Healthcare (General)

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Dialysis Access

Well, I went to my nephrologist yesterday for more bad news. My creatine is now 7.0 (so, its gone up 1 point steadily for the last 4 months... not good) and suddenly my 'overly optimistic' doctor has decided he was being too optimistic. Now the race is on to get me set up with a dialysis access. I'm glad I pushed that point a couple of months ago and got started on the process. At least I'm somewhat prepared. Which brings me to another point that I don't think I ever wrote about... About a month ago, after much insisting to my nephrologist, I went to see the vascular surgeon about my dialysis access. I wanted to get the process started well in advance of my actually needing it because I have a very demanding schedule (work, mommyhood, social life, etc.) That way, I wouldn't be rushed or get into an 'emergency' situation where I needed it RIGHT NOW without plenty of time. So, I went to the surgeon my nephrologist referred me to. The new doctor whisked into the room and told me he was going to be putting an graft in my arm. I told him I didn't want a graft, if I could avoid it, and that I preferred an AV Fistula, instead. His eyebrows raised in surprise realizing that I know what I'm talking about. He asked me why. I told him that the obvious reason for choosing a Fistula over a Graft is that a Fistula is 100% natural (connecting one's own artery to a vein) whereas a Graft is not (it connects a piece of tubing to the artery and vein.) Fistulas last longer and work better, as they are 'natural' and Grafts wear out sooner. (No dialysis lasts a lifetime and one usually has to get more than one over time...) The doctor seemed irritated with me and suggested that I just accept his recommendation. I told him I at least wanted to be tested for a Fistula, and that if I didn't qualify, then I would accept a Graft (what other choice would I have?) He acted like it was a big waste of time, but agreed to write me a script for the ultrasounds needed to see if my veins were big enough. I had the ultrasound done 2 weeks ago. It showed that I do have large enough veins in my right arm for an AV Fistula. I was hoping for my left arm, since I'm right-handed, but I'll take a Fistula in ANY arm, over a graft. I'm so glad I insisted to the doctor that I be tested... it just goes to prove, again, how important it is to be an informed patient! I will see the surgeon again on Wednesday and my surgery is scheduled for next Tues (a week from today.) I'm pretty sure its an outpatient surgery so hopefully it won't be a big deal. The nephrologist doesn't think my kidneys will last until Christmas at this point.... which is a bummer. Ken and I have a trip to Flagstaff, AZ planned to visit family. Its not that I couldn't do dialysis there, its just that I would barely be getting started and not even into a routine, yet. Oh, yes, and one more thing. My neph switched around my drugs again, a new BP medication again. I'm losing track of all the names of the medications I'm on... so its no wonder I feel dizzy today!!!

RANTS

I thought I'd come to terms with dialysis. Now the DOCTORS are the ones who are making me nervous again. They treat dialysis as if only a crazy person would 'choose' dialysis and are really pushing me to get on a transplant list. They don't get it. No one in their right mind would CHOOSE dialysis over having normal, functioning kidneys. But, since I don't have NORMAL FUNCTIONING KIDNEYS I have to make a choice based on what my options are. OK, so maybe I'll change my mind... but for now I DON'T WANT A TRANSPLANT... Is that so bad? I know how all the anti-rejection drugs will make me feel (since I've been on most of them) and I just don't want to live like that. Dialysis seems like the easier option. It's my choice, right?

More Kidney Stuff

Wow. My rate of kidney function decline is really scaring even me. In 4 weeks my creatine went from 5.0 to 6.0 (bad bad bad bad) My doctor was 'optimistic' at my appointment on Friday, but after getting the labs back today, I'd be curious to know what he thinks now. He keeps saying that he thinks I'm going to be fine (not need dialysis) for at least another year. He seems to have some impression that my creatine will just suddenly be fine... it irritates me how overly un-realistic he is. God knows being that way isn't fooling ME, of all people. 6.0 is bad... very, very bad. My BUN climbed to 50, too (last time it was 39 - anything above 25 is abnormal) indicating my kidneys are basically doing a piss-poor job (no pun intended) at... well... pissing. To put it into perspective - it took me 11 years for my creatine to go from 1.3 (nearly normal) to 3.2 ... and only 11 months for it to go from 3.2 to 6.0 Yikes. In other news... I don't feel so bad. Having mostly good days lately. :)

... and another thing...

I didn't mean for it to sound like I WANT to start dialysis sooner than later... I just meant that it's inevitable at this point and after 12 years of waiting I just want to "get it on". I just want to live my life and feel better. Hanging in limbo like this is making me nuts. I hate not being able to fully plan my days never knowing if I'll feel alive or half-dead sick. Its a real drag.

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