Rasputin Wishes You a Happy Halloween

Blood Sucked from my Neck--the Perfect Halloween Experience

My friend Chris drove me to the Kaiser facilty on Sunset Boulevard, across the street from the huge Scientology complex at L. Ron Hubbard Street--the humor did not escape us. I arrived in the waiting room around 7:30, and Rachel, the sweet, cute, attentive nurse who took care of me all day while I was in pre- and post-op, took me to the cardiac catherization unit at about 8. By 9 I was drugged and in the OR. Dr. Phan, who has been my cardiologist for many years, was my surgeon.

It's so funny how doctors relay important information to patients when they're drugged. Dr. Phan told me that, if a stent was placed, I would have to wait at least six months to a year to have a kidney transplant, since I would have to be on blood thinners--and so could not have surgery--for at least that long. No one had ever told me that before.

The angiogram went fine, unlike the one in November of 2006 when I was not sufficiently sedated. I was in a relalxed, half-sleep, half-waking state when Dr. Phan began with, "I have some bad new for you." He told me that the stent that had been placed in 2006 was occluded, that another stent could not be placed, and that he would consult with his colleagues about doing bypass.

In recovery, I drifted from tears to sleep and back again. I don't think anyone noticed that I had been crying. It's difficult for healthy people to understand this, but it's not the bad news that's so hard to take. I've been receiving bad news from doctors since I was 13 when I was diagnosed with Type I diabetes. Every time I go to the doctor, it's bad news or, at best, that the awful shape I'm in has not deteriorated any further, though I'm told, it surely will in time. So I am so incredibly used to bad news, though I always set it in my mind beforehand that this time is going to be an exception. Even yesterday morning, I kept affirming that my arteries would be clear and healthy, that the cardologists would be in awe and wonderment as to my vastly improved condition. I always hold to such visions and dreams. But then I am met with bad news. So I am so used to bad news. What makes me feel down and makes me cry is that 1) it seems as if all my affirmations and prayers and right thinking and positive attitude are for naught; and 2) there isn't a boyfriend or husband at my side, a life partner who holds my hand, kisses me on the cheek, looks into my eyes, and says, "You know I'll be with you, no matter what." That's what's hard. To always accept the bad news without anyone there with me.

Of course, embedded in this bad news is the unsaid bad news that bypass surgery makes me a less desirable transplant candidate. But I can't go there right now.

Around noon, I was taken to the acute hemodialysis unit. There the shunt that had been placed the day before in my neck was opened to tubing that led to and from an artificial kidney. My blood was removed, cleaned, and put back into my neck. I teased the nephrologist, Dr. Dewar, a very compassionate and sweet woman, that this was the perfect time to have blood sucked from my neck--the day before Halloween! She said I should go trick-or-treating as a vampire's victim.

The other patients in the hemodialysis unit were in really bad shape. Though they were all Latino, their skin tone was a far cry from a healthy brown, but rather a sallow yellow. They were listless and, in a few cases, emaciated. They were in-patients who needed dialysis while in the hospital, the worst of the worst kidney patients. This was also depressing, though it reaffirmed my decision to do peritoneal dialysis at home rather than go into a clinic for hemodialsyis.

So, that's the story. But I want to close with my gratitude. First, thanks to Helene and Bev, who called prior to my surgeries to wish me well. And thanks to those of you who kept me in your thoughts and in your prayers. Thanks to neighbors Janet and Dana for watching over Rasputin during these past two days, and thanks to Janet for the good hug last night Thanks to Ozzie, who drove me home from surgery on Thursday, teased me about my footwear, made me laugh, and called later to see how I was doing. Thanks to Chris for taking me to and from surgery yesterday--during the worst of the commuter crunch. Thanks to nurse Rachel, Dr. Dewan, and Ana, the orderly who wheelchaired me out of the facility, held my hand, and broke into a beautiful prayer that had me in tears. Thanks to Rasputin for his unconditional love and exuberance. And last, but certainly not least, thanks a million times over to Aaron, who took off a day of work to move his grandma into her new apartment yesterday and so could not take me to the hospital, who had a sandwich waiting for me when I got home, who washed the sink full of dirty dishes without being asked, who gave me two hugs, who didn't go out with friends on a Friday night but who stayed home and watched reruns of "The Office" with me on netflix, and who listened.

