It’s been a while since I’ve been on here. Been busy busy busy. Good news is my fistula continues to work. I’ve really bonded with it. I check on it every day and would be so sad if it weren’t buzzing along. Otherwise I’ve been really busy with the kids and work. I changed positions at work in January and am loving the job but it’s a lot of hours and a lot of responsibility. I just haven’t had time to focus much on the whole threat of death that is this disease. I was getting pretty bogged down in it there for a minute, even hovering around martyrdom. Now, sometimes I have to remind myself that I’m not the healthiest person around and that taking it easy is really a necessity. Okay, so I’m selective in the moments when I use that as an excuse, but there have to be some benefits to having a fatal illness, I mean c’mon.
I’m still feeling pretty well although when I look in the mirror the dark circles under my eyes in contrast to the glow-in-the-dark paleness I’ve been displaying for years seems to make me look a little bit dead. But that’s okay. There’s makeup. My GFR is currently 13 something. So at this point my nephrologist is just waiting for me to get sick. I read that they won’t force you to go on dialysis until you get to a 6. Hopefully I can last that long. I wish there were better stories online from people who chronicled their last couple months before dialysis. It’s easy to get paranoid. Sometimes I wake up and feel like a big puffer fish and think that it must be water retention and I will probably need to start dialysis that afternoon. But then I pee a whole bunch and think, nah guess not.
I suppose I will chronicle myself and hopefully it will help someone else out. So without further ado, here are my current health stats:
Not on Dialysis
37 years old
Morning swelling of hands
Nighttime itchiness (mild)
Fatigue (probably 3 kids and full-time job related)
So remember how I complained about the second surgery’s incision being longer than the first? Well in the third surgery I got four incisions. See, it can always get worse. That’s the message here kids. (Not really, I’m actually a pretty optimistic person). There were only going to be three, but I woke up to an extra. I really do have Frankenstein’s arm now. The second surgery once again failed because my veins are too small. I said to the surgeon, nothing else on me is small, why must my veins be? I thought it at least deserved a chuckle. I got nada.
So number three was a whole different beast. The surgeon went into the back of my arm and got the basilic vein and moved it over an inch or two, hence all the incisions. The fourth one was so he could get a little more length (insert joke here).
Good news, man this thing can buzz! I had read from others in my predicament how excited they were to show people their buzzing veins and they’d ask everyone they knew to feel it. I thought that was a little nuts and so not what I was going to do. I mean I’m trying very hard not to become “the kidney lady.” BUT it really is cool and after you see a couple of your friends or family members faces when they feel it, you want to see that face again. So you ask everybody you come across to feel it until you’re to the point where you’re in a meeting and the first order of business is for a colleague to ask if everyone has felt Amy’s vein. Yes that actually happened…sort of.
I have yet to have my follow up appointment with my surgeon, but when I do I fully expect him to say this thing is working great and I’m totes ready for dialysis. Not that I want to be totes ready for dialysis, but I totes don’t want to have to have a chest catheter placed. That’s the goal at this point in my life. Never would’ve guessed that one. Oh well, it is what it is.
So the fistula that I talked about before didn’t work. Turns out my vein was just too small. It wasn’t going to grow enough to withstand dialysis pokes all the time. I saw my vascular surgeon on a Wednesday and had surgery number two on Friday. My new fistula is on the inside bend of the elbow. The incision is quite a bit longer than the one at the wrist but it’s healed a lot better because I didn’t let it get infected. So I think in the long run it’s not going to be super noticeable. Fortunately for me I’m a fan of the 3/4 sleeve. I will know if it’s working when I see the surgeon later this week. I think it is though because I can feel the pulse in it with my fingers (called a thrill). I don’t even know what I would do if it doesn’t work. That would stink big time. I woke up in the middle of the night once and realized I was sleeping on my fistula arm. That was a panic moment. Stinkin’ muscle memory. Hopefully I didn’t squish my lifeline. We shall see.
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