I apologize; I'm going to discuss bodily functions.
A nurse looking over my post operative tests offered me a compliment. "Your kidneys are rock stars! I have never seen filtration numbers like this!"
"Well, thanks," I told her.
Talking to my husband later, I was more emphatic. "HA! Vindication!"
My family got to listen to me air my grievance, again, about the time I tried to donate a kidney - I was a healthy match, and they turned me down.
Years ago, a man from our church congregation - I'll refer to him by his initial, S - developed kidney problems. He and his wife had moved to another part of town, but we still saw them occasionally. They're great people. After not seeing them for a few months, I could not believe the change in him. His skin was gray, his teeth and hair were falling out. I wanted to help.
His wife, children and step-children had all been tested for compatibility, but none were a match.
I offered to be tested. What good are healthy organs if you can't share, right? I don't smoke, I've never subjected my kidneys to alcohol, and I only need 1 myself. Right? My husband and kids were on board.
So, I was tested, and the initial blood test showed me to be a match. Huzzah!
I then got a phone call from the university medical center in the next state; they'd be handling the transplant, if all went well. The woman thanked me for my interest in donating. Then, obviously starting to fill out a pre-written questionnaire, said, "We know you're over 18. What do you weigh?" I told her, accurately. It makes no sense to lie to anyone, much less medical personnel. There were more questions, and she took down my address. They sent out a packet that I had to take with me to the doctor's office when I went.
I was sent to a nephrologist, a kidney specialist. When she walked in the room and saw me, she got a look of annoyance on her face. She informed me that she didn't think I'd be a suitable donor. "Generally, patients of your size aren't healthy enough to donate."
"Isn't that why we're running the tests? Isn't that what they'll tell us?" Geez, lady. Work on your bedside manner.
She began speaking to me the way you would to someone not very bright - slowly, with small words and too much explaining. "Generally, patients of your size and age are pre-diabetic. That means that your blood sugar is high, but you're not yet actually diabetic."
"I'm not pre-diabetic or diabetic. My blood sugar actually runs low."
"Even if that's true" - yeah, 'cause I'm a compulsive liar - "once you have only one kidney, your chance of diabetic complications is higher."
"That's why we're running tests, right?"
"I'm going to insist on extra tests for you," she said, detailing four or five extra tests that she would order. I needed heart monitoring, a stress test on a treadmill, and more not normally ordered. She was sure that the tests would show me to be "unsuitable."
All in all, with scheduling, juggling doctors, getting tests, and waiting for results, it was six months before it was all completed. One day, I had 14 vials of blood taken at once. The monitoring electrodes (and accompanying tingles) were a very odd experience. But, guess what? Green lights all around. My primary doctor said, "Everything looks great." I passed all the tests - not just squeaked by, but was certified to be in good health AND a great match, by medical experts.
I was nervous about the surgery, but my biggest concern was whether to travel the 5 hours or so to the transplant center by myself, or whether to bring my husband and kids.
Then I got a letter from the medical center, informing me that I would NOT be able to donate. Why? My weight; using that single criteria, they informed me that persons of my weight were not accepted as donors.
They would consider me for transplant if I could lose over 50 pounds in the next 6 weeks.
WELL.
I wrote a letter back. I write really great letters. I write even better complaint letters.
I pointed out that my weight was quite literally the 1st thing they had asked me in that first phone call. If it was in the unacceptable range, THAT would have been the appropriate time to say something, I said. I would have thought that they were being arbitrary and nitpicky, but hey, rules are rules. That would have been that. But to inform me of this after SIX MONTHS of testing? Oh, no. Not OK.
"You state, repeatedly," I wrote, "that your primary concern is the health of S and myself. This is obviously not the case. S's health cannot be your primary concern, or you would not have spent six months of a terminally ill man's life, and thousands of dollars of his insurance money, paying for tests that you would then disregard. Why would you order tests if their results were not integral to your decision? It seems a waste of resources and time, and S's time is limited.
My health cannot be your primary concern either, because you have ignored all of the tests and medical opinions indicating that I am healthy, in no danger, and a tissue match. Losing weight at the rate you recommended is also going against every medical opinion on weight loss, which states that drastic weight loss should take place gradually, and such drastic weight loss in a short period of time would thus endanger my health and wellbeing.
