I feel that I have experienced every single second that has passed since my great news 3 weeks ago. I'm still thrilled, but now I'm READY for the next step.
I was finally able to get in contact with my donor coordinator this week (she was out on vacation) and she's had a chance to speak with the transplant nephrologist regarding my labs, and it doesn't sound like they were very good.
While the nurse coordinator can't tell me many details, she did mention that there could be more drastic measures needed in order to stop my proteinuria so that we can move forward with the Rituxumab. She mentioned something about PD not being ideal, but I've spoken with my dialysis nephrologist and I'm not sure I agree. It doesn't really matter all that much what I think though....I'll do pretty much whatever they tell me.
I, of course, head to Google to start researching nephrectomies and bilateral renal embolization, because I'm worried that one of those might be in my immediate future. It's not easy to find anything that's understandable, but I stumbled across a couple of articles that might help me have an intelligent conversation with the nephrologist when I meet with him next Tuesday at Mayo.
As I understand it, a nephrectomy is probably a 2-month recovery. Then there's 2 months of Rituximab. THEN transplant. That's a LOOOOOOONG time.
I felt awful when I told Adam. He keeps telling me to not worry about him, but that really doesn't help much :) I was talking to Joacim the other night and I actually made the statement, "I wonder what it's like for him to be waiting". And then I realized that I know EXACTLY what that's like, and that he's now in my never ended state of limbo. Sorry, Adam :)
I've gone to yoga 2 times this week (yay) but my weight is still wildly fluctuating. Fuck...I don't know what to do to get to where I was. Maybe I'm crazy for trying, but this weight just doesn't feel right to me. And I don't feel as good as I used to in the morning. I'm groggy, and never feel like I got enough rest, and that's after sometimes 12 hours in bed! I'm freaking out a little!
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there... -
I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
OK so I don't feel that bad because I can also sleep 10-12 hrs. a night. I hope everything goes well for you and your transplant. I will be in Minnesota the 21st through 28 November so if you are at Mayo during this time I love to meet up with you. Keeping you in my prayers you will do great !!!!!!
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