11-6-12/BK Virus Getting Better, but In Rejection Again

First, the good news. The BK Virus has dropped about 30% in my blood and is not in my kidney.


Also good news: We survived Sandy. No power or heat or running water for 5+ days, but we did better than many. A generator is en-route as I never want to do this again with my health compromised. I need fresh water, the ability to flush toilets, and because of the storm and that we live in the woods of Connecticut, we also ended up with a mouse infestation. We are in the process of eradicating the (potentially) disease carrying vermin, but have a lot of clean up to get to. No power for days and trees falling, wind, and rain, meant the mice came inside. BAD NEWS! Another thing I have to avoid with my compromised immune system.


The bad news: My creatinine jumped to 2.3 and a third biopsy revealed low grade rejection again. The rejection needs to be dealt with, but is pretty free of symptoms. The problem for me is the treatments; massive doses of steroids.


The steroids make me irritable, give me (high) sugar issues, weight gain, and insomnia.


We are going to try to taper off the steroids quickly this time – 7-10 days versus 4-6 weeks to mitigate the side effects.


We also discussed keeping me on 10mg of Prednisone daily vs. 5mg indefinitely. Most transplant patients are older and their immune system doesn’t fight back so hard. Mine does as I am “only” 32.


Also, as the BK (hopefully) disappears, we plan to go up on the CellCept again as well.


I have still been very tired and to say I am sick of the ups and downs and being unable to return to normalcy would be as obvious as saying Mitt Romney had a bad day.


Had 500mg of steroids today and will have 500mg tomorrow, and 500mg on Thursday. Then onto the taper.


Will write more soon.

4 Responses to “11-6-12/BK Virus Getting Better, but In Rejection Again”
  1. Sam M says:

    Obviously I am sorry to hear that you have had a couple of set backs and also that Sandy had such a bit impact. The news over here has focused on NJ and NY but it clearly was a monster storm. I hope you now have a positive run up to Thanksgiving.

    • dakski says:

      Thanks Sam.

      Connecticut got off light comparatively. There was damage to many homes, but not on the scale of NY and NJ, for the most part. The power outage was the worst of it, especially with the cold.

      Take care and be well.


  2. lillianhr says:

    keep on living positively………….

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