NOT At All What I Was Expecting

NOT The News I Was Expecting
Friday, July 09, 2010

I went to see the kidney doctor today. A routine follow-up visit. I'd seen him in May after my lab work from my annual physical was a bit off kilter. Nothing big, nothing expected. Check the labs (which the nurse had told me 6 weeks ago were normal except for a slight elevation in my Creatinine). Get his blessing and see him in a year. (And that was only because my dad is in end stage renal failure, on dialysis and waiting for a kidney transplant, so my risk is higher than usual)

Well, it turned out A LOT different.

For starters, my labs were NOT all normal. In fact, they were anything but. Apparently something is way out of whack with my parathyroid levels, so now I have to take a new prescription (which none of the pharmacies around here seem to carry, and I'm leaving for vacation in 36 hours.) On top of that, there are other levels that are concerning him. And these labs were done when I was very well hydrated, eating perfectly, doing everything right.

I asked him if all this could have something to do with the fact that I am retaining fluid like crazy. Nope. But he IS concerned with the fluid retention. Not nearly as much as I am--I'M the one whose clothes don't fit because I've gained over 15 pounds in 2 weeks from fluid retention! He did say absolutely not to take a diuretic, which I had quite honestly been considering. So, scratch that idea!

The long and the short of it is,, I have to go back when I return from vacation. He'll redo the labs at that time. And then he wants to see me every 3-4 months after that. A bit of a change from the once a year I'd been expecting!

Also, when I went last time, I'd been quite distressed to see that he put my diagnosis at Stage 2 Chronic Kidney Disease (especially since I hadn't realized I even HAD kidney disease! I figured he was basing that on the labs from my annual, which had been done when I was NOT eating right, and not particularly well hydrated. So, with the improved labs I was expecting, I thought that might back off to Stage 1.

Wrong again. I am now listed as Stage THREE (0ut of 6).

I am beyond upset with this. Here I've spent the last 2 1/2 years losing weight, getting in shape, exercising, eating right, drinking water like a fish, and this is the outcome? And it's getting WORSE? How? Why? I've never had high blood pressure (and it's now 100/70, even WITH the fluid retention!) My cholesterol is about 130. I've been so pleased with the improvements in my general health. I stopped taking anti-inflammatories for arthritis, I stopped taking a diuretic (which I'd only needed because the arthritis meds caused fluid retention). And we thought the meds were the cause of the kidney problems. But now I've been off them for over 2 months and I'm getting worse instead of better.

I guess the worst thing of this is knowing what the future holds if this progresses. I've seen my dad and what he's gone through. He's been on the transplant list for over 2 years, and they told him he's got at least another 1 /12 to 2 years to wait. Meanwhile he's on peritoneal dialysis, which requires him to hook up to a machine for 9 hours every night. It's the best option for dialysis because you feel better with it, rather than sick 1/2 the time like with hemodialysis, and it can be done at home rather than going into a dialysis center 3 days a week for hours on end.

But I'm not a candidate for peritoneal dialysis. 7 hernia repairs have left me with an abdomen full of scar tissue, which puts me out of the running. So my only options would be hemodialysis or a transplant. And the average wait for a transplant is 2-3 years or more. I know I'm a long way off from there, but still, sometimes a little knowledge is a dangerous thing. I know too much, I've seen too much. Ignorance is bliss, but I don't have that pleasure.

I hate this feeling of helplessness. There is not one damn thing I can do about this. The doctor's instructions consisted of "take this medicine" and "stay hydrated". But I want more! I want to DO something to make this go away. I want to take control of this aspect of my health, as I have taken control of others! Why won't my body cooperate?

I'd go have a pity party for myself but I'm too depressed.

Getting old really sucks!