Just.....why?

Why does everything feel like it's so very hard?

I'll get to the point since it's late and I'm tired.  I realized today that it had been almost a month since my appointment at the transplant center, and I hadn't heard anything.  A whole freakin' month.  I honestly believed that I wouldn't have to work as hard once I got to this point, but in all reality, this is where I REALLY have to dig in.  Seems so ridiculously backwards to me.

So here's where things stand.  Joacim did his glucose test last week and the results were great.  He got an email from his coordinator this week saying they discussed his case and decided that he needs to lose weight.  That was it.  Fuck...are you KIDDING ME????  Ugh.  It can't just be us that things this isn't enough info to do much with.  How much weight?  What's the follow-up?  What a1c does he need to be at?  I called his coordinator today and luckily I got a chance to ask her a lot of questions, which was helpful (it also would've been helpful a month ago, but I digress).

Joacim is doing great.  He's cut out candy and bread and started exercising.  The coordinator seemed weirdly surprised when I told her that.  I guess cooperation isn't something she's used to?  Anyway, the plan is for Joacim to do another a1c draw in 2 months.  We're shooting for 5.7 and below, and he's currently at 6.2.  I'm not sure if it's a realistic goal, but it's at least a goal, so we're going with it.  If he's at the "magic number" in 2 months, she'll enter in all of our information, and within a week we'll have some "answers".

I called my coordinator today as well.  I guess this is something I'm just going to have to do weekly, because as soon as I call her, something happens.  I found out today that she has, for whatever reason, not taken the time to actually make me active on the transplant list.  Um....excuse me but WTF????  No explanation, and frankly, I didn't even ask.  She seems so very distracted whenever I'm on the phone with her.  I'm guessing she's completely overworked and carrying a caseload that no human could manage effectively, but I'm suffering (and many others, I imagine) because of it.

At this point, there's still this looming question of what the heck is going to happen with my current kidneys.  Since I didn't have a follow-up action plan, I have no idea.  I asked to switch transplant nephrologists because the other one I met seemed to "get" me.  I can't really explain it, I just feel like my mental AND physical health will be better taken care of with this doctor.  My coordinator was able to get an appointment scheduled with him on September 29.  She put some labs in, but asked me to wait until after my appointment with the new doc to get them drawn...let him decide if he needs them or if he can use the last labs on file to help make a decision.  Until the 29th, I'll remain inactive on the list.  I'm still accruing wait time, but by being inactive, I won't run into the situation of a cadaver kidney being offered to me without a plan for my native kidneys.

I'm hanging in there.  Clearly I survived my 40th birthday (although I'm still bitter about it :).  I've been swelling a lot more lately, but I've also been eating like crap because I've been too damn tired to make a decent meal lately.  It's a never-ending circle of awful.  Hopefully I'll get it all together someday.  Hopefully I'll have a stretch of feeling good that I can get some things done...some extra meals made.  Fingers crossed!

A coworker of mine is putting me in contact with someone who had a kidney transplant this past January.  I'm hoping that will shine a bright light on the whole process from someone who's recently lived through it and is thriving :)