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!
Saturday, February 21, 2009
My New Decor
How do you like my new decor? It's the therapy look. Pictured here is the cycler, the machine I hook up to at night. Also the side table that I used at first, before I bought my spiffy therapy table on wheels, with shelves for surgical masks, gynecological towelettes for cleaning my hands before hooking up; clamps; gauze; hydrogen peroxide; rolls and rolls of medical tape; and a dialysis bag connector.
And here's the collection jug and the container with bleached, white towels that I place on my lap when doing the hook-up so that the transfer set doesn't rub up against my germ-laden attire. One towel per day because any item that sits out collects dirt and germs.
On the days I took these photos, my supplies were tucked under my bed. But when I receive an order of dialysis bags, antibacterial caps for the transfer set, tubing, and all the rest, not everything fits under the bed, and I have boxes stacked in the living room and up against the bedroom walls. I asked for and was granted a bimonthly--rather than a monthly--shipment. Thank goodness because otherwise there would be no room for me inside my apartment!
Friday, February 20, 2009
My Belly Buried Under a Lot of Tape
This is a photo I took of my belly 10 days post-surgery. The swelling has gone down considerably since then, but the bandages and tubing are quite similar.
At the upper edge of the photo is the PD belt, an elastic band that goes about my waist into which I can insert the transfer set (the end of the tube that gets hooked up to the dialysis machine). This keeps the transfer set from dangling and thereby prevents it from getting snagged, pulled, or dirtied.
The warning sign on the post-surgery dressing has been removed. The message shown on this photo says that only a PD nurse can touch the dressing, with numbers at which the on-call nurse can be reached.
But otherwise, this is it, folks.
Perhaps this is how someone who grew a third arm or leg while sleeping might feel. She wakes up in the morning, and there it is--another appendage! It's still all so strange and even a bit creepy.
I have to touch my belly to wash it with antibacterial soap, dab it with peroxide, and douse it with special cream every day, but otherwise, I don't touch it. I used to lie in bed at night and rub my belly. I was so pleased with its shape, its tautness, its size that was smaller than most women's my age, for sure. I really liked my belly.
Recently I noticed the tubing under the skin. Not just at the exit site, but several places, as if a foot or more of tubing is coursing its way just under the surface.
This marks a completely new stage of my life. Before, I slept alone every night, but I sure looked like someone who should be sleeping with someone. Nobody was with me, but damn if I didn't look like a woman who should be having great sex every night! Every once in a while, I would stand before a floor-length mirror in just my skivvies and smile, thinking of what I would love to have a lover doing with me.
But now when I do look in the mirror, I look from the breasts up.
It's just really difficult to accept that from now on until the day I die, there is so little hope of a relationship. If no one of interest to me was interested before, why in the hell would someone be interested now!
And it's not just the PD paraphernalia either. It's the insulin pump, shown here in the black case I can slip it into and then clip to my belt or the top of my skirt. Otherwise, I stuff it into a baby sock and nestle it in my underwear.
At least with the insulin pump, I could remove it if I didn't want a "date" to see it. The site is changed every three days anyway, so I could just remove the infusion site, the tubing, and the pump for the duration of the "date." My blood sugar would be a little high afterward, as I wouldn't be receiving the 20-times-an-hour mini-infusions of insulin, but I could correct for that by giving myself a bolus post-date.
But there's no removing the catheter. It's lodged into my mid-section and would require an extreme yank to free it. Just thinking of this gives me a shiver.
So all of this is why I wonder, Even if someone were interested in approaching me, however could he manage that?
Dialysis is Easy, Like Prison and War
I spoke with someone yesterday who closed the conversation with "I'm glad dialysis is easy." This is a classic case of confusing a good attitude with a good situation.
Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?
So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.
Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?
So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.
Decoration in the Lives of Others
What I am to write here is not a new idea. Truly, I have wondered about this for many years. It's just that I feel it quite acutely right now.
We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.
I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.
What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."
There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?
Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!
We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.
In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.
Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.
I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.
And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.
But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!
Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.
We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.
I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.
What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."
There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?
Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!
We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.
In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.
Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.
I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.
And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.
But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!
Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.
Thursday, February 19, 2009
Yet Another Bout with Death, late 2007
The following post was first published some time in late 2007:
Once again, I have been plucked from the hands of death. Not more than an hour ago, I was slipping over to “the other side,” but for the 200th or so time in my life, I was spared.
As an insulin-dependent diabetic, I often walk that line between life and death. Though elevated blood sugar wrecks long-term damage, such as heart and kidney failure, it is the low blood sugars that are the most worrisome. When my blood sugar dips, fuel is not getting to my body, and my brain shuts down too. My response varies greatly, from paranoia to an oppressive feeling that everything that is transpiring in the world is somehow my doing, my fault. When my son is with me during an insulin reaction, I often revert to the emotional wherewithal of a preschooler, whining that he is going to abandon me when he runs off to find some orange juice or chocolate to give my sugar a boost.
