"You want to know what it’s like?” asks Maggie, a thin blonde in her 60s. “In plain words, it’s hell.”
Maggie sounds exhausted. She can’t get inside the medical transport van fast enough. Veronica, the van’s driver, had warned me that “post-dialysis, the patients tend to be grouchy, tired, dizzy, and they don’t want to talk. Before dialysis, they are kind of looking forward to it. They don’t like it, but the attitude is way different than when they come out. Maybe it’s the long hours on dialysis.”
When Veronica and I arrived at the East County Dialysis Center in El Cajon, I hadn’t realized that the energetic, tanned woman who walked so briskly to the van was a kidney dialysis patient. She looked healthy, and her bright blue eyes conveyed both an intense nature and annoyance at being picked up ten minutes late.
“No offense to you, Veronica,” Maggie (not her real name) says, “but I have to rely on someone to get me there [ the dialysis center] and get me home. And I hate that.”
Veronica nods. She knows that patients have to wait to get on dialysis, wait three or four hours to complete the procedure, wait afterward for approval to leave, and then wait for a ride home. Veronica explains to Maggie that when one patient doesn’t finish on time, it throws everyone else off for the rest of the day.
A driver for Joy Transportation Company, Veronica has an empathy other drivers may not have. Her father-in-law recently became a dialysis patient.
“When things happen with patients,” Veronica saw, “like thev get sick or something, it really hits home for me because I do have a family member with the disease
“I never realized that so many people have this disease. I never knew to what extent people had it until I took this job driving patients. Now I’m thinking of becoming a donor. You really build a bond with patients because you see them three times a week. You fed like they are part of your family.”
Veronica is the only woman driver for Joy Trans, but she says that “it’s easy, we’re all equal here. You have to have some upper-body strength, but if the wheelchair is good, it doesn’t matter how heavy the patient is.
“I’ve worked in other jobs, such as in retail, where they say that the customer is always right. Well, here at Joy Trans, I think the unofficial motto Is that the patient is always right. We put the patients and their needs before anything, and I think that is a good goal. We do things, favors, for them sometimes if they need it. Like, say if they ran out of milk, and they didn’t have any way of getting to the grocery, we’ll go pick some up as a favor.”
As Veronica maneuvers the 1995 Chevy van through traffic on I-8, she recounts the anxiety she feels when she goes to a patient’s home for a pickup and the patient doesn’t respond.
“If I knock on the door and there is no answer, i get worried. A lot of things go through my head. Are they too sick to come to the door, or worse, have they died? When I come across people that don’t answer the door, I call my dispatcher right away so he can find out what may have happened. I’ve never been the first one to discover a patient had passed away, but one time I had a scare when the patient didn’t answer the door. Luckily, he was only in the hospital.”
Veronica typically works from 5:30 a.m. to 7:00 p.m. “When I drive each patient from the dialysis center to their home, it only takes about 15 minutes, and the rest of the time I am just waiting— reading or sitting in the waiting room — for them.” Most people have two kidneys. Located on the back wall of the abdominal cavity, each is roughly the size of a fist. The kidneys eliminate waste products from the body and regulate blood pressure, red blood cell production, and the body’s delicate chemical and fluid balances. Every two minutes the entire blood supply circulates through the kidneys, where excess water, salt, and chemicals are filtered out and eliminated in the urine.
Over 200,000 people in the United States know what it is like to depend on a kidney dialysis machine. They have kidney failure, or end-stage renal disease (ESRD).
Maggie sits quietly in the front seat of the van and snaps that she’s not feeling well.
“When I’m feeling bad and sick,” Maggie says, “it [kidney disease] takes over my life.”
I feel guilty for asking her so many questions. However, Maggie perks up and her blue eyes shine when she remembers she has photos of her grandchildren to show us.
“I have 25 grandchildren,” Maggie says. “I tell people that my grandchildren are like the United Nations because I have Filipino, Hispanic, black, Indian, Japanese, and white grandkids. You name it, I’ve got it.”
We stop in front of an apartment complex in El Cajon to drop off an elderly African-American woman who has lost most of her ability to hear, to see, and to walk.
The Health Care Financing Administration, which administers Medicare benefits to people with end-stage renal disease, reports that “black persons had the highest incidence rate, followed by American Indians, white persons, and Asian persons.” Dr. Donald Molony, Associate Professor of Medicine at the University of Texas Medical School, has observed that “causes of kidney failure, such as high blood pressure and diabetes, may affect individuals in different ethnic groups differently and thus may result in varying degrees of damage to the kidneys.”
