The other day I had to tell someone that I'm on dialysis. She and her friend were horrified, with expressions that indicated they'd just seen a ghost. And yet to the objective eye, I looked good, even healthy. But what they saw was a cadaver.
I thought back to how I used to think of dialysis patients until just recently. I, too, had thought of them as cadavers, on their way out. Not that I had had that much contact with them, but the few instances stand out in my mind.
Shortly after I delivered Aaron--now almost 23 years ago--my doctor wrote a referral to a nephrologist. This memory is rather dim in some respects, but I remember that his office was in a hemodialysis clinic. The patients were abject and gaunt and much, much older than me, 50 years older. The nephrologist gave me a mildly inappropriate examination, palpating my belly over and over again, and resting his hand on my vulva as he spoke to me. I suppose I was the youngest thing he'd seen at the clinic in a very long time.
After that, I didn't see a nephrologist for maybe 15 years. In retrospect, no doubt a mistake.
I did have a student in one of my classes at Cal State in the late '80s who was a dialysis patient. She was perhaps in her early or mid-30s. When she explained her situation to me, I automatically thought of her days as numbered, even though she didn't look sick.
And then there was my friend Georgette's mom. I never met her, but I knew she was on dialysis. And then she died.
Now things are different, now that I'm one of the undead! I realize I have health challenges, and I know what the odds are--the average life span on dialysis is five years, the wait for a cadaver's kidney in So Cal is nine years. But even so, I sure don't feel that death is breathing down my neck.
An old lesson learned once again: Viewing the world from the inside out is a lot different than seeing it from the outside and imagining the interior.
Monday, February 23, 2009
Insight of the Week
Sometimes someone says something that just resonates in your very soul as the truth and you can't stop thinking about it. This is what happened this past Saturday at the Kidney Beings (cute, huh!) support group meeting.
I voiced my frustration and anger about the miscommunication, withholding of information, and insufficient training I have experienced with the PD clinic. One long-time support group member said she thought I had been treated shabbily and had been inadequately trained in PD therapy, but then added, "Just remember this, Heidi: Long after you are dead, everyone at the PD clinic will still have a job."
Boy, there are so many ways one can take what she said! In its tamest form, it means: Don't get yourself worked up about things you can't change. You're dealing with an entrenched system that is sometimes dysfunctional, but it is too big of a job to try to reform it. All you need be concerned about is your care, not changing the way an inefficient and faulty system operates because 20 years from now, it's probably still going to be operating in the same dysfunctional way.
A harsher way of viewing her comment is most likely also true: So many kidney patients die within a few years of beginning dialysis. In fact, the average life expectancy on dialysis is only five years. So, during the course of a career as a PD nurse or a nephrologist, one is apt to see many, many patients die. So perhaps they figure that inconsistent instructions or no instructions or the wrong doses of medications are no big deal, that if it's not this that kills a patient, something else will. So in other words, sloppiness is not something that needs to be prevented because there's so much that can go wrong with a kidney patient that some slip-ups could never be tracked back to a single cause.
Also, as in any profession, for most people, it's just a job, something to pay the bills. It's not a life calling or a mission or a labor of love. If I die or if 40 percent of the patients die in any given year, so what, we still get a check!
I am so grateful for Debbie's comment. It puts everything in perspective. Her comment makes it clear that I can't assume that the nurses and doctors are focused on their job. They could very well be like the grocery store clerks who, when you tell them you don't need a bag, they look right at you, say "OK," and put your purchase into a bag.
The bottom line is that I have to watch out for myself because no one else may be doing that. I have always been an ask-questions patient, an informed purveyor of medical services, but now I will have to increase my vigilance. Because that's MY job!
I voiced my frustration and anger about the miscommunication, withholding of information, and insufficient training I have experienced with the PD clinic. One long-time support group member said she thought I had been treated shabbily and had been inadequately trained in PD therapy, but then added, "Just remember this, Heidi: Long after you are dead, everyone at the PD clinic will still have a job."
Boy, there are so many ways one can take what she said! In its tamest form, it means: Don't get yourself worked up about things you can't change. You're dealing with an entrenched system that is sometimes dysfunctional, but it is too big of a job to try to reform it. All you need be concerned about is your care, not changing the way an inefficient and faulty system operates because 20 years from now, it's probably still going to be operating in the same dysfunctional way.
A harsher way of viewing her comment is most likely also true: So many kidney patients die within a few years of beginning dialysis. In fact, the average life expectancy on dialysis is only five years. So, during the course of a career as a PD nurse or a nephrologist, one is apt to see many, many patients die. So perhaps they figure that inconsistent instructions or no instructions or the wrong doses of medications are no big deal, that if it's not this that kills a patient, something else will. So in other words, sloppiness is not something that needs to be prevented because there's so much that can go wrong with a kidney patient that some slip-ups could never be tracked back to a single cause.
Also, as in any profession, for most people, it's just a job, something to pay the bills. It's not a life calling or a mission or a labor of love. If I die or if 40 percent of the patients die in any given year, so what, we still get a check!
I am so grateful for Debbie's comment. It puts everything in perspective. Her comment makes it clear that I can't assume that the nurses and doctors are focused on their job. They could very well be like the grocery store clerks who, when you tell them you don't need a bag, they look right at you, say "OK," and put your purchase into a bag.
The bottom line is that I have to watch out for myself because no one else may be doing that. I have always been an ask-questions patient, an informed purveyor of medical services, but now I will have to increase my vigilance. Because that's MY job!
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