Sometimes I lose consciousness, as I did at Hof’s Hut a few years ago. I had taken my shot before walking the mile or so to the restaurant with my son—definitely not a smart idea. The place was packed, and so our meal was delayed. While waiting for the food, I dipped into insulin shock, becoming hostile when Aaron tried to get me to drink some orange juice, then collapsing into my bowl of soup. Aaron summoned paramedics, who gave me glucose intravenously, as I was unable to swallow. One clear sign of low blood sugar is my biting at orange juice while it spills out of my mouth, unable as I am to negotiate the simple act of swallowing liquids.
Sometimes low blood sugar hits me in the middle of the night. These are especially dangerous times, as I’m asleep and I live alone. So many times I have awoken to find my nightshirt, my sheets, and my pillows drenched in sweat, literally dripping in sweat. No, not perimenopausal drippings. Not even digging-a-trench-on-a-100-degree-day sweat. This is a sweat like no other. An adrenaline sweat. A this-could-be-my-last-moments-on-Earth kind of sweat. In one last ditch effort, my body is crying out for help, and its tears are this sweat. Wake up, Heidi! it’s screaming. Do something quick! There have been times when I’ve rolled back to sleep—not a good thing. Always, during these shadow moments when who I am is dissolving and I feel myself fading into another realm, something-I-know-not-what speaks up from inside me and shouts, Get something to eat! This aspect of self or of Self comes to the fore and takes charge. I stagger into the kitchen and find some juice and somehow get it into my mouth and down my throat. Once, during a middle-of-the-night plunge into darkness, I was so uncoordinated that I banged into walls, cutting my forehead and calves, and leaving a trail of blood on the carpet on my frantic trek to the refrigerator.
When I was pregnant with Aaron, my blood sugar once dropped so low that my then-husband came home from work to find me slumped against the living room wall, one eye staring upward, the other sunk downward at the carpet, unable to tell him my name. When the paramedics arrived and checked my blood sugar, it was 10, an insanely low level, as normal is between 70 and 140, and I begin feeling symptoms of low sugars at 65. Even though it was a hot summer day, I was shaking with cold. This was the first of five emergency-room visits during my pregnancy.
Last weekend, Aaron and I visited the South Coast Botanical Gardens. While walking the grounds, I began to slip into insulin shock, reverting to a scared, uncooperative two-year-old. After he somewhat revived me with one of the glucose tablets I keep in my purse and a slice of baklava I had squirreled away, held over from lunch, I marveled at the rock about 50 yards away. In my mind, I had been standing or sitting near that rock and had no conception of how I had walked from there to where I now stood. These are the space-time rifts I enter during insulin shock.
So, this morning was just such a brush with death in a long, long history—35 years to be exact—of brushes with death. I had gone downstairs to take out the garbage. In the courtyard I encountered Al, the manager. Every time I talk with him, he tells me of people he has threatened with bodily harm and of his Vietnam days. This time he went on about his bad-ass motorcycle-gang days in which he “didn’t kill no one, just bust up a bunch of bars and cars and took swings at a few cops.” After I had extricated myself from Al, I walked up the stairs to my apartment. Here I was given my first warning sign: I felt dizzy and had trouble walking.
I tried to write an article whose deadline is fast-approaching, but I couldn’t seem to get out the first word. I went to lie down—usually something I would consider shameful at 10 in the morning. I lay there, floating in and out of coherent thought, as a vague feeling of oppression descended upon me. Yet from some deep place within my soul emerged that saving voice: You need something to eat. I managed to push the covers off my legs and stumble into the kitchen, clutching the walls to steady me. I checked my blood sugar: 43. I looked in the fridge. Not much there. I began whimpering and whining, even though Aaron wasn’t there. I was becoming a small child and yet I knew I had to take care of myself—something the child definitely resented. Help me! Help me! I demanded like the scared little girl that I was. Please help me! I couldn’t find any juice or anything sweet besides a little bit of jam at the bottom of a jar. I spooned it out and wolfed it down. But I needed more. I grabbed a piece of bread and gnawed at it, crying and complaining like a frustrated child. The thought came to me that usually comes to me during these times: I’m dying. This is the last. Just lie down and pass over. But there, too, was that other voice, prodding me to eat something more, to pull through.
Because I am writing this, it is obvious that I did pull through. Once again. And this time, like all the other times, I said thank you afterwards. Thank you to that part of me that resisted the pull of death. Thank you to that voice deep within me, the voice of God (?), that wants me to pull through. Through these private, mostly solitary, bouts with mortality, I have come to know the divine in a way that few others can know. When all else is stripped away, when even the ground of my little self, my personality, is gone, something remains—life itself, calling to me to continue to live, again and again and again.