I couldn't do it without the support of my friends, son, and dog. And now that it looks like I'm going to have bypass surgery, I will need your support even more. Bypass is major surgery and requires about six weeks of recovery time. As Aaron is working three jobs, he'll be busy enough with taking care of my mom and handling the bills. I'm going to need help with cooking, cleaning, shopping, driving, and keeping my spirits up. (On the latter count, perhaps Othman and Mike could drop by a few times a week and just be their delightful, fun-loving selves!) Janet and Dana, who dearly love Rasputin and who are dearly loved in return, would be the best people to watch over the little guy. I will call for an appt. with Dr. Phan on Monday so that we can discuss the plan. Surgery probably won't happen this month, but I'm just giving you a head's up that I most likely will be needing some commitment of time and energy. Of course, the cardiologists may also decide that bypass surgery is not possible, allowing nature to take its course.

Thanks again to all.

Hugs,
Heidi

First of Two Surgeries

This morning I had the first of two surgeries scheduled for this week. A temporary shunt was placed in my neck--yes, my neck!--for a hemodialysis treatment tomorrow following the angiogram and heart stent placement. Tomorrow's procedures use a dye that is damaging to the kidneys, so it is important to rid my body of the dye as soon as possible following surgery, hence the need for hemodialysis, which takes the blood from the body, cleans it, and puts it back where it belongs. This can be done in two hours or so, compared to the peritoneal dialysis that I do every night, which takes between 8 1/2 and 10 1/2 hours.

Today's procedure went well, though it feels creepy to have two cuts in my neck artery. It's a bit sore, and I am reluctant to move my head too much. I'm also a bit tired and cold. Otherwise fine.

Night Hike Thrills Me No End

Yesterday evening I participated in a night hike led by Joel Robinson, chief naturalist and executive director of Naturalist for You. Back in 2001, Joel founded this nonprofit to connect people in So Cal with their wild areas.

My friend Chris and I drove to Silverado, the cute, Mendocino County-like town in one of the canyons near the trailhead. Silverado would be worth a trip in itself, as its hippie feel and pub in the center of town were intriguing, though we did not have time to check things out.

Joel led four attendees and one volunteer on a two-hour walk through privately owned land. Joel was once the naturalist for the Irvine Company's undeveloped holdings and has met its reclusive patriarch, Donald Bren. On one side of the road was Irvine Company land and on the other another family's large holding. Joel is a wealth of information about the local history (Indian massacre carried out by a man named Wolfskin, a resort from the '30s, the land swaps of the Irvine Company) and natural history (what to do if one encounters a mountain lion, the return of bears to the area, the solitary existence of male grizzlies). Joel was absolutely fantastic. And he leads four or five hikes a week--for free! Of course, a donation is always welcome.

Not only was this a beautiful, quiet, peaceful, informative evening, but I was so inspired by Joel, a young guy with a vision who is doing what he loves doing. I sure want to take more of his hikes, especially the one in the spring that he really talked up--a seven-mile trek up a stream bed to a waterfall that disappears behind some rocks and then emerges from a cave. Joel said its one of the most beautiful spots in So Cal.

Besides all these opportunities for exploration with Naturalist for You, Joel also clued me into the Irvine Ranch Wildlands and Parks tours, led by naturalists on the tens of thousands of undeveloped land that the Irvine Company still owns.

So wonderful to explore places so close to home that I never knew existed. So much fun to be out walking around in the beauty that surrounds me.