If all you needed was a single number, my weight, you had that in the first phone call. There would be NO need for any further tests if that is all your decision would be based on, but, in fact, you not only tested me, but ordered extra tests."
I hinted rather broadly that taking six months to do very extensive and very expensive tests, only to ignore the results, amounted to medical malpractice.
Good gravy, people! Do you want a lawsuit? I can do that. So could S, or his family.
Which is probably why I received a phone call as soon as they received the letter. "Hi," said the woman, tentatively. "I understand that you're unhappy. Very unhappy."
I then verbally expressed my unhappiness, saying things like, "You do realize that S's illness is terminal, right? Did having a potential living donor knock him off of, or down on, the waiting list for a cadaver kidney? Because if it did, I will be even MORE unhappy."
"No! No! He's still on the list!"
This left us circling back to the central point. As she attempted to defend their decision by telling me all the risks of obesity, and I kept asking, "So, why did you order any other testing? If you knew the first time that you spoke to me that you wouldn't accept me, why did you spend six months running unnecessary tests?"
"The tests are very necessary! They determine your eligibility."
"And yet, you did not use ANY of their data in making this decision! All you wanted was ONE number, my weight, which I gave to you over half a year ago!"
We were at an impasse.
I'm pretty sure that the answer was, "We don't want to be accused of being weight bigots, so we don't tell you this upfront. We let you be tested because we assumed that the tests would show us that you're wildly unhealthy, and we'd be able to deny you without saying that we don't consider fat people." They won't say that, of course. That would open them up to lawsuits, you know.
Speaking with S on the phone, I growled. "They didn't even ask me about things that would have sounded scary, like the pituitary tumors I was diagnosed with at 24. That, I would have understood."
That gave him pause. "You have tumors, but they didn't ask about them?"
"Yeah. They asked if I'd ever had cancer, but they're totally benign."
"The problem is, anything you have, you might pass to me. I can't afford to take on any more health problems, on top of what I've already been through." Well, that makes sense. I was not offended at all when he said, "Would you mind withdrawing from consideration?"
Not if it's your own decision, based on your preferences and/or information received! In fact, I'd already been removed from consideration, so all I had to do was not contest it. And I see his point. I've had tumors, cysts, fibroids - I grow weird things. (But no cancer. Or diabetes.) If my kidney took that propensity to S, well, that could be a pain in the butt. I understand his reticence.
I learned, though, not to gripe to other people about the weight factor. Mentioning how badly I thought they'd handled everything to another woman at church, all she seemed to hear was, "You're too fat, and you're ignoring medical advice."
"You could lose the weight if you wanted to," she said rather pointedly.
Aside from the fact that I'd just been certified as healthy, at my current weight, the fact that a crash diet is always a bad plan, and the fact that it's none of her business, there's the fact that endocrine and thyroid issues, which I've had all my life, mean that my weight is only sketchily related to what I eat or how much I exercise. A friend with a similar endocrine issue is a professional dancer (obviously in great shape), and once restricted herself to only 1000 calories a day and still gained significant weight. (By "significant" I mean "at least double digit numbers." I can't stand it when people call two pounds "weight gain.") But let's just circle back to "none of her business." So, I don't usually discuss it.
Can I call myself "healthy" with endocrine and thyroid issues? Well, what I can say is that every test the doctors ordered said I was within the success parameters. That's not subjective. And if they aren't asking the right questions, well, maybe World Renowned University Medical Center ought to rethink their questions.
In a way, they did. A few more months passed, and I got a call again. "We've reconsidered your case," World Renowned University Medical Center said. "We've discovered that we can have success with donors your size." All of my tests were too old to use, though - would I mind getting all of the tests done again? Yes. I would mind.
"S has asked that I remove myself from consideration. Thank you."
The good news is that S agreed to a transplant from a cadaver kidney from a donor past the usual age, and the last time I saw him, he looked and felt fantastic. The kidney from the older donor was doing a great job.
So, why am I now going from "don't discuss it" to "put it out on the Internet"?
Because my kidneys are rock stars, with filtration numbers rarely seen. Boo yah.
And yeah, even many years later, my family occasionally has to listen to me whine about "the time I tried to give away one of my organs, and they wouldn't even take it."