As Veronica pulls the woman’s wheelchair onto the van’s wheelchair platform and lowers it to the ground, children crowd around the van. “What’s going on with her?”
“What’s Joy Trans?” “What’s wrong with her?” “ Did she go and give blood again?”
“Where did you go, where did you take her?”
Veronica does not answer their questions, as she must maintain patient confidentiality. The dialysis patient in the wheelchair waves the children away, unable to hear their questions but annoyed by their nearness to her.
As we drive away from the complex, Veronica comments, “I see these kids three times a week, and they think that I take her to give blood. I told them what Joy Trans does, that we transport dialysis patients, but I can’t give out specific information about the patient.” Maggie, who had been shouting to Veronica, “'Tell them. Answer their questions," is annoyed.
“It’s better to let the kids know what’s going on,” she explains. ‘They don’t mean any harm by it; they’re just naturally curious.”
We drive on to Maggie’s apartment building, about a ten-minute ride from the dialysis center.
“What I also hate about this (dialysis),” Maggie says, “is that I know I have to go. I know that if I don’t go, I’ll die. Sometimes I think, so what? I’m going to die anyways, but sometimes I get scared. There was a guy who was sitting next to me at dialysis for a long time now. The last time I was there the guy was moaning and groaning, andI1 wanted to tell him to shut the hell up. But now I feel bad, because I found out he was really sick, dying, in the hospital.” Maggie is alternatively rebellious about her condition and resigned. She has lived with another chronic medical condition, diabetes, for almost 30 years.
Diabetes is the leading cause of renal failure in the United States. Thirty-two percent of renal-failure patients lose their kidney function because of diabetes. Hypertension, or high blood pressure, is the second most common cause. In an increasing number of patients, kidney failure has been caused by drug use.
“I know I should watch my diet, but I don’t. I eat what I want to eat because I figure I’m going regardless. I’m very bad about taking my meds too,” Maggie remarks. “Like I said, it’s hell. Plain and simple.”
A typical dialysis day for Maggie starts with a bath in the morning. Maggie’s fistula, an artificial graft made of plastic tubing for the needles to lap, is in her leg.
Maggie continues, “ Then I watch The Price Is Right and wait around for Veronica to come take me. It gets boring, so monotonous just sitting there at dialysis. Sometimes I read or crochet, but today I watched TV and then fell asleep.
“The way I get through a dialysis day,” Maggie says, “is that I know my son is going to pick me up and take me to see my grandchildren. I got to see my babies. Got to.”
Maggie smiles. This is the only time I see her smile.
After dropping off Maggie, the van returns to the East County Dialysis Center to pick up Patricia Burnett. Patricia is waiting inside the glass doors of the center, sitting in her wheelchair. She leans forward in the chair, trying to push open the doors with her thick, heavy arms. Although friendlier, more upbeat and talkative than Maggie, Patricia is also anxious to leave the center.
As we talk, I notice that Patricia is trying hard to be polite and pleasant, but she sinks into her wheelchair and speaks slowly and weakly, it is evident that she is fatigued from the dialysis.
Veronica secures the wheelchair in the back of the van while Patricia recounts her experience with dialysis.
“I was diagnosed with diabetes in 1977,” Patricia says, “and 18 years later, in 1995, all of a sudden, I felt real sick. I was throwing up all the time and didn’t know what was wrong.” Her physician at the Navy Medical Center performed tests to confirm his suspicion that Patricia’s kidneys were failing.
She had chronic kidney failure.
“I was maintained for one year on medications and didn’t start dialysis until 1996, when it looked like my kidneys weren’t doing what they should be doing anymore,” Patricia recalls. “They (the doctors and medical staff! prepared me some. They showed me movies and gave me things to read, but I have cataracts, so I can barely see, never mind read.
“You are never actually prepared [for dialysis] until it happens. Kind of like childbirth. They say it hurts, and you know it in your head, but until that minute that the contractions start, you don’t know how much it really hurts.”
Patricia says “really hurts” so dramatically that I have to ask, because I have not gone through it yet, “Does childbirth really hurt that much?”
“You bet your bottom dollar it does,” Patricia answers. “But God erases the pain from your mind the minute you see that child.”
I ask about the changes kidney dialysis has made to her life.
“You really have to watch everything you put in your mouth or you’ll throw yourself off, make yourself sick,” Patricia explains. “I was the type of person who drank a lot of water, and now I am restricted to 48 ounces a day. I get really thirsty too, so I try to help myself by chewing on ice cubes. An 8-ounce glass of ice, the kind of ice with the holes in them, is really only 4 ounces of water, so they last longer and help keep my thirst quenched, my throat not so dry.”
