Hooking Up

Every night I hook up for 10 ½ hours,

not with a supernaturally virile man

but a dialysis machine.

All night long it grunts, groans, and moans,

pushing clean fluids into me,

sucking dirty ones out.



Like an ideal man in some fantasy relationship,

my dialysis machine sustains me,

cleanses me, gives me another day of life.

Of course, it’s a life without hope

of romance, relationship, passion, or sex,

since every guy I’ve told so far

has immediately shunned me,

without even a good-bye call or first kiss.



All day long, I carry reminders of these hook-ups:

a foot of tubing that issues from the hole in my belly

and a penis-like transfer set by which I attach to the machine’s tubes.

Each morning after I shower and change the dressing,

I place the transfer set in a baby sock,

wrap the sock with a ponytail tie,

then slip all this inside my panties,

hiding the evidence under my clothes.

All day long, this artificial penis

rubs against my crotch,

the closest I ever get now

to what everyone else calls a hook-up.

Waiting for Test Results

I spoke with Cindy yesterday. She sent the blood test to UCLA. Now we just have to wait two to three weeks for the results. If she is a match, she'll then fly to UCLA for tests to see if she is sufficiently healthy to donate.It's always a waiting game with the transplant process.

Cindy's Veins

Last Monday, Cindy went for the blood test to see if she and I are compatible. Her vein collapsed, so she had to let it heal for a week. Yesterday she was supposed to have repeated the test.

After the blood is sent to UCLA, it will take two to three weeks before we hear whether we're a match. So by Thanksgiving we should know. A "yes" answer would cetainly be something to be thankful for.

I Went Camping Anyway

About 12 hours after I wrote the post "Best Not to Travel Alone" (Sept. 13), I did. Yes, that was the day after I had had a paramedic visit.

I needed to see a client near Sacramento, and a last-minute flight on Jet Blue was something like $300, so I opted to drive. I headed up the coast with Rasputin. We overnighted at the campground at Pfeiffer Big Sur State Park.

Because I had no electricity, I had to perform four manual exchanges of dialysis solution every day. This was quite a chore. At approximately an hour apiece, this consumed a good chunk of my time. I sat inside the truck and placed the empty dialysis bag on the floor, then let the solution that had been inside my tummy drain out into the bag. I attached the dialysis solution bag to the clip on the sun visor so that the solution could drain into me. I maintained the hygience standards that I do at home, cleaning beforehand with Lysol, scrubbing my hands with bacterial soap and antiseptic lotion, and wearing a surgical mask. What's remarkable to me is that I was always able to have some privacy.

The second day I gave a call to Sharon, the first friend I made when moving to So Cal in 1981. Decades ago Sharon moved to Northern California, and when I was making the 600-and-some-mile commute from Huntington Harbor to Point Arena (1996-2000), I would often spend the night at Sharon's in Mountain View. She has since married, moved to Santa Cruz, and had a baby, who is now 7 years old. I haven't seen Sharon for about a decade, but I gave her a call anyway, on the off chance that she might be free for coffee.

Instead, Sharon invited me for dinner and to spend the night. Pictured above is Rasputin next to Sharon's dog, Pasty Noodle the Golden Doodle. Guess who named him! You got it--Sharon and Peter's wonderful daughter, Chloe.

Really wonderful to see Sharon again. We were so comfortable, as if we had been in touch throughout this decade. I don't think there are very many people with whom I could just pick up again like that. Sharon, Peter, and Chloe will be visiting family for a week in So Cal around Thanksgiving. Sure hope to see them then.

Sure Would be Nice

Just returned from the grocery store, where I stood behind a man who complimented me on a purple and lavendar scarf a massage client had knit for me. He was in his late 40s, decent-looking, and seemed to be a tradesman of some sort. He said the scarf was "beautiful" and that his wife had some flowers that reminded him of it.

The interchange was so sincere and kind that I couldn't help but think, "Wow, it sure would be nice to have a man like that in my life. A sweetie who would say nice things to me now and again. What must that be like?"

For the most part, I do a damn good job of forgetting that this huge part of my life is missing, but once in a while, like this afternoon in the checkout line, it creeps in and I wonder, "Will I ever know what a good relationship is? Will I ever have that experience of love, tenderness, and companionship in this life?"