Poem Written in Nova Scotia

I am not exactly thrilled with this poem. It has its moments, but it's not my best. But here it is nonetheless.




A Year Ago

By Heidi Nye

A year ago I’d planned to leave my So Cal job,
live in my Nova Scotia cabin six months a year,
travel about the U.S. the other six,
sleep in the back of my truck,
save thousands in rent and utilities,
camp and hike and swim,
explore the back roads and little towns of America,
then head north for another six months,
repeat this cycle again and again,
stopping only for true love or death.
I’d make a living as I had in the summers of ‘05 and ‘06,
conducting interviews via cell phone,
using Internet connections and desk space in public libraries
to research, write, and e-mail articles
for trade journals, lifestyle magazines, and clients I‘d picked up along the way.

Perhaps I’d take an odd job here and there:
a waitress gig in Salt Lake,
a berry-picker season in eastern Washington,
a night-watchman month in Tennessee.

Everywhere I’d go, strangers would give me hugs,
keep me in their prayers,
invite me over for coffee or dinner,
let me use their backyards to set up camp
or their canoes for evening paddles on the lake.



Then, eight months ago, I was given a choice: dialysis or die.
I knew this meant the end of my wandering-Taoist dream,
hooked up as I would be 10 ½ hours in 24
to a machine that chugs and glugs, slurps and burps, belches and farts,
destroying the peace of my bedroom,
my sanctuary turned into a warehouse,
boxes squirreled under the bed, behind the file cabinet,
walls of cardboard halfway to the ceiling.

Thirty boxes every two weeks, I was told.
I’d have to rent a U-Haul and a driver
to tag behind me.
Surely not what I‘d had in mind.

I’d envisioned respite from the heaviness of this planet,
this dense realm in which I’ve been placed.
A lighter, freer way of being.
Instead, I’m now more encumbered than I ever imagined possible.

But when I’m quiet and apprehend the force that emanates
from every living thing (rocks, dead wood, and sunshine included),
I recall flight and weightlessness,
a place where bodies of light merge with one another,
each vibrating molecule of one field passing through the vibrating molecules of the other,
like scrambled transporter beams on the Starship Enterprise,
but in a good way.

The demands of surgical masks, insertion sites, sterile bandages,
aseptic techniques, tubing, exit-site care, blood-sugar tests,
meds, patient record-keeping, clinic visits,
tape, tape, and ever more tape too often cloud my mood,
and I make the mistake of thinking this is all there is,
all there will ever be.

It’s then I weep, shaking my fist toward heaven,
where I suspect Archangel Michael is hanging out,
doing his damnedest to avoid me.
The toughest of tough guys, he can take anything I can dish out.

“I am so tired of all this!” I rail at him.
“I’ve failed so miserably at my assignment.
I’m so very sorry.
So very, very sorry.
Please let me come home.”

He stands tall and resilient as ever, too far away for me to see.
But his message is clear enough: There’s no back-out clause in my contract.
And I must live up to his words to me, now almost a decade old:
“The strength that you see within me
is there inside of you.”


Aug. 21, 2009
Wrights Lake, Nova Scotia

Dialysis Has Given Me a New Heart

I wrote the following for the Renal Support Network's annual essay contest. This year's theme was "What Helps Me Lead a Joyful Life in Spite of Kidney Disease." Winners were announced Oct. 1, and winning essays can be read at kidneytimes.com.




Dialysis has given me a new heart, and I am using it to its full potential.

During the decade prior to beginning peritoneal dialysis on Feb. 2 of this year, I was struggling. There were many days when I wondered if this would be my last. Getting dressed or making my bed exhausted me. I would pause before attempting a few stairs, saying under my breath in a mind-over-matter mantra, “It is easy for me to climb these stairs. It is easy for me to climb these stairs.” I’d do the same when walking from my apartment to my van or from my van to my office: “It is easy for me to walk this distance,” I would assure myself. “It is easy for me to walk this distance,” though I would have to stop every few yards and catch my breath.

