Tissue and Cross-Matching

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.

Radio silence....

It's been 2 months since my last post.....one would like to think that means that I'm doing well, but it's more like I don't have anything horrifically tragic to report, which I guess is good, but sad that my scale of life is "okay to horrifically tragic".

I think my job will be the death of me.  I'm a busy that I can't understand, describe, or get a handle of.  I don't have time to notice the nuances of my health that I once did, and for a person with a chronic illness, nuances are important.  They can help me identify triggers that make me feel bad, or help me notice things that make me feel good.  Now there's just.....no feeling.

A few weeks ago, I noticed that I was having a noticeable difficulty catching my breath.  It felt like I was walking up multiple flights of stairs, when in fact I was only walking from my car to my desk (a trivial distance, really).  I called my PCP to set up an appointment, as I was due for a thyroid check anyway, and ended up describing my symptoms to a nurse, who then told me to go to urgent care.  So I went to urgent care, and that's always a process.  People like me walk into places like that, and you can see the look on their faces when they see my labs.  It's like they're shocked that I'm still breathing.  Whenever checking in at any new place now, my line is, "I'm the healthiest sick person you'll ever meet".  They laugh, thinking I'm a nut job, and then they'll do labs.

Long story short, I ended up getting referred to the emergency room from urgent care, where I spent 6 hours essentially being ignored.  And get this....it's all because the urgent care's stat lab for potassium measured me at 2.9 and yet a couple of hours later, it measured 3.4 without any intervention.  So what that means is that the lab's measuring equipment is off.  And I got to spend 6 hours in an emergency room (out of network, by the way), only to drink a hideous orange liquid containing a boost of potassium and be on my merry way.

And yet, miracle of all miracles, I still have the exact same symptoms (sarcasm, my friends).  I can do a yoga class one morning, and yet the next day become winded walking.  It's unpredictable, insidious, and just plain awful.  And I guess I'm just supposed to "be okay" with it.   To feel "lucky that it isn't worse".

Screw that.  (I have harsher words, but that'll suffice for now).

Here's a great little ditty that I discovered last week.  I go to a medical building that contains my lab, my primary care doctor and my urgent care.  My PCP and the urgent care is an in-network provider, but the lab isn't.

They're in the same building.

They're all under Park Nicollet.

But CIGNA is a bloodsucking insurance company, so there's that.

My husband started the donation testing process and even that isn't going as I had thought.  Does anyone at the U of M give a shit?  I'm thinking no.  He's sent in blood work, I've done bloodworm, he did a saliva follow-up because time had expired.  And yet, here we are....3 weeks later, and no contact.  What the hell?  I mean......LIVING ORGAN DONOR WANTING TO DONATE ORGAN HERE!!!  WHAT THE HELL DO I HAVE TO DO?????

This would be my surrender flag.