This is in response to a question asked by Nancy Schipper:
I have had major problems with CMV. I was CMV negative and my donor was CMV positive which is the worst-case scenario. As a precaution they kept me on Valcye for 8 months post transplant. I was taken off Valcyte last April and by May I had a full CMV infection with a viral load greater than 200,000. The virus settled in my intestine and Colon, which caused extensive internal bleeding and a month in the hospital and two months to fully heal.
The doctors at infectious disease put me back on Valcyte and I figured I would be fine. I went to the World transplant games in August and found I was very tired and under preformed in the cycling events. When I returned I went in for a blood test and sure enough I had CMV again. This time it stayed in the blood and while I was weak it did not do any real damage. The bad news was that the virus had mutated and the Valcyte was no longer able to work.
Valcyte is the only known pill (the Iv form is ganciclovir). Because of my resistance to both meds I was forced to take Foscarnet which only comes in IV form. I had a PICC line installed and infused it twice a day along with a liter of saline. The saline was required because the foscarnet is very toxic on the kidneys and needs to be flushed out.
If you become resistant to Valcyte then there are not any oral medications that one can take for maintenance to protect against re infection. So now I must be tested weekly and if the virus pops up go back on Foscarnet. The other down side is that there is a chance that the virus could become resistant to Foscarnet and my doctor tells me that there are no other proven meds.
My doctors hope that once the effects of the compath that I had at time of transplant wears off my immune system will help fight off the virus. The other option at that point might be to go off immunosuppressant’s.