I had reprieves during which I was asymptomatic, but these were short-lived. For years I slept in a recliner in the living room, since lying prone or on my side put too much pressure on my heart. I was frequently hospitalized for fluid on the lungs, fluid overload, or when I’d gone out of whack in the other direction, dehydration, which would also tax my ticker. Compounding these challenges were severe anemia, which required three blood transfusions; juvenile-onset diabetes; and two heart attacks. My medical emergencies and heart-stent surgery conveniently occurred on the weekends or during vacation, so very few friends or coworkers knew I was anything but perfectly health. And as much as possible, I spared my son from too much information. I wanted the world to see me as strong and vibrant, and for the most part it did.

Through all this, I continued to work as an adjunct journalism professor and as a freelance writer and editor. In addition, I also spent long hours at spas and chiropractor offices as a massage therapist. Attending to my private clients was often at the upper limits of my physical ability, especially carrying the 45-pound massage table and 20-pound bag of gear up and down steps into their homes.

Last December I was told I had two choices: dialysis or death. I seriously entertained the latter course, knowing that I wasn’t interested in being hooked up to a machine that would simply prolong my life and not give me any respite from the ordeals of the last decade. In the end, I decided on peritoneal dialysis, as it promised the most mobility, autonomy, and freedom. I had spent the summers of 2005 and 2006 exploring the back roads of the U.S. and Canada, living out of my van, and backpacking through Malaysia and Thailand before that. These are the kind of adventures I still aspired to have. With PD, I was told, I would not have to confine myself to large urban areas with hemodialysis centers. If I wanted, I could camp 50 miles from the nearest dirt town in the desert, far removed from electricity and running water, and still perform manual exchanges, provided I maintained the aseptic techniques I had been taught. This sounded like the program for me.

So on Jan. 30, I underwent surgery for the placement of a catheter into my abdomen. Because I had put off dialysis for so long, I had to begin PD right away with no time for the incision to heal. Almost immediately I began to feel so much better. Not only could I walk across the room without getting winded, I could walk for two hours without stopping and without chest pain. I can now bound up stairs like someone half my age. And I can dance the night away at my salsa class. As I told my nephrologist, “Except for a few really fantastic kisses, I haven’t felt this good in 10 years!”

So, when I think of what makes me live a joyful life in spite of kidney disease, I have to say that dialysis has given me the opportunity to create my own joy. Prior to PD, every waking moment seemed as if it could be my last, and this put a tremendous drain on my body, my mind, and my spirit. Now, I’m walking for hours and dancing up a storm. I am so incredibly grateful, filled with joy.

Tape Travails

When healthy people think of chronic diseases, they think of them in the most cursory manner. When encountering a Type I diabetic, they think insulin injections. When meeting a heart patient, they think cardiac arrest. When considering the lot of a dialysis patient, they think of being hooked up to a machine. But every one of these conditions is so much more than this. And it is often the thousands of inconveniences and mishaps that go beyond this brushstroke approach to disease that cause the patient the most anguish and that can sometimes lead to her decline or demise.

For me, the current challenge is tape. That's right, tape. Since the beginning of July, when I first developed an allergic reaction to the tape I was using to hold the gauze around my exit site in place, I have had one difficulty upon another in regards to tape or the lack thereof.

Initially, when I first started taking care of my exit site in the middle of February, after the surgical dressing had been removed, I used paper tape. At first, it did a decent job of holding the gauze pads in place around the tubing that projects from my abdomen. But then a shift occurred, and the tape no longer held. The tape would come off during the day or at least become loose. The gauze would slip, exposing the exit site to the air--definitely not a good thing, since this provided a direct path for infection to enter my interior.