Once again, I have been plucked from the hands of death. Not more than an hour ago, I was slipping over to “the other side,” but for the 200th or so time in my life, I was spared.
As an insulin-dependent diabetic, I often walk that line between life and death. Though elevated blood sugar wrecks long-term damage, such as heart and kidney failure, it is the low blood sugars that are the most worrisome. When my blood sugar dips, fuel is not getting to my body, and my brain shuts down too. My response varies greatly, from paranoia to an oppressive feeling that everything that is transpiring in the world is somehow my doing, my fault. When my son is with me during an insulin reaction, I often revert to the emotional wherewithal of a preschooler, whining that he is going to abandon me when he runs off to find some orange juice or chocolate to give my sugar a boost.
Sometimes I lose consciousness, as I did at Hof’s Hut a few years ago. I had taken my shot before walking the mile or so to the restaurant with my son—definitely not a smart idea. The place was packed, and so our meal was delayed. While waiting for the food, I dipped into insulin shock, becoming hostile when Aaron tried to get me to drink some orange juice, then collapsing into my bowl of soup. Aaron summoned paramedics, who gave me glucose intravenously, as I was unable to swallow. One clear sign of low blood sugar is my biting at orange juice while it spills out of my mouth, unable as I am to negotiate the simple act of swallowing liquids.
Sometimes low blood sugar hits me in the middle of the night. These are especially dangerous times, as I’m asleep and I live alone. So many times I have awoken to find my nightshirt, my sheets, and my pillows drenched in sweat, literally dripping in sweat. No, not perimenopausal drippings. Not even digging-a-trench-on-a-100-degree-day sweat. This is a sweat like no other. An adrenaline sweat. A this-could-be-my-last-moments-on-Earth kind of sweat. In one last ditch effort, my body is crying out for help, and its tears are this sweat. Wake up, Heidi! it’s screaming. Do something quick! There have been times when I’ve rolled back to sleep—not a good thing. Always, during these shadow moments when who I am is dissolving and I feel myself fading into another realm, something-I-know-not-what speaks up from inside me and shouts, Get something to eat! This aspect of self or of Self comes to the fore and takes charge. I stagger into the kitchen and find some juice and somehow get it into my mouth and down my throat. Once, during a middle-of-the-night plunge into darkness, I was so uncoordinated that I banged into walls, cutting my forehead and calves, and leaving a trail of blood on the carpet on my frantic trek to the refrigerator.
When I was pregnant with Aaron, my blood sugar once dropped so low that my then-husband came home from work to find me slumped against the living room wall, one eye staring upward, the other sunk downward at the carpet, unable to tell him my name. When the paramedics arrived and checked my blood sugar, it was 10, an insanely low level, as normal is between 70 and 140, and I begin feeling symptoms of low sugars at 65. Even though it was a hot summer day, I was shaking with cold. This was the first of five emergency-room visits during my pregnancy.
Last weekend, Aaron and I visited the South Coast Botanical Gardens. While walking the grounds, I began to slip into insulin shock, reverting to a scared, uncooperative two-year-old. After he somewhat revived me with one of the glucose tablets I keep in my purse and a slice of baklava I had squirreled away, held over from lunch, I marveled at the rock about 50 yards away. In my mind, I had been standing or sitting near that rock and had no conception of how I had walked from there to where I now stood. These are the space-time rifts I enter during insulin shock.
So, this morning was just such a brush with death in a long, long history—35 years to be exact—of brushes with death. I had gone downstairs to take out the garbage. In the courtyard I encountered Al, the manager. Every time I talk with him, he tells me of people he has threatened with bodily harm and of his Vietnam days. This time he went on about his bad-ass motorcycle-gang days in which he “didn’t kill no one, just bust up a bunch of bars and cars and took swings at a few cops.” After I had extricated myself from Al, I walked up the stairs to my apartment. Here I was given my first warning sign: I felt dizzy and had trouble walking.
I tried to write an article whose deadline is fast-approaching, but I couldn’t seem to get out the first word. I went to lie down—usually something I would consider shameful at 10 in the morning. I lay there, floating in and out of coherent thought, as a vague feeling of oppression descended upon me. Yet from some deep place within my soul emerged that saving voice: You need something to eat. I managed to push the covers off my legs and stumble into the kitchen, clutching the walls to steady me. I checked my blood sugar: 43. I looked in the fridge. Not much there. I began whimpering and whining, even though Aaron wasn’t there. I was becoming a small child and yet I knew I had to take care of myself—something the child definitely resented. Help me! Help me! I demanded like the scared little girl that I was. Please help me! I couldn’t find any juice or anything sweet besides a little bit of jam at the bottom of a jar. I spooned it out and wolfed it down. But I needed more. I grabbed a piece of bread and gnawed at it, crying and complaining like a frustrated child. The thought came to me that usually comes to me during these times: I’m dying. This is the last. Just lie down and pass over. But there, too, was that other voice, prodding me to eat something more, to pull through.
