Kidney Update #2

Here's my sad soppy saga. I am starting to go through tests to get on a transplant list. (no cancer wanted - if I have cancer, they'll just throw me away). Anyway - went to see the kidney doctor today (saw the dentist last Thursday and this last Monday for what can only be described as roto rooter of the gums, with anesthesia and nitrous). So I'm already kind of whacked out of shape.

Then the doc tells me that my kidneys are functioning at ten percent of normal. Ten Percent. yeesh. I feel ok, really. The kidneys are shutting down but not telling the rest of my body - so my brain thinks I'm doing just fine thank you very much. But one of the things the kidneys do is "talk" to the bone marrow who talks to the blood who toils and turns out red blood cells - and the kidneys aren't talking, so I'm really low on blood. I'm getting what's called an EPO shot, once a week for three weeks and then once a month - if that doesn't work - it's a blood transfusion.

Are your eyes falling out of your head yet?

So - he said to watch for these symptoms: fatigue, feeling out of breath crossing the street, going up the stairs; itching skin; nausea; dry heaves; and anorexia (I wish). Well, as he starts clicking these things off, I'm still insisting I "feel FINE" but it's flashing through my mind - last night's itchy leg episode that about drove me insane; yesterday morning I didn't even want to brush my teeth because my gums still hurt and just the thought was making me feel like throwing up - and lately I don't just throw up - I do it repeatedly several times and then go into the dry heaves for several bouts; and I've started taking the elevator to get from the 15th floor to the 16th floor; and last night I gave Mechanic Man half of my hamburger - and no fries. I'm thinking, Jeanie you are so out of shape and need to diet and exercise. But Doc said that wasn't my problem. I have kidney disease related anemia. It's my uncommunicative kidneys again. Those silent buggers.

I went to Riverfront Square and then to Rite Aid over lunch. I was panting the entire way and just pooped by the time I got back. And I've noticed this before when I've gone to the Riverfront to get my hair cut - I'd start back and think, o boy, if someone would just carry me, it would be sheer bliss.

I'm beginning to think I'm SICK.

I’m still insisting I feel fine. I’m still trying to think positive thoughts and not dwell on this. I’m still trying to tell myself I’m not in denial. It’s a quandary. If I think about it, I’ll get worse. I’ll get worse if I don’t think about it. If I think positive thoughts, my kidneys just might go completely gonzo on me and turn out their lights because I’ve got my head in the sand. If I think negative thoughts, like, you’re-going-to-be-on-dialysis-for-the-REST-of-your-life (this is a litany I heard my mother sing to Dad for seven years until he finally pulled the plug on himself), then I’ll be on dialysis that much sooner. They’ll never find a donor kidney for me. I’ll have a permanent tube in my stomach or my arm, depending on what type of dialysis. What about sex? Bikini’s? (well, I wouldn’t be caught dead in a bikini – but what IF?) Slinky dresses? The too-sexy-for-my-jeans look?

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Transplants - Redux

Well, will wonders never cease! I'd like to be selfish enough to think my last blog post had some effect. The insurance company relented on their waiting period stipulation - Mr. Watley is now back on the transplant list. Good luck to you and God bless!

See Spokesman Review article at http://www.spokesmanreview.com/breaking/story.asp?ID=14307

Transplants, Waiting Periods, Insurance Gods, O My

Dying for a transplant
John Stucke
Staff writer
March 26, 2008

Fred Watley is missing his chance for a liver transplant.

A new organ may have helped the 59-year-old substance abuse counselor steer more teens away from drugs and booze; may have helped him raise his 10-year-old son into a young man; may have helped him grow old with LiAnne, his wife of 11 years. . . .

I was dismayed when I read this article in the Spokesman Wednesday morning. The intertwining of transplants and health insurance coverage is a sticky subject. It is beyond comprehension that the government would support waiting periods for insurance companies on transplants. I can hear their little wheels turning: "gee, if we have a waiting period of six months, the chances are good the patient will die before we have to fork money out for a transplant."

Not only do potential transplant recipients have to go through their insurance company's waiting period, then if they are fortunate enough to get a match with a new organ, they have to go through the surgery, and once home, they have to jump through the Medicare hoops for post-transplant care which includes the very expensive anti-rejection drugs a transplant recipient must take for the rest of his or her life. The catch here is that Medicare will cover an organ transplant for only three years – not for the lifetime of the organ recipient. Again, the governmental mumblings can be heard, saying, "well, we only expect the transplant recipient to live an additional three years, once they have received the new organ. Then they die." So the recipient finds themselves in a position three years after having a successful transplant of paying $3,000 to $5,000 a month for the drugs they must take to keep their organ viable.

It's a matter of life and death. With a transplant, Mr. Watley would have a chance of living 20 years or more. (The down side of transplants is that the new organ will start to fade out after 20 years.) Now he isn't even going to make the six month waiting period.

I have a familial kidney disease, Polycystic Kidney Disease (PKD), which is the most common genetic disease even above diabetes, however the public is much more aware of diabetes than PKD. April is Organ Donor Month. We are hearing ads all the time to encourage people to list themselves as organ donors on their driver's license. Just recently we read about a customer at a Starbuck's in Seattle getting a new kidney from her barrister. Her disease: Polycystic Kidney Disease.

My sister had a transplant eight years ago from a live donor; my brother had a transplant two years ago from a person who had an organ donor card. Both are alive and active and productive. Both were "lucky" in that they lived through the waiting period. My sister was let go from her job (ironically in a transplant center in Seattle) because she was out sick a lot. The problem is that transplant recipients not only have to take 10-20 pills every day to keep from rejecting their new organ, but their built-in immunity is wiped out and they are susceptible to anyone's common cold or flu or other contagious disease and it negatively impacts the organ recipient. She went on Medicare but only received three years of coverage. Being well under 65, she couldn't qualify for Medicaid coverage until her and her husband's income was down to a minimum ($40,000 for a married couple, $2,000 for a single person). My brother is self employed while his wife has excellent insurance coverage for the two of them – so he has a double-sided "good luck" coin: he has insurance through his wife, and, he works alone so he isn't bombarded by sniffles, coughs, wheezes and the cubicle neighbor who has to confide to anyone in breathing-in distance their blow-by-blow latest crud.

As for me, I am living on the hope that I am "status quo" and that I can live to old, old age with no problems with this disease. My alternative is dialysis – even Mr. Watley hasn't had that option. Or a transplant.

Have a spare kidney??????