I'd say that this was a rather moment day for me in that this is the first time I've been able to mail in a blood kit to Mayo because of a potential donor. There are so many emotions that go along with this that are nearly impossible to put on "paper", but please understand how profoundly grateful and humble I feel that I've even have this opportunity. Part of me is terrified to mention anything at all for fearing it will fall apart, but the another part of me wants to sing it from the rooftops, and pay homage to the woman who is trying to help me (which I will do in a separate post when it's not nearly 11:00pm :).
If you want to understand a bit more about tissue and cross-matching, I found a link here that does a decent job of describing it.
One little vial of blood is all it takes from me at this point....seems like an easy request. Thankfully I had dialysis labs today, plus an iron infusion and EPO shots, so it was kind of like a two-fer.
I was even able to pick up the traveling case for the cycler for our vacation next month (which I'm terrified about, but I'll post on that later).
I realize that I've been neglecting the details on this blog. Lots of things happen daily that I just don't bother posting, but I realize that that's also not giving everyone the idea of the impact of every little thing on my life. For instance, my nurse case manager from Cigna that was incredibly helpful retired at the end of December, and it's been a battle ever since getting ANYONE to respond. FINALLY, after 11 unreturned calls and 6 voicemails, I was able to get a hold of my nurse case manager, and do you know what? She got on the phone and absolutely didn't acknowledge any of it. After she got done speaking, I simply told her that it wasn't acceptable, and that I wanted a new case manager (there were a few more words that my coworkers had the pleasure of hearing :), but needless to say I have a NEW case manager now and he sounds like he's on top of things, so fingers crossed moving forward.
And do you know what ELSE I discovered? Pre-evaluation travel and lodging expenses for the potential donor ARE NOT COVERED. The medical workups are, but not travel and expenses. Once a donor is named and a surgery date set, THEN that's all covered, but I still think that this is a shitty policy in general. Hey insurance companies, why not do everything in your power to discourage anyone from stepping up? Sounds like a great idea so you can milk as much money as possible from us. I know dialysis is profitable for you, but COME ON!!! Thankfully, my potential donor, is using this trip as a mini-spring break with her family, but if this ever becomes an issue in the future, I'm gonna fundraise like hell to make sure that isn't a stopper to getting someone up here.
Other things that suck right now? Well, there's this minor skin irritation that was caused from itching. THIS is what happens to my skin when I itch. All of the little capillaries are at the top and they break, causing these awful red marks.
Another thing? Needle pokes. And the strange bruises that sometimes appear because of them.
Thank dawg for my heating pad which has become a regular feature of my nighttime routine. I'm either freezing, or in pain, and this helps both.
What about that travel fund that provides travel assistance to donors? Can potential donors tap into that? Your transplant center should be able to tell you more.
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