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View Diary: This is what losing your kidneys looks like (229 comments)

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  •  A note from Kitsap River's partner (36+ / 0-)

    It's not easy.

    Nothing worth doing seems to be easy, but watching your beloved die day after day after day has to be pretty damned high on the list.

    That's what I was doing in the weeks and months before she started dialysis, even after we could get healthcare benefits again.

    "Benefits". Hah. The "privilege" of my employer paying a high enough premium so that my own contribution to the cost of insurance is only "burdensome" instead of "intolerable".

    Last week we also had the "privilege" of being able to appeal the original denial of her SSDI claim. It's only been two years or so since she originally filed, and in this day and age I suppose that's considered "fast". I was there for moral support and to offer testimony if asked. I wasn't, but our lawyer had me write a commentary on how the kidney disease and other medical issues had affected her.

    Here are some excerpts, slightly edited for privacy:

    I met Kitsap River in mid-2002. We began dating in late 2002, I proposed to her in January 2003, we combined our households in the spring of 2003, and in January 2004 we were married.

    When I first got to know her, she was intelligent, witty, cheerful, tireless, and blessed with more personal energy than the average 8-year-old. But since her kidney disease began to worsen, and certainly since she began dialysis, I’m aware of significant deterioration. She now has memory problems and a halting speech pattern, which I can see frustrates her immensely. She rarely has enough energy to get through a typical day, and when she exerts herself she’ll spend the next several days almost completely drained.

    How she made it through this past academic quarter, studying algebra with an almost feverish intensity, I'll never know.

    Nausea and fatigue were among the symptoms of her continually declining kidney function. In early 2007 her nephrologist determined she had chronic kidney disease, and despite every attempt at quelling the illness she was down to 15% kidney function by late 2007.  As an example of how pervasive her fatigue had become, late in 2007 we invited a number of friends for a home-cooked feast. She had been an outstanding chef, but by then she was so tired that she had to go to bed mid-way through preparation, and one of our guests took over some of the cooking duties. She had also devoted several summers to canning and jam-making, but has not been able to do so due to being unable to keep a tight grip on pots, pans, and utensils.

    We have a tradition of hosting a Yuletide feast; we serve goose and salmon, and those of our guests who can do so bring a side dish or dessert. I don't think she even got to taste anything from that feast until the next day, when she had recovered enough to drag herself out of bed.

    Despite continuous attempts to quell the loss of kidney function, in December 2007 her nephrologist prescribed dialysis. That month her peritoneal dialysis catheter was surgically implanted, and in January 2008 she began daily home dialysis treatments.

    Throughout this period, controlling her diabetes was difficult, as many of the drugs in common use are also antagonistic to the kidneys.  Finding an effective mix was an extended process, with many episodes of both hyper- and hypo-glycemia.  One evening I found her collapsed on our bed, and I was unable to rouse her for what seemed like hours.  I was on the verge of calling for emergency medical assistance when she finally awakened.  Her blood glucose had climbed back up to the 40-50 range; 70 is considered low, and 90-110 is normal.  At the other extreme, when she was finally able to resume regular medical care, her long-term blood glucose was in the 340-350 range, which would normally indicate immediate hospitalization.

    Needless to say, we couldn't have come anywhere near affording even a trip to the Emergency Room, never mind the two or three days of in-hosipital monitoring this would have entailed.

    Even though dialysis has improved her condition, she has never recovered the vitality I knew from our first months together.  Her complexion has gone from roses-and-cream to being drawn and sallow. She still tires easily, and can’t walk more than a few blocks without having to rest for a moment.

    She never gives up, not really -- even though she's asked me time and time again why I would want to stay with her when I could have someone healthy and whole. During the Obama campaign, she was a top phone-bank caller, which she could do in manageable batches. (I've got the October and November long-distance bills to show it, too.) Even that was sometimes more than she could handle, though. And doorbelling was right out.

    I can't begin to express how proud I am of her, of her efforts here and elsewhere to make Single Payer a reality for everyone.

    And I can't thank you Kossacks enough for putting her on the Rec List for the very first time.

    I don't have enough words to tell her how much I love her, but I think I have something in my eyes that's making them water.

    Thank you.

    Bush/Cheney ordered the torture of prisoners to generate false information, in order to help start a war which killed hundreds of thousands of people.

    by Charles CurtisStanley on Wed Jun 10, 2009 at 10:27:58 PM PDT

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