Because I am writing this, it is obvious that I did pull through. Once again. And this time, like all the other times, I said thank you afterwards. Thank you to that part of me that resisted the pull of death. Thank you to that voice deep within me, the voice of God (?), that wants me to pull through. Through these private, mostly solitary, bouts with mortality, I have come to know the divine in a way that few others can know. When all else is stripped away, when even the ground of my little self, my personality, is gone, something remains—life itself, calling to me to continue to live, again and again and again.
Another Heart Attack, January 2008
The following post was written in late January 2008. I removed it from my blog, along with a few other health-challenges posts, thinking that it might work against me, should I ever apply for a job and someone spot this information online. Now that I am fairly certain I will not be applying for any jobs--chosing instead to freelance once again after I leave Cal State--I thought I'd make these posts public again.
On Thursday, some time on Thursday, I had another heart attack. Yes, I'm such a trooper with such a high tolerance for pain that I can't say exactly when it happened.
All day I had been having chest pain, but it was not bad enough to complain about. Occasionally, I would rub my chest, which always helps a bit, but I went on teaching and even at one point got on my soapbox to decry the loss of civil liberties and the dearth of presidential candidates who seem even remotely concerned that the First and Fourth Amendments to the Constitution are virtually null and void.
That evening I met Michelle, a former student, for dinner at Hof's Hut. By then, I was feeling pretty awful. My blood sugar was way off the scale, somewhere over 600, as my blood monitor doesn't register anything above that level, only flashes HIGH BLOOD GLUCOSE. I had changed my insertion site that morning, but I guess the pump wasn't delivering any insulin and maybe hadn't been delivering any all day. When the insulin pump works, it works great, but when it doesn't work, it really messes things up.
I really didn't feel like eating. I was extremely weak and tired and sick to my stomach. But Michelle was hungry, and I didn't want to be a spoil sport, so I ordered a dinner salad. I picked at it a bit, then things turned from bad to worse. I felt an immanent purge coming on, grabbed a few napkins, hastily excused myself, and managed to contain most of my barf in the napkins as I rushed to the ladies' room. Michelle followed.
She asked me if she could do anything. From my compromised position, kneeling before the bowl, I managed a chuckle. "I guess you've seen worse than this in the military," I said to a woman who served in Afghanistan. She admitted that she had.
Michelle offered to take me to the ER, but I thought what I was experiencing was merely high blood sugar, which produces ketones that act as a poison to the system and can cause vomiting.
Once home, I called Mary Kay, a very dedicated, call-me-any-time-of-the-day-or-night diabetic nurse. She said it was crucial that I drink plenty of fluids and try to keep them down. I also took massive doses of insulin via a syringe because the pump was obviously not doing its job.
Still my blood sugar remained high--587. I called Tom and asked him to bring over some sugar-free ginger ale. By the time he arrived, I was so weak I could hardly move. Time to go to the ER.
I kept telling the intake nurses that I needed an IV and something to drink, but all they did was give me test after test--EKG, urine, blood pressure, temperature. Finally, after almost three hours, they gave me an IV and I began to stabilize. It was only then that I found out that, because of the elevated level of the heart enzyme troponin in my blood, I must have had a heart attack.
I stayed in the hospital until Saturday evening. Right now, I'm feeling fine. I'm able to walk and make my bed and do everything I need to do. Once again, I experienced a medical drama, but, thankfully, once again, I bounced back quickly. Another lease on life, another chance. Thanks so much to all forces and beings who are watching over me.
On Thursday, some time on Thursday, I had another heart attack. Yes, I'm such a trooper with such a high tolerance for pain that I can't say exactly when it happened.
All day I had been having chest pain, but it was not bad enough to complain about. Occasionally, I would rub my chest, which always helps a bit, but I went on teaching and even at one point got on my soapbox to decry the loss of civil liberties and the dearth of presidential candidates who seem even remotely concerned that the First and Fourth Amendments to the Constitution are virtually null and void.
That evening I met Michelle, a former student, for dinner at Hof's Hut. By then, I was feeling pretty awful. My blood sugar was way off the scale, somewhere over 600, as my blood monitor doesn't register anything above that level, only flashes HIGH BLOOD GLUCOSE. I had changed my insertion site that morning, but I guess the pump wasn't delivering any insulin and maybe hadn't been delivering any all day. When the insulin pump works, it works great, but when it doesn't work, it really messes things up.