Food Under Attack

I know it's hard to believe for those of you out there who think that, at worst, the government is inefficient and incompetent, but wake up, folks, there are two bills facing Congress that would make it illegal to have a home garden, belong to an organic food coop, or in any other way subvert the interests of big agra.

Almost two decades ago, my ex-British secret service buddy, Brian Desborough, told me that one of the aims of the corporate-government collusion was to control the food supply because everyone needs to eat. If you can completely control food, you can completely control the populace. Of course, then you can add things to the food to pacify or otherwise manipulate people. Well, that Orwellian age is upon us.

A July police raid in Venice, California--that's right with guns drawn as if it were a drug bust--on an organic, raw food store is a case in point of what is to come if big business and those senators and congressional reps who prostitute themselves to big business have their way. To watch the surveillance camera video of this bust, see the Los Angeles Times.

I got the brilliant idea that one way to fight the corporate takeover of our food supply is to prosecute corporations under the provision of the so-called Patriot Act that, in part, defines a terrorist as someone who "disrupts commerce." This provision has been used against animal rights, environmental, and peace activists, labeling them terrorists for exercising their constitutional right to protest. Why not turn the tables and use the Patriot Act against corporations that are disrupting commerce at raw food stores and organic food coops! And against the evil Monsanto, which has been strong-arming farmers into buying its genetically modified seeds and running them out of business if they attempt to save their seed from year to year.

UCLA Gave Its Go-Ahead

I heard from Cindy. UCLA has given its go-ahead on the transplant. This is such good news.

111 Outside, 130 in my Bedroom

The heat is ungodly. Only one ceiling fan off the kitchen. The one in the living room has not been working for week, though I've been promised a new one to be installed tomorrow. The temperature inside my apartment is in the 120s, but my bedroom is even higher.

Because of the cleanliness that must be maintained with peritoneal dialysis, I have to keep my windows closed at all times, not use the ceiling fan because it stirs up dust and dirt, and keep the door closed. Oh, my god, does that make for a hot box! Imagine sleeping inside an oven.

When I have asked the PD nurses about this situation, they have just repeated the training manual: Keep the windows and door closed, don't use the ceiling fan or A/C (the latter of which I don't have). They simply cannot think outside the box. I ask them if it would be preferable if I die of heat exhaustion. They just go back to repeating the manual. UGH!

No News

Yesterday was to have been the day that the UCLA panel was to have made its decision regarding Cindy's eligibility. I expected to receive word from Cindy, but I have not heard anything. This week I sent her two emails and a Facebook message and left two voice messages.

When Janet, my next-door neighbor, was my potential donor ,we talked every day during our walks with our dogs. When either of us received info from UCLA, we would tell each other about it that day. And when Janet and I were working on a paired donation with Bob and Maria, I spoke with or emailed Bob many times a week. I have not received emails from Cindy for a month or so and have only spoken with her twice on the phone, the last time a week ago. Both times I have, she has been very enthusiastic about the transplant; she says, "where there's a will, there's a way"; and she gives me every indication that she is 100% on board. She strikes me as a compassionate, hardworking, thoughtful woman who wants to give through her work and through her everyday living.

I understand that she may not have time for a phone conversation, but a short email that said "UCLA gave a go-ahead" or "I spoke with my brother, and I'm going to wait to give my kidney to him when the time comes" would be fine too. If Cindy has reconsidered, I'd like to know so I can pursue some other avenue, and if she is moving forward with UCLA, I'd sure like to know that too. I'd like to be in the loop.

The UCLA coordinator won't talk with me about what's going on because her ethical and legal directive is to protect the rights of the donor. And the coordinator won't tell Janet anything about Cindy's status because that is a privacy issue. The system is designed to protect the donor, as it should be. Any information I get has to come from Cindy.

I'm sure she's busy as she works full-time, is studying to be an RN, and is in a relationship, any one of which is time-consuming. I'll wait a day or so and then try to contact her again. And in the meantime, I just have to let the whole thing slip out of my mind. What is going to happen is going to happen, with or without me thinking about it.

Hopes and Hurdles in the Transplant Process

I spoke with Cindy, the young woman in Phoenix who is interested in donating a kidney. She sent her initial paperwork to UCLA and received a call from Jen, one of the transplant coordinators, the next day, so things are moving in the right direction.