Healthy adults lose the fluid they ingest through breathing and excretory functions, while most dialysis patients, not being able to excrete much urine, gain between four and six pounds of fluid between dialysis treatments.
Patricia shakes her head sadly. “I was really surprised that my kidneys went because I always drank lots of water — and I mean lots. I thought for sure my kidneys were well flushed. My doctor said he found it hard to believe that my kidneys failed as a result of diabetes, because I take care of myself so well, but he never told me what he thought it was from.”
I visit Patricia Burnett in her HI Cajon home on her “off’ (nondialysis) day and immediately notice a difference in her mood and energy level. She seems happier and more relaxed. Patricia sits in her wheelchair, playing solitaire, feeing the open door so she can watch passersby in the apartment complex.
Patricia is heavy, with wavy brown hair that is turning gray. She wears large squarish glasses and a black stretchy blouse with lacy elbow-length sleeves. Her eyes are kind and brown, though tired. She sits in her wheelchair, back straight, with hands resting on her large middle. Patricia smiles easily and has a warm, deep voice. She is barefoot and rubs her feet intermittently on the brown carpet.
The apartment is small. We sit in the living room, surrounded by cases of trinkets, vases, framed photos, and small figurines. Two couches face each other. Dennis, a young white man with reddish-brown hair, is Patricia’s 25-year-old son. He lies on one couch and stares at the TV with a look of boredom on his face, while I sit on the other couch next to Patricia’s wheelchair.
Patricia lifts an ice cube to her mouth with a plastic spoon and crunches on it every few minutes.
“Of course my life changed economically when I was diagnosed with ESRD, but it has been okay because I know what to expect each month in terms of expenses and income. What changed my life more in an economic sense than having my kidneys fail was my husband leaving me after 24 years of marriage. It really threw me in a tail-spin, and my financial situation was very poor.
“I worked for half of my life as a housewife,” Patricia says, “but I didn’t get a check for it. My husband should have given me half of his earnings. I made it so he could work, taking care of the kids and keeping house.
“I was so bad off that I couldn’t afford a wheelchair until my mother bought me one secondhand for Christmas, and that has really made a difference for me. Once I’m in the chair, I can be wheeled around and see things and I’m not confined to one place.”
While Patricia waits in the dialysis center, she chats with patients who are also there week after week. ‘There’s this woman who is so medicated she just slumps in her chair and is so out of it. That makes me think that she is really in a bad way, and I think that maybe I’m not in such bad shape. And there’s a former minister who was with the Marine Corps and he’s missing one of his legs and they had to amputate his foot. The diabetes had destroyed the blood vessels in his extremities. A young woman, a young mother, she just lost both legs. First they just took her toes and tried to save her legs, but they couldn’t.” Patricia starts to cry. “I pray, dear Lord, stay with me,” Patricia sobs. “That would be so hard for me, to lose parts of myself. That’s why I am so careful about my extremities and infection. I don’t want any infection starting because it will just grow and grow and they can’t do nothing about it. Although my hands and feet have no feeling anymore — they’re numb from the diabetes — at least they are still part of me.”
Dennis Burnett looks like a 20-something slacker, still living at home with his mother, but I am proven wrong when I discover that Dennis, who is my age, is his mother’s primary caretaker. He is paid by the state to make sure his mother eats, bathes, and has her needs met. Dennis washes her hair and sets it, shops for groceries, cooks, cleans the house, and does the laundry.
“I get paid by the state to take care of my mother,” Dennis says, “but they only pay me for 50 hours per month,” Dennis says. “If I stopped and started a stopwatch each time I did something for my mother and for those three times a week that she comes home after dialysis and is sick and I take care of her, believe me, it would come out to a lot more than the 50 hours that the state pays me minimum wage for.”
Dennis is not in school and is unemployed, due to a layoff.
“The state is saving so much money on people like me, those of us who are taking care of family members,” Dennis says. “If the ill family members were put in nursing homes or the state had to pay professionals to take care of them, it would come out to a lot of money.”
Dennis talks about joining a union of home health-care workers. This union is just starting up and wants benefits such as medical insurance and vacation, holiday, and sick pay.
Patricia explains, “They [the state] don’t realize that if I wasn’t sick in this condition that Dennis wouldn’t be living with me; he’d be living alone, and I would be able to care for myself. I would have my own life and he would have his own life. But because I’m this way, sick, he has to be here with me.”