I really didn't feel like eating. I was extremely weak and tired and sick to my stomach. But Michelle was hungry, and I didn't want to be a spoil sport, so I ordered a dinner salad. I picked at it a bit, then things turned from bad to worse. I felt an immanent purge coming on, grabbed a few napkins, hastily excused myself, and managed to contain most of my barf in the napkins as I rushed to the ladies' room. Michelle followed.
She asked me if she could do anything. From my compromised position, kneeling before the bowl, I managed a chuckle. "I guess you've seen worse than this in the military," I said to a woman who served in Afghanistan. She admitted that she had.
Michelle offered to take me to the ER, but I thought what I was experiencing was merely high blood sugar, which produces ketones that act as a poison to the system and can cause vomiting.
Once home, I called Mary Kay, a very dedicated, call-me-any-time-of-the-day-or-night diabetic nurse. She said it was crucial that I drink plenty of fluids and try to keep them down. I also took massive doses of insulin via a syringe because the pump was obviously not doing its job.
Still my blood sugar remained high--587. I called Tom and asked him to bring over some sugar-free ginger ale. By the time he arrived, I was so weak I could hardly move. Time to go to the ER.
I kept telling the intake nurses that I needed an IV and something to drink, but all they did was give me test after test--EKG, urine, blood pressure, temperature. Finally, after almost three hours, they gave me an IV and I began to stabilize. It was only then that I found out that, because of the elevated level of the heart enzyme troponin in my blood, I must have had a heart attack.
I stayed in the hospital until Saturday evening. Right now, I'm feeling fine. I'm able to walk and make my bed and do everything I need to do. Once again, I experienced a medical drama, but, thankfully, once again, I bounced back quickly. Another lease on life, another chance. Thanks so much to all forces and beings who are watching over me.
Wednesday, February 18, 2009
More Pleasures
Here are some more pleasures in my life. As these are also things I'm thankful for, this can also be seen as a gratitude list, incomplete, of course. A work in progress.
* sunshine, definitely sunshine
* a smile from a stranger
* black velvet gloves that feel so good and keep my hands warm
* fresh flowers--what a treat!
* blueberries
* mangoes
* a sweet, juicy orange
* good writing
* National Public Radio
* holding a pillow against my chest as if it were my lover
* rubbing my legs against flannel sheets
* a meal with The Son
* a hug from The Son
* watching "The Wire" with The Son (We've rented the entire four seasons of episodes from Netflix.)
* gazing upon my cacti collection on my back porch
* acupuncture appointments, especially the acupressure massage Dr. Mai gives me after he removes the needles
* birdsong
* being able to walk, climb stairs, do housework, and get dressed without panting, without having cardiac symptoms--the pleasure of doing simple things effortlessly
* sunshine, definitely sunshine
* a smile from a stranger
* black velvet gloves that feel so good and keep my hands warm
* fresh flowers--what a treat!
* blueberries
* mangoes
* a sweet, juicy orange
* good writing
* National Public Radio
* holding a pillow against my chest as if it were my lover
* rubbing my legs against flannel sheets
* a meal with The Son
* a hug from The Son
* watching "The Wire" with The Son (We've rented the entire four seasons of episodes from Netflix.)
* gazing upon my cacti collection on my back porch
* acupuncture appointments, especially the acupressure massage Dr. Mai gives me after he removes the needles
* birdsong
* being able to walk, climb stairs, do housework, and get dressed without panting, without having cardiac symptoms--the pleasure of doing simple things effortlessly
The Pleasure of a Cup of Tea
Even as I wrote my last post, I knew that taking a shower is hardly my only pleasure. Not by a long shot.
Right now, I'm indulging in one of my favorite things: a cup of tea, preferably Earl Grey or English breakfast. This is the latter.
It's not just the tea itself, it's the sensual pleasure of holding the cup, the heat from which warms my often-chilly hands. It's also the tent I make with my hands over the cup. I then breathe into the tea and create a mini-sauna. Ah!
All this warmth makes me feel loved. It's a cozy feeling, a deep comfort, like I'm sure it must be to share a quilt with a lover, snuggling and rubbing tootsies and noses together. I've never had this experience, but I'm sure it must be wonderful. Placing a hot cup of tea against my cheek must be something like this cozy, homey, smiling-on-a-rainy day sort of love. Until that fairy tale comes true, a good cup of tea gives me the sensation of that tender sweetness.
Right now, I'm indulging in one of my favorite things: a cup of tea, preferably Earl Grey or English breakfast. This is the latter.
It's not just the tea itself, it's the sensual pleasure of holding the cup, the heat from which warms my often-chilly hands. It's also the tent I make with my hands over the cup. I then breathe into the tea and create a mini-sauna. Ah!