Jen is concerned that Cindy is only 26, and the minimum age for living donors, at least at UCLA, is 25. Since Cindy is so young, she has not established medical history as has someone who is older than her, i.e., very little has gone awry in her physical makeup. Therefore, UCLA has to look at her family's medical history rather than concentrating on her own. Since her mother and brother both have hypertension, she is more likely to develop hypertension in the future than someone her age with no family history of hypertension.

Because of her age, her friend-of-a-friend connection with me, and her family history of hypertension, her case must go before a panel that meets tomorrow. Cindy told me that they should have a decision before the week's end and that Jen has promised her a call by this Friday.

Jen also suggested that Cindy talk with her brother, who received a kidney from their sister 15 years ago. Fifteen years is the average life span of a living-donor kidney, and though the brother is doing well now, he may need another kidney in the future. Jen wondered if Cindy would rather wait in the wings for her brother's need to manifest than give her kidney to a stranger. For some reason, I hadn't thought of this before Cindy mentioned it, but I can certainly understand how that would be a big concern for her.

So as of this writing, I am thankful that things are progressing in the right direction, but as is my m.o. with everything that is possible in this life, it is best not to be attached to a particular outcome. I sure hope Cindy is able and willing to donate to me, but if the panel rules against her or if her brother wants her to save her kidney for him, I will avoid debilitating disappointment and discouragement by not being too wedded to these outcomes. In fact, I spend very little thought time with possible outcomes. I am clear about what I want, but then I let go of the thought and let the universe work its magic.

As I told Cindy during our last phone conversation, I am so thankful for her stepping forward. Just the fact that she has done that, that she sincerly wants to donate to me, is a great gift. To think that a stranger would want to save my life--that is truly remarkable. If that does not happen for one reason or another, that in itself is still such a wonderful thing, that a stranger would feel compassion for me and want to help. Wow!

What a Joy to See Gerald Locklin Again!

About 30 years ago, I was a student in Gerald Locklin's poetry-writing class at Cal State Long Beach. He encouraged me to attend readings throughout Southern California and to never give up writing. He and I read together at many venues, including the Anti-Club and Club Fuck with Dave Alvin of the Blasters.

Never giving up writing has often meant attempting to earn a living as a journalist and an editor, not as a poet and short-story writer, but I have always continued to write.

Years ago Aaron first told me that he sometimes saw Ger at It's a Grind Coffeehouse near his dad's house. Each time Aaron told me this, I asked him to please give Ger my number the next time he saw him.

Then on Saturday morning, I mentioned over breakfast that it would sure be nice to see Gerry again. A few hours later, I checked my email and saw an invitation from Open Bookstore a few blocks away for a poetry reading Gerald Locklin would be giving that night. What synchronicity!

I dressed up and went over. Gerry recognized me immediately and we spoke a little bit before and after his reading. I laughed harder than anyone else at his funny, earthy poems and beamed to beat the sun at his poems that offered insights into classical works of art. Ger runs the gamut.

I told Ger how much it had meant to me, all these many years ago, when my then-husband and I had attended one of his readings in Echo Park. When he saw me in the audience, he introduced me, giving up some of his time so that I could read. I told him that just thinking of the kindness and encouragement he showed me in this simple act gets me choked up. One of the nicest things anyone has ever done for me.

His most recent book, "Modest Aspirations," is a collaboration between him and short-story writer Beth Wilson of Oklahoma. Back in the early '90s, Gerry had taught a class at the University of Oklahoma, and Beth had gone up to him and said she wanted to be a writer and that she wanted him to tell her everything she needed to know. This assertiveness impressed Gerry, and so they stayed in touch, primarily via email, him attempting to help her as much as possible.

I was touched by this beautiful story, but also a bit ashamed. Gerry had believed in me as a poet, and I might have been his first Beth Wilson, but I put poetry on the back burner. Of course, I've continued to write poetry, and I've got a collection of 20 short stories that I'd love to see published, but I have not made a full-out effort to see my work in book form.

Yesterday I emailed Gerry, telling him that I sure would appreciate him pointing me in the right direction. I wrote that my creative life seems to echo my love life: "I look at my work, and I know it's very good and that I have a distinctive voice, but it does not attract the attention of people who are in the position to publish it, just as I take inventory of myself as a woman and behold an intelligent, sexy, good-looking, trim, playful, fun-loving, humorous, generous, loving gal, but that somehow is not what men are looking for."