Dennis looks upset; his eyes are worried, and he interrupts. I can see he would like to tell his mother that he wants to take care of her, that she isn’t a burden to him.
“It’s not that bad,” Dennis says to me. “I can’t complain, because my mom could have had a life, done things she wanted to do, if she wasn’t so busy taking care of my brother and I as children. With my mom and I switching roles, I take care of her and, sure, there are things that I want to do like go out and visit my friends, but I know I can’t because she needs me to be here for her.”
“You’re able to visit your friends,” Patricia remarks.
“Yes,” Dennis agrees, “but not often, and I have to really plan in advance and make sure it isn’t on a dialysis day. My friends see me and see how much stress I’m under. They don’t see how 1 can do it. But I know in the king run my life will change and be mine again, but for right now, I want to be there for my mom and I don’t mind putting my own life on hold. It’s because I’m close to her that 1 can do that.”
“You’re doing for me what your friends that have kids are doing for their children,” Patricia says.
“Yeah,” Dennis says, “but with children it’s different. My friends can tell their kids to go out and play or the kids can go to their friends’ houses. Then my friends are able to have some alone time.”
I feel an argument brewing. I say what an exceptional son Dennis is and how his devotion to Patricia is unusual in a person in his 20s.
“Yes,” Patricia says. “Yes, he is a good son.” •
“The only advice I have for new dialysis patients is to trust in God and trust in your doctor,” Patricia remarks. “There is nothing you can do to change your situation, so just hope that everyone knows what they are doing and hope that God will guide you all through it.”
Dennis pipes in, “And ask a lot of questions.”
The next patient I interview is Patrick Geske. He is 24 years old. When I meet Patrick early in 1997 at the dialysis unit, I’m told we can speak for only 15 minutes, the time allowed visitors. The first thing I notice about Patrick are his eyes. Patrick’s large brown eyes seem to bulge, and the whites have a yellow hint to them. He sits in a vinyl chair, his arm attached to the softly whirring dialysis machine by two plastic tubes that are dark with his blood.
Patrick, like me, was born in the Philippines but raised in the United States. Since I am from Boston, where the Filipino-American community is tiny, I am excited to meet another Filipino-American. So I try to greet him in Tagalog (or Pilipino, which, besides English, is the official language of the Philippines), but we are both rusty in the language and laugh it off.
I catch Patrick at the end of his dialysis session; he is energetic and alert. Later, Patrick tells me that sometimes he feels very sick after dialysis. Patrick has an athlete’s build, his sinewy muscles more characteristic of a runner than of the high school football player he once was.
His fiancee, Abigail, also Filipino, tells me she had to trick Patrick into going to the doctor’s, where he was diagnosed with renal failure in July 1995. She had noticed a dramatic weight loss in Patrick after their mutual friend, who had been living with them, died.
“My friend had bone cancer, and they thought they got it out, but it had spread to his lungs and he died,” Patrick remembers. “And I didn’t know that cancer wasn’t contagious, and he had been living with us before he passed away. So here I am thinking I have cancer. When I was first in the hospital, my family was scared because they thought my friend wanted me with him, was trying to take me to wherever he was on the other side.
“I was showing no signs,” Patrick recounts. “If it wasn’t for Abby.. .she was telling me I was losing weight and I said, ‘No, I’m not.’ I was very much in denial. I he only time I felt sick was at night. I would have a fever, but in the mornings I would be rejuvenated and strong again. So I just tried to ignore those nightly fevers.
“But then I got curious, and finally I went to weigh myself. I saw I had lost 40 pounds since the last time I had gotten on a scale.”
Because he’d saved up some money, Patrick had quit his job as a slot-machine repair technician at a San Diego casino to spend time with his best friend, planning to return to work after his friend passed away. Patrick became sick 30 days after leaving his job, which meant he did not have health insurance. “I didn’t realize that the insurance covered you only for 30 days,” Patrick says, “so it had cut out on me when I was sick. I had to apply for medical help. Luckily, I’ve been working ever since I was 16 years old, and I was making enough to qualify for state coverage.”
When the doctor got the results from the tests he’d run, he checked Patrick into the hospital the same day. “The doctor, when he got the test results back, kept on staring at me and asking, ‘Are you sure you’re all right?’ I said, ‘Yeah, I’m fine. I drove myself here and went jogging yesterday.’ And the doctor said, ‘It’s hard to tell you this because you are so healthy, but technically you shouldn’t even be walking around.’
