8-09-12/Good News on Rejection & BK Virus Treatment Options

I needed a good visit at Yale today. Things have seemed bleak and I have been very down. So much so I haven’t even bothered posting. I also have been having side effects from the steroids (high blood pressure, trouble sleeping, agitation, etc.). In fact, I haven’t slept in over 30 hours at this point and would best describe my  mood as combination of depression and apathy.

 

When I went into today, I described my mental state and basically stated that I needed something positive. Even something small – like I can start mild exercise – something to take control. I can do that. But I have better news.

 

The nephrologist described that it can take a while for things to improve even from mild (1A) rejection. We were all shocked when the creatinine came back at 1.8! It had been 2.2 – 2.3 for a while now. He described it as “we are winning,” but was clear that we are not out of the woods. I’ll take a set and worry about winning the match down the road!

 

He reiterated that BK Virus is in the kidney, but not currently doing damage (or noticeable damage anyway). Putting the creatinine and the BK Virus together means that even if it starts doing damage, we are likely starting with a healthy kidney. So there is a margin of safety.

 

We discussed treatment options for BK. There is an anti-viral that works well with BK Virus but, of course, is nephrotoxic. So that leaves IVIG (IV Gamma-globulin) treatments. He, like the other nephrologist, is not blown away by the efficacy they have seen with the treatment, but it is usually used as a last resort.

 

He is going to check with my insurance and try to pre-approve treatments. They are expensive, there are many, and they are long – about 6 hours per treatment. He made it seem a little like we were grasping for straws and that there might be time to let things run their course a little. However, was very open to the treatment if I was.

 

I am hopeful, even if it’s not definitively what keeps BK from hurting the kidney, that it a) helps and b) helps set a standard for helping others.

 

I just need to figure out how to kill time during treatments and balance my ADHD!

 

In the meantime, I am back on Valcyte and blood pressure medicine.

Comments
7 Responses to “8-09-12/Good News on Rejection & BK Virus Treatment Options”
  1. Lillian Rosenzweig says:

    Keep thinking Positive……………………

  2. jenn trombley says:

    David!!
    I’m so sorry that I have been absent from your blog…I wish I had known you have been ill. everyday I come to work and say “I hope David comes in today!” selfishly I came here to get ahold of you to tell you we are discontinuing Shanghai orchid…and then see your news. please forgive me…I would love to talk to you or if you can get out for a few, call the store anyone here knows they can give you my schedule…please tell Maria and your mom hello. get better. miss seeing you!

  3. Elena says:

    Hope you are doing better. I talked with my Uncle Bert (your grandfather) a few days ago, and he encouraged me to call you. I left you a message. Call when you have a chance, and let me know how you are.

  4. Gary Kiffel says:

    Good news is good news, and I’m happy to hear yours. I love your attitude. It’s the currency that has paid your account so far. Here’s to lots and lots of good news. And lots more rides in the Turbo.

    Your pal,
    Gary

  5. Chris Olsen says:

    David
    Thanks for Post. Having same issues, BK virus just hit 91k, Can’t sleep and a super tired all the time. Doctor sees to be dragging his feet. He says let make these small changes to prograf. The problem is he drops prograf dose and the virus goes higher. Seems like Im swimming against the tide. Maybe Yale could help me. Really it couldn’t hurt.

    Christian

    • dakski says:

      Chris,

      I am not a doctor, but was told BK can take time to respond to changes in meds. In other words, the virus can get stronger before weaker and does not neccesarily respond quickly to med changes.

      I have been impressed with Yale despite my setbacks.

      Good luck to you and keep the faith.

      David

      • sandy wife says:

        michael williams ive had a bkvirus since i got my kidney now im back in the hospital they dont tell you that untill you get blood drawn now they tell me what the virus was they had to no what it was just hope they can fix this cross your fingers and pray thank you for listening

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