I sent him three short stories and asked for his advice as to where to send them. I really would love for my work to get out into the world, to touch more people than it has been able to do thus far. I would really like to see that in the time I have left. Perhaps Ger will respond, but I told him that if he is not so inclined to please put me on his email list because I'd love to see him perform again. What a treat!

Viva Las Vegas--For Somebody Else

I have long had a snobby attitude toward Las Vegas, so when a great deal came up for a four-day, three-night vacation at the MGM Grand, I grabbed it.

I always remember the phrase "contempt prior to investigation" from the AA meetings I attended with Mike. I had been doing just that, so I set out to investigate and to see if my contempt was justified.

The continual barrage of lights, sound, movement, and commercialism was overwhelming. Even poolside, where one would expect to relax, quiet was denied, as pounding pop pervaded the air.

Aaron and I did a lot of walking. We visited quite a few of the casinos, so that I could see "what everyone is talking about." We went to Freemont Street for the nighttime overhead extravaganza of some half million lights.

Over lunch one day, I wondered if people really like this or if it's just a lot of group think, that they've been told that Vegas is where it's at. Or maybe it's just that they don't know anything else.

Despite what the ads tell you, Vegas is one of the safest vacation experiences around. Food is never more than a hundred yards away. You're protected from the heat by excessive A/C. It's easy to find a place to sleep for the night. Help is always close at hand. In truth, if someone really wanted a dangerous and risky and edgy vacation, he could leave Vegas and trek around in the open desert that surrounds it. But that would be outside the bounds of group think.

My favorite things about Vegas were the flowers at the MGM Grand reception desk. These incredible arrangements featured roses and orchids placed upside down in long vases. Stunning. Also, we awoke on our first morning in Vegas to a sky filled with dramatic thunderclouds. This was really beautiful.

For the last 24 hours, I rented a car. We drove to Mt. Charleston and had dinner at the lodge. The food was the best we'd had, and the view of the mountains and forests was much more breathtaking than anything I'd seen at the hotels and casinos. The next day we toured the Ethel M Chocolate Factory and Red Rock Canyon. Definitely the natural won out over the man-made.

So like Disneyland, Vegas is now a place I never need to see again. I'm glad I experienced it, but that was enough for a lifetime.

Best Not to Travel Alone

For most of my adult life, I have traveled alone--to China and on many camping trips to remote areas throughout the U.S. and Canada. I always felt I could handle whatever came up--until now.

I was poised to take my very first camping trip since beginning dialysis. My truck is packed, and all is ready for an early-morning departure. All, that is, except my body.

About an hour ago, paramedics were here. This is at least the seventh time they've been at this apartment since I moved in last July. Most people have maybe one paramedic visit at the end of their life. I am averaging almost one a month.

I had checked my blood sugar at 4 p.m., and it was a bit high--233--so I took the amount of insulin my pump recommended. Two hours later I had lost consciousness. Thank goodness Aaron had come home, found me disorientated, and called 911. The paramedics measured my blood sugar as 35, a dangerously low level, and administered an IV of glucose. This brought my level up to 331, a swing in the other direction.

After they left, I had about 60 carbs and was going to take the appropriate amount of insulin to cover this, but my blood sugar was only 110. I couldn't understand this, so I used another glucometer to retest. This time I got 107. Close enough. How could it be that I had had glucose through an IV and then had a meal but my blood sugar was perfect without insulin?

It used to be that I could call Mary Kay, the diabetic nurse, and ask her advice after hours, but that is no longer the case. No one is available to handle diabetic questions after 5 p.m. and before 9 a.m. or on the weekends or when Mary Kay is on vacation. This is truly a case of penny wise and pound foolish. The cost of having a diabetic nurse on call 24/7 is far less than that of ER visits, ambulance rides, hospitalizations, and the dire consequences of extremely low blood sugar. But that's the way it is now, so I just have to muddle through, not knowing what to do, until tomorrow morning.