“He was shocked my body was letting me walk around. My blood was so toxicated, the level was so high, I should have been in a coma. I could have died. The doctors said within two or three days, if I had went to sleep, my blood toxicity levels were so high there could have been a possibility that I would have went to sleep and never woken up.”
When Patrick was diagnosed with acute renal failure, doctors hoped that his kidneys would begin to work again. He doesn’t have diabetes or a family history of renal failure. His medical team was puzzled, speculating that a viral infection had destroyed his kidneys. After further testing, doctors told Patrick that his kidneys had permanently shut down and he would have to rely on dialysis to maintain his health. Family members and Abigail offered to donate a kidney for transplant, but Patrick wanted to see how he fared on dialysis first.
“I wanted to give dialysis a try before I took the risk of transplant. I had to see how it went before I could feel comfortable subjecting a loved one to the surgery. And it wasn’t that bad. I knew dialysis was keeping me alive so I couldn’t complain. It was just something I had to do.
“Under the government, I am considered a handicapped person. I can go and get a handicapped placard because I am considered disabled,” Patrick says, smiling. “But of course I don’t.”
Patrick was assigned a team of medical professionals and a social worker. “My social worker is great. She actually went with me to the Social Security office to figure out what was going on with my benefits under Medicare. The first time I applied for medical help they lost my paperwork, and then three more times I had to apply and they lost my paperwork. I didn’t get approved for dialysis benefits until this past Christmas 1996, and I have been on dialysis for almost two years.”
The 1972 amendments to the Social Security Act extended Medicare benefits to people with end-stage renal disease, covering treatments such as kidney transplants, drug treatments, hospitalization, and dialysis. Paul Eggers, senior research analyst for the Health Care Financing Administration, estimates that kidney dialysis costs about $45,000 per patient per year. According to Eggers, transplant surgery also costs about $45,000, plus an additional $5000 in associated physician costs. Eggers stresses, however, that 20 percent of transplants fail in the first year, and the patient returns to dialysis. In the first few years following surgery, transplants cost more on average per year than dialysis, but after the third or fourth year, transplant becomes the more cost-effective treatment.
Patrick set aside three mornings a week to dialyze. The rest of the day was spent recovering from the nausea and fatigue.
“They tell you you should feel stronger after you are dialyzed,” Patrick says, “but 1 feel weaker.”
About a year after first being dialyzed, Patrick began to exercise again. “I used to bench press 305 [pounds), but now I can only do 150,” Patrick says.
Patrick’s weight chart looks like a roller coaster. “Before I was sick I was 160 (pounds], and when I was weighed in at the hospital I was 119. When I left the hospital that first time, I was 130.
“Now I have to be really aware of my weight and watch it. They call it dry weight. I will go in for a treatment and weigh in at 160 and come back two days later and weigh 165. During dialysis, they try to get me to my dry weight and that is when I get sick. I feel dehydrated and I cramp up.
“Both physically and mentally, I notice a difference in myself. I checked into the hospital at 5 foot 8 and left at 5 foot 7.5 inches. So I shrunk.
“Also, I’ll say something, and ten minutes later I will forget I said it. That’s frustrating because everyone will say, ‘You just said that.’ And I won’t remember. When I get a thought, I tell myself at that moment to remember it, but then I don’t.
“I learned so much from my best friend. He was always telling me things because he knew he was about to die. He really wanted to live and he would drag me to church with him to pray to God to let him live. If it wasn’t for him and Abby, I wouldn’t be this strong about my illness.
“My friend and I would be hanging out and he would say, ‘Hear that? Those birds sound so beautiful.’ I hadn’t even noticed the sound that was always there in the background.
“But when I was in the hospital that first time and I found out how lucky I was to be alive, I would open up the curtains and instead of seeing smog, I would sec the beautiful blue sky. It was the most beautiful sight I had ever seen, even though it was the same setting, the same sun, birds, view, and buildings that I have seen for a lot of my life. But for some reason, that morning it was like seeing it for the first time. Everything was more beautiful to me from then on.”
Right before Patrick became ill, he and Abigail had gone to Las Vegas to get married.
“My friend was going to be the best man,” Patrick says. "We had the money, and we went to Vegas to get married, but we saw the longest roller coaster in the world and an animal park, and my friend had never been on a roller coaster before or seen many animals. He was 20 years old and had never been on a roller coaster. So we didn’t have any money left over to get married.” Patrick laughs. “And the chapel didn’t take checks.”
