Bone Marrow Transplant Support Group

I had a BMT on 1/19/11. I'm not familiar with the BK virus, but you didn't say whether they used her own cells or donor cells. If they used her cells, there is little likelihood her body would be rejecting them. Catching a virus is not uncommon during the hundred day recuperation, which she's in now, and I took an antiviral and an antibiotic every day for the hundred days. She's around the 60 day mark now, so she does have substantially more immunity than she had right after the BMT. Unless the doctors are worried, I wouldn't worry that much. BMT patients catch things, but since it's expected, doctors usually know how to handle them. Hope this helps.

Thanks so much for your reply. They retested her for the virus today so, hopefully it is going away. They had to reduce her anti rejection medicine for it to heal itself. She also had to spend a couple of days in the hospital and she caught a VRE bacteria (Which caused her to have a urinary tract infection and now has GVHD in her eyes. They seem to have caught everything early and the infections are slowly going away. She actually had a non related donor's stem cells. My brother and I were not a match. For the most part she is doing really well. How are you doing? Did you have a related or non related stem cell transplant?

I had a stem cell transplant, related donor, on March 30. I tested positive for CMV, which is a virus similar to BK. It just means that there is that virus in your blood stream. They usually just change meds and keep checking your viral load to make sure you are not symptomatic. Most adults have these viruses in their blood, they are just dormant. In those of us who are immunosuppressed, it can cause trouble. Also, understand the whole getting things. Still struggling with GVHD of the stomach and intestines, had it since early May. Tell her to hang in there. It is something that just happens with those of us who have allogenic SCT, from a donor and not our own. Also, let her know that because its from a donor, her recovery is going to be longer. I am on +100 and still its day by day, and the exhaustion is horrible. They say for donor SCT you don't start to get back your energy until day +180. Just tell her to be patient and not worry about the virus, as long as she doesn't have any symptoms, she is fine.

Hi Abby-Thanks so much for your reply. She has been told that she has GVHD in her eyes, which they are treating. She has also started having trouble with throwing up and upset stomach. They told her that she might have GVHD of the intestines. How did yours start? They have her in the hospital running some test. She is having a Colonoscopy and Endoscopy today. I will have more news to report hopefully tomorrow. I will keep you updated and will continue to pray for everyones recovery. Sherry

Sherry- I still have GVHD of the gut or gastrointestinal GVHD. Mine started with severe pain in my stomach and intestines and then diarrhea really bad. I didn't present normally, usually people present with nausea and diarrhea. I had an endoscopy and colonoscopy and the biopsies came back positive for GVHD in my stomach and intestines. They treat it with steroids. Hopefully, it will resolve soon. I have had a really hard time with it and still have severe pain, and its been over 2 months. I will pray that she doesn't have intestinal GVHD or that it is mild, it is not fun. Abby

Hi Abby- The results came back and my sister does have GVHD of the gut/intestines. Right now she is not in any pain; however, she is having indigestion, and diarrhea problems. She was vomiting, but that has stopped and they are now grinding her food up and giving it to her through her port. They are going to start her on solids slow. I think later on today or tomorrow they are going to give her Jello and popsicles and see how see does with that. They started her on prednisone yesterday and have been giving her Nexium for the indigestion. I will keep you posted. I will continue to pray that everyone feels better soon.-Sherry

Sherry- sorry to hear that it is GVHD of the intestines. It is good to have a diagnosis, but it is not a fun one. Hopefully, the steroids will help and she will get better soon. I am still having trouble with my GVHD of the intestines, but I go back to the doctor on Friday and hopefully they will have some new thoughts on treatment. I will continue to pray that your sister feels better soon. Abby

I had a non-related perfect match donor for my SCT. I am on day +29 and was told on Wednesday that I have the BK virus. I did not test positive for it before the transplant. However, apparently it is fairly common for the BK virus to develop in allo patients. My doctor told me that it usually goes away on it's own because it's viral, but when I asked how long, he said 2-4 weeks, ack! He gave me a prescription for a medicine that helps with bladder spasms, so hopefully it won't be so painful soon. As long as her kidneys test fine, and it doesn't get worse, she should be fine.

Sorry if this is now irrelevant, hope she's doing much better!

Thanks so much for the information. She is actually doing pretty good and the BK virus did eventually go away.. Please keep me posted on your recovery.

jenro,

Congrats on being day +29. You are still in the first 100 days, be very careful about germs and everything. I had my SCT on March 30, 2011 so almost a year out. My CMV eventually went away too. It is just because our immune systems are so compromised.

Sherry- Glad to hear your sister is doing so well.

Abby