I always feel beat up and hung over after such a dip in blood sugar. It frankly gives me pause to think that this might have occurred when I was alone with Rasputin at some out-of-the-way, sparsely populated, off-season campground. Knowing that untreated low blood sugar can easily result in death, I've decided to forego the camping trip, at least until I understand what is going on with my insulin requirements.

Camping while on dialysis was something I really wanted to do, not just because I love getting away from the city, but because so very few dialysis patients travel at all, much less camp. Camping always gave me so much joy and brought so much adventure, wonder, and beauty into my life. I wanted to feel that freedom again. I wanted to go camping to say to dialysis, "You're not going to restrict me. I'll show you."

Sure, camping on dialysis would be a royal hassle. Since I wouldn't have electricity, I'd have to do four manual exchanges per day. One upon waking, the second at 1 p.m., the third at 5, and the last before bed. Two liters each, the drain bag placed on the floor of my truck and the solution bag on my dashboard so that gravity would feed the fluid into my peritoneum. A lot of hassle, but I knew it would be doable.

In the end, it's not dialysis that has prevented this trip, but diabetes, the root cause of the kidney failure.

All Dolled Up, No Place to Go

I was poised to have my first date in a very long time. This guy interested me. The first time that's happened in many years. He is a doctor who lives simply, thereby seeming to fit both my sexual and worldview fantasies. We arranged to meet for coffee near my apartment.

I got all dolled up because I like to look good when I meet someone. I pulled out my black heels, my fitted black skirt, a robin's-egg-blue top, black suit jacket, moonstone necklace, and dangly abalone earrings. I put on mascara, eye shadow, and blush. I even practiced walking about in the heels for good measure.

An hour before we were to meet, my date called and canceled. He didn't feel like going out and was more interested in staying home and relaxing with his dog than meeting me. He wondered if we could postpone our meeting. Yes, we sure can--indefinitely.

So now I am relaxing at home with my dog. He was groomed today, so he's especially cute. And he never stands me up.

Rasputin's Freakish Medical Anomalies

Two afternoons ago, Rasputin started to sneeze as if he were trying to blow his brains out his nostrils. They were such violent sneezes that shook his head and quaked his entire body. Much more than one would expect from an allergy.

This morning after I returned home from cardiac rehab, Aaron, who was getting ready for work, had an answer to the sneezing mystery. He had seen a blonde hair sticking out of Rasputin's nostril and had given it a tug. As Rasputin whined and fussed, Aaron eventually pulled out a 4-to-5-inch hair with follicle. No wonder the poor guy had been sneezing, trying to expel this strange protuberance from his insides. And as Rasputin's entire head is about five inches long with snout, this hair was either attached to his brain or holed up in a tight ball inside his nostrils. Either way it doesn't sound fun.

And to think that it was blonde when he is white and sable. Do he and I have that much of a connection that his medical challenges have to reflect upon me with my blonde hair?

A few months ago, when Rasputin went to the vet for his annual checkup, creatnine was found in his urine, marking a decline in kidney function. I put Rasputin on a special dog food that is good for urinary woes, forced him to drink more water, and held him while I whispered softly to him, "I love you so much, Rasputin, but I do not want you to take on my challenges. I want you to be healthy and live a long, healthy life. You don't need to do this to be close to me." The urine test a month later gave him a clean bill of health, no kidney problems.

I have heard from others that dogs sometimes take on the medical ills of their owners. That's how much they love us. I'm so glad I had a soul-to-soul with Rasputin because I love him way too much to want him to get anything I have--not even something that looks like one of my blonde hairs up his nose!

Student Newspaper Profiles Me

Following is the article that appeared about me and kidney donation in the Cal State Long Beach student newspaper. The reporter told me that 300 words had to be cut from his copy, but still he was given a good amount of space to tell the story.

Not everything here is quite accurate, but all said, I am happy that the article was run. I'm sure it will raise awareness and may inspire students, faculty, and staff who read it to become donors. That is what's most important. I heartily thank David, the reporter, for his efforts toward that end.

Health, happiness and a hell of a spirit



By David Cowan

Published: Wednesday, September 1, 2010

Updated: Thursday, September 2, 2010 02:09

Heidi Nye looks like a picture of health. Sitting in a large brown leather chair, her small dog Rasputin — a pound rescue — sleeps quietly in her lap. She’s smiling. Even on the hot August day, Nye’s mood is high and her spirit is energetic.

