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Old Fri Apr 29, 2011, 02:58 PM
dhruba_bd dhruba_bd is offline
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Location: Dhaka, Bangladesh
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Today Day 45 but still passing blood and blood clots with urine

Hi all,

Hope all of you are well. I am Dhruba from Dhaka, Bangladesh. My wife has been diagnosed with Severe Aplastic Anemia and had an allogenic stem cell transplant on 16th March,2011 in Cristian Medical College Hospital(CMCH), Vellore, Tamil Nadu, India. Her counts and Platelet is good now(TC=6000 and Platelet=90K). But the problem is that she is passing blood and blood clots with urine since 15th March(1 day prior to Transplant). And as a result her Haemoglobin reduces daily. Doctor said that her urine bladder became thin because of the side effect of Cycloporine injection that used to destroyed her Immune system. He also added that there is no specific treatment for the problem so he suggested to wait. But today is Day 45 and this condition continuing for last 46 days. Last 18 days she received 16 bags of pack cell. Actually I am now litte bit worried. If someone share the experience and suggestion about this problem it will definately help me a lot.

Thank you very much.


Dhruba
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Old Fri Apr 29, 2011, 03:47 PM
Marlene Marlene is offline
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John's bladder bled for six months from the cytoxan. It was very severe bleeding also. Lots of red cells were needed daily. Have they checked to make sure there is no infection present? John's urine culture came back as positive for the BK virus for which there is no effective medicine for it. They wanted to do a procedure that would basically cauterize the bladder but John said absolutely not because of long term problems as a result of the procedure. They basically thought that once his white cells were higher, the bladder would heal properly.

They usually hydrate you with IV fluids to flush the bladder which helps it heal. Didn't work for John though. So they did constant bladder irrigation (CBI). If you can avoid that, do. John's blood clots were preventing him from urinating so they had to intervene. He did that for three months and then we were able to stop that procedure but he continued to pass blood and clots for an additional three months. He would have to lay on his side to urinate if clot got in the way and blocked the flow. He would have stood on head if needed .

What was helpful was eating cranberries. We stumbled upon this accidentally. Cranberries were in season and I was baking and cooking with them, made a cranberry chutney for Thanksgiving, etc. He was eating them almost daily for about 3 weeks. If you don't have access to cranberries, there's a supplement called D-Mannose. It is basically a sugar, which does not effect blood sugar, which is the same component in the cranberries responsible for positive effect on the bladder. It's easy to take and should not have any impact on any med or treatment.

Most use cranberries & blueberries, or d-mannose for urinary tract infections.

I understand your alarm. It's pretty shocking to see that much blood in the urine.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Sat Apr 30, 2011, 11:19 PM
MGirl MGirl is offline
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Sounds like they need to test for adenovirus, and especially BK virus. Both cause potentially significant blood loss through inflammation of the bladder in the post transplant period. Testing needs to be done through PCR FISH analysis or other similar advanced testing methods. If found to be positive, I would suggest treatment with cidofovir with special attention to blood pressure and kidney function.
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