And it hit me harder than I thought. I think I'm still a little stunned and a lot scared. Honestly, no matter the number of years I've been preparing or the research I've done can prepare you for someone telling you that you're in kidney failure. It's odd how much hearing those words has rattled me. I kinda feel like I'm in a bit of a fog right now.
So far, I've spoken to my transplant coordinator at the U of M and set those wheels in motion to get me active on the list. She's also spoken to the transplant nephrologists and I have an appointment with him in a couple of weeks. My insurance company has gotten back in the fold again and re-opened my case. Joacim is scheduled for his workup the 2nd week of August for a paired exchange.
I have soooo many questions.......
- When do I get a social worker?
- Is there anything that they'll do to help me feel better or am I just resigned to getting worse and worse and worse?
- How does this whole paired exchange work?
- I feel a noticeable decrease in my energy/stamina....is this real or imagined because I know my numbers? It feels pretty damn real.......
- Will my toes fall off because they're SO FREAKING COLD ALL THE TIME (okay, that's not a REAL question, but still.....fuh-reeezing)
- Will I have to go on dialysis or will I be lucky enough to bypass it?
- Are they going to do a nephrectomy?
- How much time off of work will I need?
- How do I go about getting time off of work?
- How do I continue to wake up every day and putting in the effort when all I want to do is lie down and take a nap all the time?
- Will I still be able to take vacations? I mean, once you're on the list it can really happen at any time (technically). When will the surgeon/nephrologists say it's time?
Not all of these questions have answers, these aren't all of my questions and some answers will reveal themselves as this process moves along. One thing I've already noticed is that I'm going to get VERY tired of hearing, "Oh, don't worry about that. You've got PLENTY of time." Okay, first of all...fuck "you/whoever" for saying that. No one knows how long I have...no one. And to try to "poo-poo" away my fears is condescending and irresponsible, and it honestly just pisses me off beyond words.
Thank dog for social media. Honestly, I may bitch, complain, and generally be irritated by it a lot of the time, but the amount of knowledge I gain from my kidney groups is unparalleled. There is no question too personal, too annoying, too "out there" and I get enough of a variety of answers to take back to doctors to talk to them about. And my FSGS/pregnancy group on Facebook is such an amazing group of supportive women....I'm just amazed at their generosity and the effort they put into helping others in the group, even though they're also dealing with their own issues. I heart them all.
The one thing I DO wish is that I had ASN (American Society of Nephrologists) membership. This would allow me to do much deeper research, but that's a pricy membership that I'm not quite willing to shuck out. I can read a lot of abstracts, but usually not full articles.
Ugh.....sooooo many thoughts. So many questions. So many emotions.