All this warmth makes me feel loved. It's a cozy feeling, a deep comfort, like I'm sure it must be to share a quilt with a lover, snuggling and rubbing tootsies and noses together. I've never had this experience, but I'm sure it must be wonderful. Placing a hot cup of tea against my cheek must be something like this cozy, homey, smiling-on-a-rainy day sort of love. Until that fairy tale comes true, a good cup of tea gives me the sensation of that tender sweetness.
My First Shower in Almost Three Weeks! Yippee
Yesterday, John, my PD training nurse, gave me the go-ahead to take a shower--my first since my surgery on Jan. 30.
In the weeks since surgery, I have washed my hair while kneeling before the bath tub or dunking my head with water poured from a cooking pot over the bathroom sink. Then I've sponge-bathed the rest of my body. This has been quite time-consuming, and I have had to allow for an hour and a half to shampoo, bathe, dress, and do all the tasks associated with dialysis clean-up and record-keeping each morning. Now, thank goodness, with a shower, I'll cut some of that time and effort.
But much more than the saved time and the increased convenience of a shower is the pleasure of the experience.
Taking a shower is one of the few sensual pleasures that is left to me.
* I don't smoke, take illegal drugs, or drink alcohol.
* My diet is restricted: I must avoid sweets, processed foods, dairy products, nuts, colas, and certain fruits and vegetables.
* Now that I'm on dialysis, travel is not completely impossible, but it will certainly no longer be spontaneous. (The supply company must be informed two months in advance of a domestic trip and at least three months in advance of an overseas trip, so that supplies can be delivered to my destination. And then there's all the surgical masks, cleaning supplies, towelettes, bleached towels, clamps, and other paraphenalia that I must pack. And beyond that, I have to be fairly certain that I'm conducting dialysis in a mold-free, clean space.)
* Intimacy, romance, companionship, and love seem even farther away than they have been during the rest of my life. I'm not even sure how a man would get physically close to me with all the tubing, tape, transfer set, and insulin pump that is around my mid-section.
So, taking a shower is one of the joys that is afforded me. I am so thankful to have a daily, hot shower back in my life!
In the weeks since surgery, I have washed my hair while kneeling before the bath tub or dunking my head with water poured from a cooking pot over the bathroom sink. Then I've sponge-bathed the rest of my body. This has been quite time-consuming, and I have had to allow for an hour and a half to shampoo, bathe, dress, and do all the tasks associated with dialysis clean-up and record-keeping each morning. Now, thank goodness, with a shower, I'll cut some of that time and effort.
But much more than the saved time and the increased convenience of a shower is the pleasure of the experience.
Taking a shower is one of the few sensual pleasures that is left to me.
* I don't smoke, take illegal drugs, or drink alcohol.
* My diet is restricted: I must avoid sweets, processed foods, dairy products, nuts, colas, and certain fruits and vegetables.
* Now that I'm on dialysis, travel is not completely impossible, but it will certainly no longer be spontaneous. (The supply company must be informed two months in advance of a domestic trip and at least three months in advance of an overseas trip, so that supplies can be delivered to my destination. And then there's all the surgical masks, cleaning supplies, towelettes, bleached towels, clamps, and other paraphenalia that I must pack. And beyond that, I have to be fairly certain that I'm conducting dialysis in a mold-free, clean space.)
* Intimacy, romance, companionship, and love seem even farther away than they have been during the rest of my life. I'm not even sure how a man would get physically close to me with all the tubing, tape, transfer set, and insulin pump that is around my mid-section.
So, taking a shower is one of the joys that is afforded me. I am so thankful to have a daily, hot shower back in my life!
Monday, February 16, 2009
John Updike Heard Me Read my Poetry
John Updike died on Jan. 27. I know this is old news, being that today is already Feb. 16. But what I have to write here is very old news, some 20 years old.
Back in the mid-1980s, when I was in my heyday of performance poetry, I was a featured reader at a venue on Broadway Avenue in Long Beach. As I recall, perhaps 40 people were present.
Halfway through my impassioned reading, a tall, thin man entered and stood at the back of the room, listening intently for a few minutes, smiling, and then quietly leaving. Damn, he looked familiar! But I was concentrating on my performance, giving it my all.
After I left the stage, my fellow poet and friend Don Gross told me that John Updike had popped in.
My brush with literary genius.
Back in the mid-1980s, when I was in my heyday of performance poetry, I was a featured reader at a venue on Broadway Avenue in Long Beach. As I recall, perhaps 40 people were present.
Halfway through my impassioned reading, a tall, thin man entered and stood at the back of the room, listening intently for a few minutes, smiling, and then quietly leaving. Damn, he looked familiar! But I was concentrating on my performance, giving it my all.
After I left the stage, my fellow poet and friend Don Gross told me that John Updike had popped in.
My brush with literary genius.
