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CMV Virus

Hey everyone. I'm 27. I just received a kidney and pancreas transplant in December 2017. It's been about 5 months since transplant. I'm now having issues with my cmv level raising for the first time. They are wanting me to do the research with the oral medicine maribavir or iv form medicine foscornet. Has anyone dealt with either medicine or the research or just having cmv and what options did you have. I'm currently taking valcyte 2 pills twice a day. Any feedback will be greatly appreciated

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  • That was about 4 months ago. I did the research and got chosen for foscarnet. I had to get a line put in in my heart area. Which I really did not want to do bc I had previously had 4 lines bc of dialysis. I did the foscarnet through the curlin pumps at home. Once the cmv had dropped down to a low number ( non detectable) they took it out bc the longer they are in the higher the infection risk is. Maybe around two weeks later cmv started raising back and they wanted to put another line in yet again !!!
  • My sister and I were both CMV negative and our new kidneys are CMV positive.  As soon as she stopped the valcyte, she developed CMV which landed her in the hospital for a week and on IV meds for 6 months with a port into her heart.  She did the research study with maribavir and it was useless, so I chose not to do it.  I am 3 months post-transplant, and I will take valcyte for another 3 months.  After that I just pray that I don't develop CMV but I fear it's inevitable...

  • I had my K/p transplant 05/2010. At about 9 months out, I developed CMV-all of my symptoms were GI related. I can't recall the first treatment drug that was tried but was ineffective. I then used Foscarnet IV for 6-8 weeks and CMV was cleared. At that time, Foscarnet was low in supply and had to be sent from England? My transplant center was able to get my supply and had to set up special arrangements for me to take the drug home and administer it. The infusion companies that do home IVs could not access the medication, only the transplant hospital. This was offered as the alternate treatment to me, not as a research issue. The CMV did not return. Good luck with treatment Shakiera.
  • Hi, I had a tx in the same month and just stopped Valcyte after 2 weeks of treatment. My CMV was at 5,600 but now is less than 137. My issue is that the CMV and Valcyte dropped my WBC to 1.9 and my ANC to .4. I have had to stop my Cellcept and start 5 of Prednisone.. I was previously on a steroid avoidance program. I am small and only weigh. 98 lbs, so that may be a factor. I am taking Neupogen injections and hope with time to get back on Cellcept. I believe from reading this is a common time for CMV to activate after tx. I don't have any experience with the research meds..I hope this helps a little.

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