Health and Transplant Update

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OK, this one's a doozy, so bear with me!

My brother-in-law, Tim (Jamie's brother) had offered to be tested to give me a kidney, and he's been going through “the process” since earlier this year. Around Memorial Day, I got that call I've been waiting for, that Tim was a match and we were set to go ahead with the transplant.
I had a bunch of testing to do myself, so it took until the last week of June to get everything organized, lab work, EKGs, Echocardiograms, Chest X-Rays, the works!
End of June comes, and my transplant coordiator, Diane, calls me and asks what I'd think about August, or maybe July? Two dates were being thrown around; Aug. 6 and July 22. The 22nd seemed so quick to me, but if UCSF thought it would work, I was totally down! I'm ready to get my life back!
Surgery was scheduled for July 22! I “went public” on Facebook and my various online communities, we started planning for my temp coverage at work, Jamie got the forms he needs to take family medical leave… the wheels are spinning faster and faster, time is zipping right along!
We celebrated my birthday on July 4, have a wonderful time with family and friends, and enjoy the rare two consecutive days off for us, entertaining Dave and Ann Marie on Monday. Everything's great! Life is perfect!
I woke up Tuesday (July 6) to get ready for work, and felt, in a word, shitty. I was crampy and sore, and it didn't seem to be letting up. I have bad days every now and then, but this felt different, and it scared me. I did an additional manual exchange, hoping that would clear things up. It didn't, and felt, suddenly, like it made things worse.
I called Jamie at work, telling him I didn't feel right, and that I was worried… I was hot with the chills, and hurt like a mofo! I don't know why I called him first; just to give him a heads up, I guess. I called Kaiser next, and I think the operator could hear the freakout in my voice, and she paged the on-call nephrologist instead of just transferring me to my own doc's voicemail. He called back within minutes, and advised me to head in to the ER, just to be safe. I called Jamie back at work, asked him to come home, and gathered my things for the long boring day at the ER. (Book, pillow and comfy pants)
Driving to the ER took what seemed like an eternity; this was the in-labor commute I never had! Every curb, every pothole, every speed bump was agony; my entire torso was screaming out in pain.
I spent several hours writhing on a gurney in the ER, waiting for lab results and such, when I finally heard those words I'd managed to avoid in my three+ years on peritoneal dialysis: peritonitis. I'd be admitted to the hospital for a day or two, to get some heavy duty antibiotics, and then continue meds at home.
I can honestly say I have NEVER been in the kind of pain I was in last week, some of which is still bugging me. I was consistently ranking it a 9 or 10 on a scale on 1 to 10, and even after the pain meds they pumped me full of, it only subsided to a 5 or 6. I've been in constant, unending pain (not even just discomfort; actual pain) for 8 days now, and I don't know when it will be totally resolved.

So here's the bad news: My transplant has to be postponed. Until 6 weeks after the last dose of antibiotics. I'll finish the meds this coming Tuesday (July 20) so six weeks from then is August 31. They only perform transplants a couple of days a week, and I don't know if they'll be open to scheduling them on the Friday going into a long (Labor Day) weekend, so I'm mentally preparing for mid-September.

This is a sucky setback, but my health, and the long term success of the transplant, is really what matters most here.

Thanks to all, as always, for your thoughts, prayers, chants and well wishes. They mean the world to us, and will continue to do so, as long as you offer them in love.

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  1. I'm sure I don't have the right words (beyond ouch, yuck, and so sorry), so I'll just keep cheering you on and wishing you and your family the best. :>

  2. Oh, Lizz!

    First off, your pain sounds terrible and I'm really, really sorry.

    I'm still wishing for the best for you, and hope that September comes soon.

  3. Lizz, I am sorry to hear about the set back. I hope that the next 6 weeks go by speedy fast for you and that the transplant is an amazing success!

  4. I'm sorry to hear about this latest news. Your pain sounds horrible! I'm hoping for all the best, that you will feel better and September will be here in the blink of an eye!

  5. ohmigoodness! I'm sorry to hear this and I hope the rest of this journey is easier and goes smoothly. (((HUGS)))

  6. Libis – sorry you have to endure such pain – I can't imagine. Sending positive thoughts your way.

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