Looks can be deceiving. Nye has had Type 1 diabetes for almost 40 years and will need a kidney transplant if she wants to live another 40. Yet Nye remains optimistic and considers herself a romantic.

“Even with the dialysis thing, I would meet the man of my dreams, and he would give me a kidney,” Nye jokes. “I look healthier and lot of that is attitude.”

Nye was an adjunct professor of journalism at Cal State Long Beach from 1987-2009 teaching between one to five classes almost every semester of those 20 years.

“I was given the opportunity to teach by Larry Meyer, so I started and got asked back and asked back and asked back,” Nye said. “Teaching, it’s like being in love, when things are working right.”

To this day, Nye still maintains a close relationship with former students.


Defining the disease

“Type 1 diabetes is the most severe type, the pancreas is not working” Nye explains. “Most people have Type 2 which means that their pancreas is overworking.”

Doctors estimate that there are about 23.6 million people with diabetes in America, but only 18 million have been diagnosed with the condition. Nearly 90 percent of those diabetics are Type 2. With changes to lifestyle and weight loss, Type 2 diabetes can normally be reversed. Nye is not so lucky and, for years, used an insulin pump. An insulin pump is an alternative to multiple daily injections of insulin by insulin syringe or an insulin pen. The pump releases a continuous insulin supply.
“Someone will say on TV that we’ve done wonders for [the treatment of] diabetes, but not for Type 1,” Nye said. “They solve Type 2 by putting people on better diets.”
Nye describes a bad insulin reaction as a near death experience, depending on how far gone you are.

“You get adrenalin sweats and it feels like you’re going to die if you don’t get something to eat,” Nye said. “It’s the adrenaline rush, the fight or flight…that wreaks havoc on the body.”


Dawn of dialysis

Initially, Nye was dead set against the idea of dialysis.

“I’m not going to do it,” Nye said she once claimed. “I’d prefer to die.”

However on Feb. 2, 2009 Nye began dialysis. Dialysis is primarily used to provide an artificial replacement for lost kidney function in people with renal failure. It is an imperfect treatment to replace kidney function because it does not correct the endocrine functions of the kidney.

It was “10 years building up to dialysis,” Nye said. “I don’t know how I got up — getting dressed would exhaust me.”

It was little wonder Nye was exhausted, in the last decade she was basically a workaholic filling her days teaching, working, editing and taking shifts as a massage therapist.

“It’s something to do with your hands and very spiritual,” Nye said.

During this time, Nye was working 7 days a week and also fulfilling her mom duties with her son who was going through junior high and high school. All this time, fluids were building up in her body.


What are sick people?

“People have different ideas of what sick people are, whether they should try avoidance or pity,” Nye said. “You learn to take care of yourself and I developed a positive nature.”

Nye has since been put on a waitlist for a kidney donation. In California, the wait for a type O kidney is 10 years. The lifespan of a person on dialysis is about 5 years. The waitlist for a kidney in Oregon, however, is only three years.

"People talk about moving to Oregon for the weather, I might move there for a kidney,” Nye said.

Even if Nye were to get a kidney, issues within the health care system make it difficult to keep.

“As soon as you’re on dialysis, you go on Medicare, however, you lose Medicare one year after you get a transplant,” Nye said. “You get off Medicare, you get off your immunosuppressants, you get back on dialysis.”

Immunosuppression involves an act that reduces the activation or efficacy of the immune system. Deliberately induced immunosuppression is generally done to prevent the body from rejecting an organ transplant, treating graft-versus-host disease after a bone marrow transplant.


Treatment

To fend off kidney failure, Nye undergoes the nightly process of peritoneal dialysis, where fluid is introduced through a permanent tube in the abdomen and flushed out every night while she sleeps. PD is used as an alternative to hemodialysis though it is far less common. It has comparable risks and expenses, but on the upside, Nye doesn’t have to get treatment from a medical facility. A major complication with PD is a risk of infection due to a permanent tube in the abdomen.

Nye’s dialysis machine is in her bedroom, which contains her bed, her dialysis machine, air purifier and several dozen boxes filled with glucose solution.

Watching Nye prepare her dialysis is as mesmerizing as it is meticulous. Nye begins by taking her blood pressure to “regulate the fluid balance.” After thoroughly scrubbing her hands with an antibacterial soap, she sprays the “cycler” down with Lysol disinfectant to ensure a sterile environment.

