach.

After about 8 weeks (a terrible 8 weeks), my stomach came back to normal, no diarrhea, but with some "burping" and "gassing" still around. I trusted my doctor, and I guess he was right, he did not increase my cyclosporine, but waited for my body to get used to the drugs. But try 8 weeks with a bad stomach! Food has less temptation now for me. Yes, Cheryl, food is so important. I think I was careless about what I ate.

Since I am still on immuno-suppressants, I still haven't taken all the vaccines yet.

GVHD: My eyes are getting better. Skin - the Itch, much better too. Liver, OK; IG tract - maybe a few more months for the GVHD to burn out.

My blood counts are great:
RBC:4.36 Hgb: 14
WBC: 6.8
Platelets: 188

Merry Christmas everyone ! Please stay warm and healthy.
I'll stay here for Christmas. Anyone coming over? I'll bring you around. I know lots of Ultra Clean Places to eat .

Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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