8-23-12/Good News, AKA Fast Turnaround

Yale went as well as can be expected today.


Creatine is stable around 2.0. My white blood count is 5X what it was when I went into the hospital on Friday at 2.4K (vs. 500). NO MORE MASKS! I can also go out in public! Awesome.


My wife and I are renewing our vows 9-2-12 and celebrating a new lease on life. It will be our 5th wedding anniversary. Yale and I both felt it was best to save another round of IVIG for AFTER that special day.


So bloodwork next week anywhere, and then back at Yale after the vow renewal.


The consensus on the glucose spiking is that it is the high doses of prednisone. However, it is not out of the realm of possibility that I develop more permanent diabetes. Basically, as I have said before, transplant is not a fix, it’s a treatment option. It is not without massive risks – i.e. diabetes.


I am not going to worry about it until I have it and assume, like Yale does, that it goes away as we taper off the steroids.


Of course, Yale is perplexed that I seem to get reactions that no one gets and/or get everything. However you want to look at it.


I had intended this blog to help guide people through transplant, but the longer this goes on, the more I realize I am a bad/worse case scenario. Great resource, because I seem to experience everything (and often multiple times – i.e. biopsies, cystoscopies, etc.). However, I am not necessarily painting an ideal picture.


I am currently dealing with the fact that despite everything I have been through, I am still going to be sick forever. Sickening and saddening.


I’ll keep on trucking and keep my chin up though – no worries.

6 Responses to “8-23-12/Good News, AKA Fast Turnaround”
  1. The Little Sister says:

    I thought my personalized mask idea for the vow renewal was a great idea

  2. Lillian Rosenzweig says:


  3. Teepee12 says:

    Some of us are just lucky. Like you, I seem to be one of the people who, if a reaction is considered “1 in a million,” I’ll be the one. Keeps life exciting. Me, I’m ready for some serious dullness.

  4. Teepee12 says:

    It gets better. Even though your physical issues may never entirely disappear, you learn to deal with them. You know what to do when thing flare up. Your problems stop being problems and just become your version of “normal.” It sounds weird, but it’s amazing how much we can accommodate. Long term chronic illness sucks, but a lot of us deal with it and you can have a real life, even if you aren’t altogether healthy.. I can’t magic your illness away … not yours or mine … but I can assure you that after you survive the initial assault on all your systems, you learn to manage your problems and work around them. You can do it. Many of us have. It isn’t fair and it isn’t fun, but it beats the hell out of the alternative.

    • dakski says:

      “It beats the alternative.” I said that to someone today.

      In the meantime, I am optimistic that in the short-intermediate term I get to a more “normal” normal.

      Thanks for all the support.


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