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o hai
03 Oct 2008 21:27 EDT
hai guize, long time no blogg.
things are in a semi-stable state around here right now. i’ve been going to the blood cleaners (martinized for your protection!) three days a week. there have been a few hiccups in the process, as is typical when starting dialysis, but we’ve got it figured out now. I spend 6:15-9:00 am MWF at the dialysis clinic. they have individual flat panel TVs to distract you from the fact they’re stealing your blood.
so this will probably go on for a few more weeks until the eventual transplant. we’re making progress on the transplant, too. myself, monica, and shark all got our tissue-typing tests done this week. we’ll know the results within two weeks.
i felt good enough to go back to work this week, by the way. that made the boys very happy. not full time yet, but stopping in the office and doing some remote work as well.
.
boys are doing as expected — upset that daddy’s sick, but handling it very well. except luke, who is just rolling along like nothing is out of the ordinary we have a family shrink practice, by the way … the family that sees psychiatrists together stays together! i highly recommend doing this, just like you do with family doctors.
monica is a rock. she is the hardest working woman in the world and the most devoted wife in history. i love her to pieces.
physiology
30 Jun 2008 21:27 EDT
[Warning: This is another friends-only TMI blog alert. If you desire something pleasant, you should go read The Littlest Elf.]
Monica and I had a visit with my primary nephrologist today. Yes, I see two of the same specialist. I’m cool like that. Monica came along to get the whole scoop firsthand, since these recent visits tend to be chock-full of news.
We confirmed that my kidney function continues its downhill slide, albeit slowly. The doc figures I have until September before I have to go on dialysis as an emergency measure. That is, unless I have a new kidney before then.
He officially recommended we start the work-up for a new kidney transplant today. He says I am a perfect candidate: relatively young, relatively healthy (no problems that aren’t kidney-related). He asked which kind of dialysis do I prefer, and I said “None, I want a kidney transplant!” To which he said, “Good answer.”
In the meantime, my symptoms of uremia (the general term for the effects of poor kidney function) have become unfortunately noticeable. Here is the laundry list. I’m not bitchin’, I’m just saying’. My gout has become an almost daily attack (he put me on allopurinol to combat this). My blood electrolytes and pH are all out of whack (he put me on phosphate binders and bicarb to combat this). My parathyroid glands are in overdrive (he put me on a special form of vitamin D). My blood pressure is creeping up (stop one blood pressure med, start another). My red blood count is very low – hematocrit of 8! – meaning severe anemia (he put me on 40,000 units of the hormone EPO). Finally, I have lost 10 pounds since the beginning of May. This last figure is the most worrisome to my doctor. I am under doctor’s orders to gorge myself! 
Funny thing is, we went on our usual hike this weekend and I easily did a couple miles at Glacier Ridge Metro Park in 85 degree weather with no ill effects. My doctor seemed taken aback by this since at a hematocrit of 8 most other patients would just be sleeping all day…
So: next steps are as follows. My doc’s transplant coordinator will contact me for the workups and tests I have to officially do. Then I see the transplant nephrologist again at Ohio State. Then potential donors (three so far, keep ‘em comin’!) will also be worked up. Probably be September-ish when this all might come to a head and be prepared for surgery.
So, that’s where I am, folks. Thanks for listening.
PS Monica is my rock.
for the morbidly curious
10 Jun 2008 21:30 EDT
since many of you have asked (damn vampires):
I am blood type A Positive.
I can receive a kidney from anyone who is A Positive, A Negative, O Positive, or O Negative.
And is an otherwise healthy adult.
Now cut it out.
Get it? “Cut it out”? Get it?
update (as previously threatened)
09 Jun 2008 21:31 EDT
WARNING: TMI ALERT.
Had a lovely visit with a transplant nephrologist at Ohio State University today. We went in detail over renal pathology results, 4 weeks of blood tests, and symptoms such as high blood pressure, etc.
The consensus opinion of the doc and I is basically: this kidney doesn’t work no more. In layman’s terms, I have about 10% kidney function, and it’s getting slightly worse, not better. The 10% is all from my borrowed kidney – my original kidneys haven’t pulled their own weight in about 19 years. [In non-layman's terms, I have a creatinine of 7.6 and about 90% of the kidney's glomeruli showing fibrous scarring.]
We made some further medication changes to extend the time that this kidney has while I make a decision about my next course of treatment. We’re hoping to extend the useful life by weeks to maybe months, but that’s about it. My choices are basically, dialysis or another transplant. If dialysis, I have to decide what kind. However, I am strongly leaning toward transplant. As far as I’m concerned, I’ll have one tomorrow if I could. My choices there are cadaveric (long wait, probably on dialysis), or living donor.
What I would see as ideal is: get a new kidney sewed in ASAP, spend a week or so recovering in the hospital, and then hit the ground running. I’d like to get it all done before school starts in the fall if possible, although I may not control that timing. I’ve got a life to live here, folks.
So – there’s the scoop all. I’ll keep you posted.
Please keep Monica and the boys in your thoughts and prayers. Unfortunately the comings months may be more difficult for them than they deserve.
As for me: bring it on.
wish me luck
06 Jun 2008 21:33 EDT
Monday afternoon I have my first visit at the Ohio State U Medical Center Post-Transplant Clinic. We’ll review all my tests and 5 weeks of blood work. Then we’ll decide how well my borrowed organ continues to work under the new medication regime, if further medication changes need to be made, or if more drastic measures such as dialysis or another transplant are needed. Or I may be told, stay the course.
Stay tuned.
update update
09 May 2008 21:35 EDT
back home almost exactly 48 hours after i went in to osu hospital. poked and prodded in every conceivable way, and some inconceivable. do you know how hard it is to lie supine unmoving for six hours? what a pain. anyway, the considered opinion of nephrologists, radiologists, and pathologists is that i’ve suffered damage to my kidney caused by the long-term use of my medications (irony). the damage is partially permanent, but is also partially reversible through changing medications. in the scheme of things, this is not the worst news by any means.
so i’m starting new medications tomorrow, and we’ll see how it goes. thanks all.
update
07 May 2008 21:37 EDT
Most of you know I had a kidney transplant (if you didn’t, you do now) about 17 years ago. Over the past week I’ve had two blood tests come back with bad results which are very out of the ordinary for me. (Creatinine of 6.1 for any medical types out there). So I’m being admitted today to OSU hospital “for further tests”, as they euphemistically call it. I feel physically well, but that doesn’t necessarily mean anything, so I’ll be there until they figure it out and fix it.
My favor from all of you is to think of Monica for me. She has a tough enough job herding those three boys around when I’m up an at ‘em. With the added stress of me being in hospital, she probably could use some kind thoughts and prayers.
Thanks all, ttyl.
about mark beadles
I write the things you read here. Polymath renaissance redneck. I build software, stories, and young men. More...on the desk
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