Friday, February 13, 2009
More Kindness
During peritoneal dialysis (PD) training last week, I was a bit distraught because my stomach had swelled on account of surgery and I couldn't zip up any of my skirts. I quite literally had nothing to wear except an elastic-waist black velvet skirt.
I moaned about this state of affairs to Marlene, the PD social worker, and Gina, the dietician. The next day, Marlene called me into her office to show me a half dozen skirts she had weened from her closet. She had gone through her things and picked out six very nice skirts for me--one wool, the others non-clingy polyesters that didn't reveal the lines of my tubing. They were beautiful! I tried them on, and all but one looked wonderful.
Gina later pulled me aside and gave me a black skirt.
I was so touched by the generosity of these two women.
Though my stomach swelling has subsided and though I have lost a lot of water weight, much of the clothes in my closet fits tightly and so the outlines of the tubing and transfer set show through. These six skirts helped me feel pretty again and increased my confidence. Such a blessing!
I moaned about this state of affairs to Marlene, the PD social worker, and Gina, the dietician. The next day, Marlene called me into her office to show me a half dozen skirts she had weened from her closet. She had gone through her things and picked out six very nice skirts for me--one wool, the others non-clingy polyesters that didn't reveal the lines of my tubing. They were beautiful! I tried them on, and all but one looked wonderful.
Gina later pulled me aside and gave me a black skirt.
I was so touched by the generosity of these two women.
Though my stomach swelling has subsided and though I have lost a lot of water weight, much of the clothes in my closet fits tightly and so the outlines of the tubing and transfer set show through. These six skirts helped me feel pretty again and increased my confidence. Such a blessing!
Thank You, Doctors
I took this photo in late June 2006 on my month-long solo camping trip up the coast and then inland to friend Araia's place in northeastern Washington state. I had gone berry picking with her friends. Afterward I took a walk through the orchard and felt as if I had entered a magical world of dappled light.
More than any lab test or clinical marker, this photo reveals the current state of my health.
It is as if I have been walking in a dark woods for a decade, struggling with one obstacle after another, and then all of a sudden, sunlight breaks through the branches and another, incredibly lovely world appears.
The path ahead is indistinct, but infused with a delicious magic, like the rain-soaked tree I beheld this afternoon--thousands of drops twinkling in a shaft of light, like Indra's net.
I have sent this message, via a handmade card with this photo, to my nephrologist, Dr. Michael Butman, closing with "Thank you so very much for all that you have done to make this opening possible. I am deeply grateful." And I will do the same for my cardiologist, Dr. Michael Phan. Both these men have shown great kindness and concern, and have spent extra time talking to me during office visits about my misgivings. When people bad-mouth Kaiser Permanente, they obviously have not experienced the quality care that these physicians have given me.
Thursday, February 12, 2009
I Have a New Heart!
After a decade or so of varying degrees of constant chest pressure and pain, I have been totally cardiac-symptom-free since beginning dialysis. This is nothing short of a miracle, and I am ecstatic!
After years of struggling with stairs, huffing and puffing after dressing in the morning, feeling exhausted from vacuuming or walking around the block, after years of this every day, day in and day out, and through the night as well, I walked a mile today. I even passed a young man on the sidewalk, left him in the dust. Then I topped it off by climbing 10 flights of stairs with ease.
As I told nephrologist Dr. Michael Butman this afternoon, "I haven't felt this good in 10 years. Well...except for a few really fantastic kisses. But then it wouldn't be fair to hold dialysis up to those standards, would it?"
He smiled and concurred, "It's only a machine, Heidi."
After years of struggling with stairs, huffing and puffing after dressing in the morning, feeling exhausted from vacuuming or walking around the block, after years of this every day, day in and day out, and through the night as well, I walked a mile today. I even passed a young man on the sidewalk, left him in the dust. Then I topped it off by climbing 10 flights of stairs with ease.
As I told nephrologist Dr. Michael Butman this afternoon, "I haven't felt this good in 10 years. Well...except for a few really fantastic kisses. But then it wouldn't be fair to hold dialysis up to those standards, would it?"
He smiled and concurred, "It's only a machine, Heidi."
Monday, February 09, 2009
The New Meaning of "Hook Up"
Strange how the term "hook up" has taken on a whole new meaning lately. In modern parlance, it is a rather crude way of saying that one has quite literally hooked up, put one's genitalia into another human being or vice versa. Dogs clamped together in the sex act.
I am now hooked up every night. But not with a sex partner. With my dialysis machine. It pumps fluid in and out of my body for 10 hours every night. Can any man do that? Hmmmm...I doubt it.