“She,” Patrick says pointing to Abigail, “is the biggest part of my life. She quit her job to be with me in the hospital And while I was there, she didn’t treat me like I was sick. Even now, she treats me the same as before I was sick. If I ask her to get me something, she’ll say, ‘No, you can get it yourself.’ She doesn’t baby me.
“She’s strong about everything. Dialysis affects my moods. I have bad mood swings. If I have a bad day on dialysis, I’ll feel really awful and be awful acting and Abby puts up with me. She makes me strong.”
In April 1997, after two years on dialysis, Patrick decided to accept the donation of a kidney from his sister Tammie, a 22-year-old loan officer.
A kidney transplant operation takes about three hours. The new kidney is inserted in the lower abdomen and the vessels of the new kidney are attached to the recipient’s body. The patient’s kidneys usually are left inside the body unless they pose a threat of infection. Urine production can start within five minutes after blood flow begins to the kidney. According to UCSD, the risk to the donor is the same as for any surgery, but as donors are in good health, pain and risk are minimal. Most donors return to active lives in six to eight weeks.
When I see Patrick four months after his transplant and seven months after we first met, I note that the yellow tinge in his eyes is gone. He looks happy and relaxed, and although he was that way when I first met him, there is a new peace to his manner.
Patrick is on anti-rejection medications and steroids. The steroids have caused his face to break out, but instead of the anticipated weight gain and bloating, he has lost weight.
Patrick tells me about April 16, the transplant date.
“We [Tammie and Patrick] went into the operating room together, and even though we had gone through all the tests and Tammie matched four out of six of the blood tests and tissue typing, I wanted to back out. But Tammie looked at me from the stretcher and she caught my eye. She said, 'Kuya [Pilipino for brother], we’re doing this.’
“And she was so confident and sure that I felt not as scared anymore. If she hadn’t said that, I would have backed out. I didn’t want to put her through this major surgery and health risk. I didn’t want to put anyone through that.”
After the surgery, Patrick says he “felt great and wanted to get up and walk around. The doctors were so surprised to see me up and walking even before my sister.” The kidney began functioning immediately.
“When my kidneys first failed, I was still urinating,” Patrick says. “But it was only a little and the doctors said that my kidneys weren’t doing their job. But after this transplant. I’m fine. I didn’t need to get dialysis right after surgery like some people because my sister’s kidney was working so well for me.
“It’s funny. The doctor said that I might feel some of the things that Tammie feels. I didn’t really understand what they meant at first. But I love sweets and Tammie doesn’t: So when I was in my hospital room after the transplant, everyone gave me gifts of candies and sweets. And I didn’t even want it. I had totally lost that craving for sweets and sugar. Which is good, it’s healthier that way for me.
'Tammie and I have always been close, we are so close in age and all. We’ve always had a connection and would finish each other’s sentences and sometimes show up places wearing the same color. It is kind of like how identical twins are. But the candy thing was so strange.”
Because of complications, Tammie stayed in the hospital a day longer than Patrick. She returned to work three weeks after the surgery and says she doesn’t feel any different without her kidney. When the swelling and soreness diminish, Tammie wants to feel the spot where surgeons cut out a piece of rib to get to her kidney.
“I have to get used to these new meds,” Patrick says. “Especially the immune-system suppressors. They make me feel really irritable and short-tempered.”
“Yes,” Abigail agrees. Because Tammie’s kidney is a foreign object in Patrick’s body, his immune system will try to fight it. Therefore, he must take immunosuppressive medications all his life. This means that Patrick has to be careful not to pick up germs from other people.
“I really have to control my mood on these meds,” Patrick says. “Abby doesn’t have to deal with this, any of it, and yet she does. She is really unbelievable.”
Patrick’s attitude toward dialysis has changed too.
“Like I said in January, dialysis wasn’t really a big deal for me. But now I realize how much time it took out of my life, and I like not getting stuck with needles every other day. Sometimes when I would sit there being dialyzed, I would wonder when this would all end and if this is what I had to look forward to for the rest of my life. But I would try to have a good attitude about it. And now I have my life back; I have time to make plans and go on trips. I know you can go on trips as a dialysis patient, but the planning has to be far in advance.
“Now Abby and I can just take off and go camping or something,” says Patrick. “I should be able to return to work in a year, so I have that to look forward to also. Actually, the next thing Abby and I plan to do is get married. We want to get married, maybe in Laughlin or Vegas, and start having kids in the next couple of years.”
“Bring enough cash this time,” I joke.
Grace Talusan is in the M.F.A. program in fiction at the University of California, Irvine.