Now it’s time for a second round of scrubbing. This time, she also uses disinfectant wipes on each of her fingers. Her mood resembles some sort of deep meditation — focused but serene. She easily lifts two 5-liter bags of dialysis solution and a single liter of primer that will wash the impurities out of her blood later that night. Between the draining of the fluids in her system and the cycling of the new solution, the process takes 9-10 hours.

Finally, Nye puts on latex gloves and a surgical mask to protect against any other possible infection. She turns the machine on and normally waits for 30 minutes to heat the solution.

“When I change my dressing, I have a surgical mask on and I scrub with antibacterial soap and hydrogen peroxide,” Nye says about her permanent abdominal tube. “Having tape on your body 24/7 for 18 months, it itches and has the possibility of fungal or bacterial infection.”

Nye’s bedroom is unique for one other reason.

“I wanted a dog for companionship, but the dog stays away from the bedroom,” Nye said, keeping a close eye on Rasputin. The dog sits by the door, looking longingly into the forbidden room, mildly intimidated by the air purifier.



Incentive to change


Despite her health issues, Nye still leads an active lifestyle and has offers to continue teaching.

"Just the other day, I got a call from Dominguez Hills asking me to teach, with three days before the semester starts,” Nye said.

But Nye is working to raise awareness about organ donation as part of the Alliance for Organ Donor Incentives.

While The Alliance desires incentives for organ donors, they clearly state on their website organdonorincentives.org, “We are not proposing that private wealthy people should be allowed to buy organs or that money be waved in front of people who are desperate for money. For anyone who needs cash in a hurry, donating an organ under this proposal will not satisfy their need.”

Nye is currently the secretary of The Alliance and does several jobs from her home in order to raise awareness.

"I began tweeting as ‘dialysisdoll,’ posting news items, trying to say something significant in 140 characters,” Nye said. Nye also uses Facebook and maintains a blog, heidisheart.blogspot.com, to promote donor incentives.

“We should treat [organ donors] as heroes, we pay firefighters well for public services, that is something society values” Nye says. “[Donors] are saving lives, this is good for society.”


The journey continues

Nye met Robbie Berman, president of The Alliance, at a speaking engagement in Los Angeles, where he thought she’d be a good face for the organization as she is outwardly very healthy looking, despite being on dialysis. Eventually the two became involved in an HBO documentary about organ donation. It was during the filming in New York that Nye broke her hip and was hospitalized.

“The dialysis makes my bones brittle,” Nye explains. “The doctor in New York told me that if I wasn’t on dialysis, I would have fallen and gotten back up again.”

It was during her hospital stay that Nye tripped and broke her hip a second time. Even with the pain, Nye managed to look at the experience in a positive way.

“It was good filmmaking in the life of a dialysis patient,” Nye said. “We may look bright and vibrant, but we’re frail.”

The filming stopped and has been on hold for several months. Nye has heard that several other people who were involved in the documentary have since died waiting for an organ donation.


A Glimmer of Hope
In Phoenix, Arizona, a woman named Cindy has the type O kidney that Nye would need to get off dialysis permanently. Cindy’s brother received a kidney from a donor and now wants to be a donor herself. Nye and Cindy share one more coincidence, Cindy’s friend is a former student of Nye’s at CSULB.

Despite the astronomical odds that connect Cindy to Nye, there’s still much to be done and Nye remains cautious.

“I had a surgery scheduled with a neighbor [for a donation] but we just missed out with the final cross match,” Nye said, undeterred by the narrow miss. “We always say potential donor, people back-out, there are problems with cross matching. We’re asking people to give out of the kindness of their hearts.”

The two are still trading emails and haven’t yet talked on the phone.

Even if Nye gets a kidney, she says she plans to continue being an advocate for donor incentives.

In the end, Nye sums up her philosophy about life simply.

"It’s more about chutzpah than about health.”



For information on becoming a donor go to lifesharers.com or donatelifecalifornia.org.