And it is not a casual hook-up. No, indeed. It is a life-and-death embrace, the stuff of true passion. At least as I've always envisioned it. Intense passion for me--and I haven't had any intense passion for almost a decade--entails a little hint of death, a bringing of two bodies to the abyss coupled with an explosion of light. The play of darkness and light, death and life, pain and pleasure. This is the stuff of the kind of hook-up that few people, I'm sad to say, have known. This is also the stuff of what I am experiencing, hooked up to a machine that pumps clean fluids in and extracts toxins, but also takes its toll as it robs my body of protein and electrolytes.
I don't have a valentine this Valentine's Day, as I have not had one for almost 30 years. Yes, 30 years without VD flowers and affection from a man with whom I am romantically entangled. None of that this year either, unless some miracle crosses my path. But I will be hooked up. You can bet on that.
I am now hooked up every night. But not with a sex partner. With my dialysis machine. It pumps fluid in and out of my body for 10 hours every night. Can any man do that? Hmmmm...I doubt it.
And it is not a casual hook-up. No, indeed. It is a life-and-death embrace, the stuff of true passion. At least as I've always envisioned it. Intense passion for me--and I haven't had any intense passion for almost a decade--entails a little hint of death, a bringing of two bodies to the abyss coupled with an explosion of light. The play of darkness and light, death and life, pain and pleasure. This is the stuff of the kind of hook-up that few people, I'm sad to say, have known. This is also the stuff of what I am experiencing, hooked up to a machine that pumps clean fluids in and extracts toxins, but also takes its toll as it robs my body of protein and electrolytes.
I don't have a valentine this Valentine's Day, as I have not had one for almost 30 years. Yes, 30 years without VD flowers and affection from a man with whom I am romantically entangled. None of that this year either, unless some miracle crosses my path. But I will be hooked up. You can bet on that.
Saturday, February 07, 2009
One in a Million, or Close Enough
In 2010, an estimated 129,000 Americans will be in end-stage kidney disease (ESKD), receiving or in need of dialysis. Of those, less than half will be undertaking peritoneal dialysis, opting instead for the more commonly known hemodialysis.
At the Kaiser Permanente facility at which I receive care, only about 130 patients are on PD. The nurse told me that in Southern California, there are no doubt thousands of PD patients.
Thousands may sound like a lot, but not in such a populous area.
Taking the 129,000 figure above, ESKD patients make up only .04 percent of the population, figuring a total U.S. population of 304 million. PD patients probably account for no more than .01 percent of the U.S. population, so I am one in 10,000.
If you also factor in coronary heart disease, at least two heart attacks, and juvenile-onset diabetes of 37 years, we're probably getting close to one in a million.
I always wanted to be one in a million, but I sure wish it was for something other than this.
At the Kaiser Permanente facility at which I receive care, only about 130 patients are on PD. The nurse told me that in Southern California, there are no doubt thousands of PD patients.
Thousands may sound like a lot, but not in such a populous area.
Taking the 129,000 figure above, ESKD patients make up only .04 percent of the population, figuring a total U.S. population of 304 million. PD patients probably account for no more than .01 percent of the U.S. population, so I am one in 10,000.
If you also factor in coronary heart disease, at least two heart attacks, and juvenile-onset diabetes of 37 years, we're probably getting close to one in a million.
I always wanted to be one in a million, but I sure wish it was for something other than this.
There Goes my Carbon Footprint!
For as long as I can remember, I have bought most everything I own from thrift stores and yard sales, reused instead of bought new, and recycled as if my life depended on it. What's more, I have lived in the same town in which I work, thereby saving lots of gas. In short, I have had a very small carbon footprint.
Until now.
Last night I hooked myself up for dialysis for the very first time. I received emergency dialysis in the hospital this week and in the dialysis training center, but this was the first time I did all the set-up and hook-up by myself without the supervision of a medical worker.
What a sack of garbage I now will generate every day! The plastic covering on two or three dialysate bags, the bags themselves, the six lines of tubing, the infusion set, the numerous paper towels and towelettes used to clean my hands, the surgical mask, tape, and the packaging for the anti-bacterial caps that cover the head of the end of the line from my body to where it connects to the tubing. All told, a trash bag full of non-reusable medical waste. Add to that the cardboard boxes--each one holding two dialysate bags. At least these can be recycled.
Until now.
Last night I hooked myself up for dialysis for the very first time. I received emergency dialysis in the hospital this week and in the dialysis training center, but this was the first time I did all the set-up and hook-up by myself without the supervision of a medical worker.
What a sack of garbage I now will generate every day! The plastic covering on two or three dialysate bags, the bags themselves, the six lines of tubing, the infusion set, the numerous paper towels and towelettes used to clean my hands, the surgical mask, tape, and the packaging for the anti-bacterial caps that cover the head of the end of the line from my body to where it connects to the tubing. All told, a trash bag full of non-reusable medical waste. Add to that the cardboard boxes--each one holding two dialysate bags. At least these can be recycled.
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