"You want to know what it’s like?” asks Maggie, a thin blonde in her 60s. “In plain words, it’s hell.”
Maggie sounds exhausted. She can’t get inside the medical transport van fast enough. Veronica, the van’s driver, had warned me that “post-dialysis, the patients tend to be grouchy, tired, dizzy, and they don’t want to talk. Before dialysis, they are kind of looking forward to it. They don’t like it, but the attitude is way different than when they come out. Maybe it’s the long hours on dialysis.”
When Veronica and I arrived at the East County Dialysis Center in El Cajon, I hadn’t realized that the energetic, tanned woman who walked so briskly to the van was a kidney dialysis patient. She looked healthy, and her bright blue eyes conveyed both an intense nature and annoyance at being picked up ten minutes late.
“No offense to you, Veronica,” Maggie (not her real name) says, “but I have to rely on someone to get me there [ the dialysis center] and get me home. And I hate that.”
Veronica nods. She knows that patients have to wait to get on dialysis, wait three or four hours to complete the procedure, wait afterward for approval to leave, and then wait for a ride home. Veronica explains to Maggie that when one patient doesn’t finish on time, it throws everyone else off for the rest of the day.
A driver for Joy Transportation Company, Veronica has an empathy other drivers may not have. Her father-in-law recently became a dialysis patient.
“When things happen with patients,” Veronica saw, “like thev get sick or something, it really hits home for me because I do have a family member with the disease
“I never realized that so many people have this disease. I never knew to what extent people had it until I took this job driving patients. Now I’m thinking of becoming a donor. You really build a bond with patients because you see them three times a week. You fed like they are part of your family.”
Veronica is the only woman driver for Joy Trans, but she says that “it’s easy, we’re all equal here. You have to have some upper-body strength, but if the wheelchair is good, it doesn’t matter how heavy the patient is.
“I’ve worked in other jobs, such as in retail, where they say that the customer is always right. Well, here at Joy Trans, I think the unofficial motto Is that the patient is always right. We put the patients and their needs before anything, and I think that is a good goal. We do things, favors, for them sometimes if they need it. Like, say if they ran out of milk, and they didn’t have any way of getting to the grocery, we’ll go pick some up as a favor.”
As Veronica maneuvers the 1995 Chevy van through traffic on I-8, she recounts the anxiety she feels when she goes to a patient’s home for a pickup and the patient doesn’t respond.
“If I knock on the door and there is no answer, i get worried. A lot of things go through my head. Are they too sick to come to the door, or worse, have they died? When I come across people that don’t answer the door, I call my dispatcher right away so he can find out what may have happened. I’ve never been the first one to discover a patient had passed away, but one time I had a scare when the patient didn’t answer the door. Luckily, he was only in the hospital.”
Veronica typically works from 5:30 a.m. to 7:00 p.m. “When I drive each patient from the dialysis center to their home, it only takes about 15 minutes, and the rest of the time I am just waiting— reading or sitting in the waiting room — for them.” Most people have two kidneys. Located on the back wall of the abdominal cavity, each is roughly the size of a fist. The kidneys eliminate waste products from the body and regulate blood pressure, red blood cell production, and the body’s delicate chemical and fluid balances. Every two minutes the entire blood supply circulates through the kidneys, where excess water, salt, and chemicals are filtered out and eliminated in the urine.
Over 200,000 people in the United States know what it is like to depend on a kidney dialysis machine. They have kidney failure, or end-stage renal disease (ESRD).
Maggie sits quietly in the front seat of the van and snaps that she’s not feeling well.
“When I’m feeling bad and sick,” Maggie says, “it [kidney disease] takes over my life.”
I feel guilty for asking her so many questions. However, Maggie perks up and her blue eyes shine when she remembers she has photos of her grandchildren to show us.
“I have 25 grandchildren,” Maggie says. “I tell people that my grandchildren are like the United Nations because I have Filipino, Hispanic, black, Indian, Japanese, and white grandkids. You name it, I’ve got it.”
We stop in front of an apartment complex in El Cajon to drop off an elderly African-American woman who has lost most of her ability to hear, to see, and to walk.
The Health Care Financing Administration, which administers Medicare benefits to people with end-stage renal disease, reports that “black persons had the highest incidence rate, followed by American Indians, white persons, and Asian persons.” Dr. Donald Molony, Associate Professor of Medicine at the University of Texas Medical School, has observed that “causes of kidney failure, such as high blood pressure and diabetes, may affect individuals in different ethnic groups differently and thus may result in varying degrees of damage to the kidneys.”