So I switched to plastic tape, which was much more secure. But then my body developed a reaction to the plastic, and the skin around my exit site became red and itchy. When I scratched, the skin quickly became more irritated and bled. This, of course, provided more inroads for infection, and I developed what is called a tube infection--germs in the tubing but not yet in the peritoneum. I was given the antibiotic ciprofloxacin, better known as cipro, which really did a number on me: three paramedic visits and hospital stays because of severe vertigo, skyrocketing blood pressure, and uncontrollable vomiting. Add to this depression and unprovoked weeping, and I have put cipro on my list of evil drugs to be avoided at all costs. My nephrologist said that, if I were to get an infection again, he'd have to hospitalize me with intravenously supplied antibiotics if I didn't want to take cipro. Though I dislike hospital stays and really dislike IVs, I said that would be much preferrable to cipro.

I discontinued use of the plastic tape and went back to paper tape. But now I had to apply Vitamin A&D ointment to the abraded areas, which gave the tape even less traction. Placing tape on top of ointment didn't work, so I tried to extended the gauze-padded area so that the tape adhered to non-irritated skin. This meant using a lot of tape--several feet--because one layer did not adhere, so I put tape on top of tape on top of tape. And often the whole thing slipped anyways, exposing the exit site to the air or my clothes. By this time, gauze and tape were covering three-quarters of my abdomen, from my left hip bone to three inches right of my belly button. What's more, the previously non-irritated spots then developed an irritation to the tape, increasing the area that needed to be treated with the ointment and avoided by tape.

Add to this, the hydrogen peroxide, which is to be applied after washing with antibacterial soap and drying the skin around the exit site. Hydrogen peroxide, though, irritated the already sensitive skin. So what to do? Skip the hydrogen peroxide and forego a means to prevent infection? Or use the hydrogen peroxide and irritate the skin, prompting more discomfort and scratching, and thereby encouraging an infection? I decided on the former course of action.

About a month ago, I started experimenting with tubular net bandages--large sock-like bandages that can be cut to any width. (Shown here is an arm with gauze pads and tubular net bandaging, but just imagine the same around my mid-section.) Think of them as midriff tops, only for my abdomen. I initially cut them too narrow, and the bandages bunched up, exposing the gauze, which then slipped down and exposed the exit site. Now I'm cutting the bandages about a foot wide so that they cover my entire abdomen and then some. My thinking was that, if the net bandage is tight enough, it will hold the gauze in place, and I won't have to use tape. This was the thinking at least. Things didn't quite work out that way. With all the stretching, bending at the waist, reaching, and just walking that I do every day, the tubular bandaging moves. I have tried to tuck its top side into the PD belt and its bottom side into my underwear, and this helps, but it still wiggles out of place. And with this wiggling, the gauze slips. So I am back to using tape, even with the tubular bandage, though not as much as I do without it.

The latest challenge is the irritation from the bleach that I use to wash the tubular bandages. I was only given so much bandaging, and since I have to change the dressing every day--on hot days, more than once a day--I ran out of tubular bandaging. So I washed the stips in bleach, as I do the towels I use during hook-up and capping-off. I'll have to ask the clinic for enough bandaging to be able to throw a used tubular strip away every day. Sometimes unusual items like these are in short supply, so I'll have to see.

This morning, while preparing to take a shower, I saw that the bottom side of my exit site, the side under the tubing, is red and sore. Definitely not a good sign. If this doesn't clear, I'll have to visit the clinic and have a nurse take a sample from my catheter. And if it is an infection, I guess I'll be checking into the hospital for a round of IV-fed antibiotics.

Dead Peasants Insurance

"Capitalism: A Love Story" is vintage Michael Moore: poignant interviews with the downtrodden, grandstanding with bullhorns in front of corporate headquarters, and vain attempts to speak with the captains of industry. In this film, he also takes on the co-opting of Jesus (recasting him as the poster child for greed) and Dead Peasants insurance--large corporations like Bank of America, Wal-Mart, and Citigroup that buy hefty life insurance policies on their sickest employees in hopes that they'll die as soon as possible. The name itself tells you how corporations feel about you and me.