Kidney Connections

Since Susie's solicitation letter was sent out, several wonderful things have happened:

* Raul, the department chair at the journalism department, suggested that the student paper run a story about me. The reporter came by last week to interview me and the story appeared on Wednesday. Though there are several inaccuracies and made-up quotes, overall it gets the message across. I'll post the story in my next post.
* At a meditation class I attended this past weekend, I met Alon, an Iranian-born, Israeli-raised man in his 40s who told another student in the class and me something he had not told anyone before: He is going to donate a kidney to his cousin. Alon and I both are working with Suzanne, one of the transplant coordinators at UCLA.
* Best of all, Cindy, a 26-year-old from Phoenix, is interested in becoming my donor. Susie's letter was forwarded to her by her friend Julio, who is a former student of mine. Cindy's brother received a kidney from their sister 15 years ago, and both are doing well. Ever since then, Cindy has wanted to become a living donor. She's an O, and so am I, so this just might work. Cindy and I spoke for the first time this past Saturday evening. She seems really interested, and she said, "Where there's a will, there's a way." She struck me as compassionate, mature, and well-informed. Of course a lot of things could happen to prevent her from donating, and we don't even know yet if we're compatible, but it's a beautiful sign. This is the kind of connection that is made possible by the Internet.

So connections are happening. As I have learned at least two times already, one only has a potential donor until the surgery actually takes place. When Janet said she'd be my donor last August, she was a potential donor because we eventually found out that she is an A and I'm an O. Then this summer, I had surgery scheduled for Aug. 11, but two weeks before, I found out that Janet was not compatible with the other recipient, even though I was compatible with the other donor, so the paired donation did not take place.

All I can do is what is the best thing for anyone to do in this kind of situation or any situation: Do my best and then let go. Be unattached to the outcome. If I receive a kidney, that would be such a beautiful gift, such a great blessing. But if it doesn't happen, I understand that I probably will die within the next few years. I prefer the former scenario to the latter, but I cannot get wrapped up in one outcome or the other. Actually, the longer I deal with health problems, the less I focus on outcomes. More and more, I stay in the present, not in some future is always so much different than any I can imagine.

The Irony and Poignancy of a Novel in my Own Alley

It's awfully hot today, so I only took Rasputin for a short walk this afternoon--down the block and back home via the alley. As we neared the gate off the alley, we came across a young man sitting in the brambles, holding a brown bag from which emerged the top of a large Miller's bottle. He had a full head of wavy, black hair and beautiful dark eyes. His clothes were worn but not shabby. Definitely the most handsome homeless man I'd ever seen and one of the best looking men I've seen of any kind for a long time. There seemed to be a kindness about him. Unlike the chronically homeless I've often met, his consciousness was not solely fixed on survival.

As he and I exchanged friendly glances and I admonished Rasputin to "be nice," I heard young women's voices singing from the porch of the sorority house at the end of the alley and across the street. I continued to walk toward the back gate, but then stopped to listen before passing into the backyard. The sweetness of their song was so incredibly poignant. It was a song of sisterhood and lifelong bonds. It was a song welcoming new girls into the house.

The juxtaposition of the young man whose only friend appeared to be a Miller's bottle and these young girls singing about the emotional bond between them was overwhelmingly clear to me. I glanced down the alley toward the man and saw that he too was looking in the direction of the girls, no doubt feeling the poignancy himself.

I got some juice boxes and four energy bars from my kitchen, walked back to the man, and said that it was so hot today that I was concerned he'd get dehydrated. He motioned to the brown bag and said, "And this isn't helping." I smiled and agreed that it wasn't.

The Blind Leading the Blind

This past Saturday my friend Bev and I participated in a hike with the blind. I had expected to hold the hand of a sightless person and guide him or her along the trail. Boy, was I wrong!

When I arrived at Newport Bay Back, approximately 25 sighted persons from the OC hiking meetup group, a half dozen blind people, and Bev were already assembled. The leader was Brian Bushway, a gregarious, 30s-ish bear of a guy who freely made light of his blindness. He was a true joy. He and the other "mobility coaches" led the sighted on a three-mile hike, over sometimes steep and rough terrain. They were all faster hikers than me.

Halfway through the hike, some of the sighted persons donned blindfolds and canes to see how they would fare without vision. Some did surprisingly well; others were completely lost. I'm sure this disparity had to do with the person's observation skills. Each blindfolded person had a blind guide who kept the sighted from getting into any trouble with their footing.