8-5-12/Hope for me and for others? Incision Pictures

I was at Yale Thursday, Friday, and Saturday, for massive steroid (prednisone) treatments. I will spend the next three weeks tapering off from 60MG a day down to 20mg a day. My previous maintenance dose was 5mg daily. The last three days I got 500mg daily through IV.

 

The steroids caused a fast heart rate and hunger, but nothing serious.

 

Additionally, my body – now 5 months removed from exercise feels very weak and achy. I am going to see if I can start walking on the treadmill to get some movement and strength back.

 

We had spent much time speaking with the team at Yale about treatment options for BK virus. As I have mentioned, the treatment for rejection – reducing my immune system can make BK stronger. Even though they are hopeful the rejection will not cause permanent kidney damage, the BK definitely can.

 

There are a couple of treatment options for BK. First, they can use strong anti-viral medication. This has proven unimpressive. The other, more benign, and potentially more effective treatment is a transfusion/infusion (not sure what the right word is) of healthy hemoglobin that conceivably contains anti-bodies to BK virus. Most people have BK and suppress, which I cannot do right now.

 

Both of these treatments are usually used as last resorts, when they cannot control the virus. Remember, only about 12% of transplant recipients get BK in the kidney – where I have it – and much fewer have rejection simultaneously.

 

What we discussed at Yale is doing the transfusion/infusion sooner rather than later. This has the potential to keep the virus from gaining strength and may help create a new protocol for similar situations in others.

 

I have always hated being a guinea pig, but doing it willingly seems different. Here I can help myself and potentially others. That seems like a potential win/win.

 

I am not supposed to be back at Yale until Thursday, but will try to get more info prior to that visit.

 

Finally, I am adding a new page on the blog with pictures of the incisions/holes, etc. as things are healing pretty well at this point.

Comments
7 Responses to “8-5-12/Hope for me and for others? Incision Pictures”
  1. Teepee12 says:

    They invented an entirely new surgery for me in 2007. That surgery has since saved thousands of lives and people come from all over the world to the Brigham in Boston (soon, Mass General and Emerson … Dr. Lautz is moving to where he gets to run the show his way) but I was the first. I didn’t know it then. I was so sick that I was only slightly aware of anything. Even had I known, I had nothing to lose. I was dying.

    You have doctors that are ready to try a new protocol. That is rare and wonderful because most doctors won’t stray off the protocols that their hospital uses. It is much more rare than TV doctor shows make it appears. It takes a lot of courage and creativity for a doctor to go against established procedure … and most have neither the ball or creativity (or talent!) to try. And it shows your own strength and intelligence that you will let them try.

    You have great doctors — not only the difference between life and death, but between winding up with a GOOD life vs. a crappy one. This is heartening news. Garry and I are following you and many others too, all over the world.

    Keep on keeping on. After this, your world will be different. Close encounters between you and the big guy with the dark wings is not something you ever forget.

    • dakski says:

      Thank you for the insight. I hope it all works out, but I am optimistic at this point.

      I know well about the close encounters. My life perspective is forever changed.

      Take care and be well.

      David

  2. Lillian Rosenzweig says:

    You are a procedure for BK virus , It will be good for you and others who follow.

  3. Teepee12 says:

    Reblogged this on Serendipity and commented:
    When your life is on the line, having a medical team willing to try something new is the difference between life and death … and the difference in the quality of life post crisis.

  4. Christina says:

    Hello, I am going through my first ever rejection period. I had my first day of 100mg of iv prednisone and have some tomorrow and Sunday. Monday I will be put on oral prednisone for a quick taper, 60 mg day 1, 50 mg day 2 etc. unt I get to 30mg (they want to leave me there for 7 days and then drop me to 20, im trying to drop in 1 or two days to 20 mg). My question is about prednisone symptoms at the tapering, did you get moon face from 20mg and then tapering down to 10mg a day? Did you have symptoms from day 1 of the oral prednisone? I reaaaaally hate prednisone and was doing some googling trying to figure out if I should expect moon face to occur in the next two weeks.
    Please let me know đŸ™‚

    • dakski says:

      Christina,

      I do not know how I missed your email.

      I hope everything worked out and you are doing okay!

      I had major symptoms from the IV prednisone – 500mg a day and then the 60mg taper down. I went diabetic and needed insulin. All that is resolved now. I take 10mg a day of prednisone indefinitely because BK virus is less sensitive to that than the cellcept. Acne has become a way of life :(.

      Take care and be well.

      David

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