Though Moore and the lawyer investigating Dead Peasants insurance did not imply this, it is my theory that this travesty is possible because of the sharing of information between government agencies and corporations. My concern had always been that corporations would use health records to exclude persons with medical challenges from the workforce, creating an unemployed underclass of people with pre-existing conditions. But just the opposite seems to be the case. Medical information is used in the hiring process: The sicker you are, the more valuable you are to the company--dead, that is.

And all this is made possible through the Orwellian-named U.S. Patriot Act, which allows the government to collect, access, and share all kinds of info about you. The same Patriot Act that Obama said he would work to overturn. (If you doubt this, read the entire Orwellian-named Privacy Policy the next time you visit a doctor for the first time. This is one of the documents you have to sign before receiving care.)

That brings me to my one big disappointment with Moore's film: his conviction that the election of Obama would issue in a new era of reform, of taking our country back from its corporate masters. Well, that certainly has not been the case, has it?

It's All How You Look at It

One of the most beautiful things in life is having an ah-ha moment when you see something from someone else's perspective. Well, at least that's how I feel. A lot of other people certainly feel differently, as wars have been waged over disagreement with others' perspectives. But I love these shifts of viewpoint, these novel ways of thinking about things that perhaps I would have never considered otherwise. I've had a few of these moments lately. Let me share three.



Sam is one of my favorite men of all time. He's witty, he's extremely intelligent, he has a devilish glint in his Paul Newman-blue eyes, he beats me by a hundred points or more every time we play Scrabble, and he always tells me how good I look. Sam is an absolute delight at 90 years old.

Someone must have told Sam that I was on dialysis. He asked me how I was, and we chatted a bit. Then he closed the conversation with, "Well, new horizons are opening to you." I smiled and said that was an unusual way of looking at it.

I had always thought of "new horizons" as an expression of something positive in someone's life--graduation from college, a new locale, a new job, marriage, the birth of a child. I had never thought of dialysis, or any health challenge, as a new horizon, but it certainly is. Just like the positive ventures I listed, dialysis gives me a perspective on life that had been denied me previously. People treat me in a different way than they did before, just as they treat someone who graduates from college, moves away from a familiar place, lands a new job, gets hitched, or brings another human being into the world in a different way. And I see my life differently than I had before, just as college grads, people in an unfamiliar setting, new guys or gals in the office, newlyweds, and young parents see life differently than they had previously.

Another perspective shift was prompted by something my friend Heather said. She was complaining about how people are always asking her when she's going to get married and why she isn't married yet. She said she finds this annoying. I said that she should think of this as a compliment. Though years ago, people used to ask me this question, it's been a long, long time since anyone has. They no longer consider me in the running. Since people are asking Heather this question, they still consider her worthy of marriage, someone who deserves to be married, who has every right to expect to be married someday. They no longer think this about me, especially now since dialysis.

This feeling of being outside of the realm of potential romance was brought home very clearly in another recent conversation. I was talking with a friend and her friend. The latter asked how I was doing with dialysis. I said that emotionally things had been difficult, but that physically I was feeling great. She then brought up the story of a friend of hers who had married a man with a colostomy--not that dialysis has anything to do with a colostomy, but I guess she figured it was on the same level of unattractiveness as dialysis. She said they were working around it and seemed to be happy. I said, "Yes, but he's a man. I'm a woman." The two of them nodded, knowing as all women know, that women will accept men with challenges that men would not accept in a woman.

To bring things full circle, I was at my mother's assisted living facility yesterday and talked with Sam. He said that he had met a female volunteer whose number he wanted from the office staff. He said he hadn't felt this way about a woman since, well, he'd turned 90! What a funny guy! So Sam is still thinking about courting members of the opposite sex, so maybe there's hope for me. It's possible that somewhere in the world there is a man who could love me for the treasure I am and not be dissuaded in the least by dialysis. It's possible. Thanks to Sam for another perspective.