As Veronica pulls the woman’s wheelchair onto the van’s wheelchair platform and lowers it to the ground, children crowd around the van. “What’s going on with her?”
“What’s Joy Trans?” “What’s wrong with her?” “ Did she go and give blood again?”
“Where did you go, where did you take her?”
Veronica does not answer their questions, as she must maintain patient confidentiality. The dialysis patient in the wheelchair waves the children away, unable to hear their questions but annoyed by their nearness to her.
As we drive away from the complex, Veronica comments, “I see these kids three times a week, and they think that I take her to give blood. I told them what Joy Trans does, that we transport dialysis patients, but I can’t give out specific information about the patient.” Maggie, who had been shouting to Veronica, “'Tell them. Answer their questions," is annoyed.
“It’s better to let the kids know what’s going on,” she explains. ‘They don’t mean any harm by it; they’re just naturally curious.”
We drive on to Maggie’s apartment building, about a ten-minute ride from the dialysis center.
“What I also hate about this (dialysis),” Maggie says, “is that I know I have to go. I know that if I don’t go, I’ll die. Sometimes I think, so what? I’m going to die anyways, but sometimes I get scared. There was a guy who was sitting next to me at dialysis for a long time now. The last time I was there the guy was moaning and groaning, andI1 wanted to tell him to shut the hell up. But now I feel bad, because I found out he was really sick, dying, in the hospital.” Maggie is alternatively rebellious about her condition and resigned. She has lived with another chronic medical condition, diabetes, for almost 30 years.
Diabetes is the leading cause of renal failure in the United States. Thirty-two percent of renal-failure patients lose their kidney function because of diabetes. Hypertension, or high blood pressure, is the second most common cause. In an increasing number of patients, kidney failure has been caused by drug use.
“I know I should watch my diet, but I don’t. I eat what I want to eat because I figure I’m going regardless. I’m very bad about taking my meds too,” Maggie remarks. “Like I said, it’s hell. Plain and simple.”
A typical dialysis day for Maggie starts with a bath in the morning. Maggie’s fistula, an artificial graft made of plastic tubing for the needles to lap, is in her leg.
Maggie continues, “ Then I watch The Price Is Right and wait around for Veronica to come take me. It gets boring, so monotonous just sitting there at dialysis. Sometimes I read or crochet, but today I watched TV and then fell asleep.
“The way I get through a dialysis day,” Maggie says, “is that I know my son is going to pick me up and take me to see my grandchildren. I got to see my babies. Got to.”
Maggie smiles. This is the only time I see her smile.
After dropping off Maggie, the van returns to the East County Dialysis Center to pick up Patricia Burnett. Patricia is waiting inside the glass doors of the center, sitting in her wheelchair. She leans forward in the chair, trying to push open the doors with her thick, heavy arms. Although friendlier, more upbeat and talkative than Maggie, Patricia is also anxious to leave the center.
As we talk, I notice that Patricia is trying hard to be polite and pleasant, but she sinks into her wheelchair and speaks slowly and weakly, it is evident that she is fatigued from the dialysis.
Veronica secures the wheelchair in the back of the van while Patricia recounts her experience with dialysis.
“I was diagnosed with diabetes in 1977,” Patricia says, “and 18 years later, in 1995, all of a sudden, I felt real sick. I was throwing up all the time and didn’t know what was wrong.” Her physician at the Navy Medical Center performed tests to confirm his suspicion that Patricia’s kidneys were failing.
She had chronic kidney failure.
“I was maintained for one year on medications and didn’t start dialysis until 1996, when it looked like my kidneys weren’t doing what they should be doing anymore,” Patricia recalls. “They (the doctors and medical staff! prepared me some. They showed me movies and gave me things to read, but I have cataracts, so I can barely see, never mind read.
“You are never actually prepared [for dialysis] until it happens. Kind of like childbirth. They say it hurts, and you know it in your head, but until that minute that the contractions start, you don’t know how much it really hurts.”
Patricia says “really hurts” so dramatically that I have to ask, because I have not gone through it yet, “Does childbirth really hurt that much?”
“You bet your bottom dollar it does,” Patricia answers. “But God erases the pain from your mind the minute you see that child.”
I ask about the changes kidney dialysis has made to her life.
“You really have to watch everything you put in your mouth or you’ll throw yourself off, make yourself sick,” Patricia explains. “I was the type of person who drank a lot of water, and now I am restricted to 48 ounces a day. I get really thirsty too, so I try to help myself by chewing on ice cubes. An 8-ounce glass of ice, the kind of ice with the holes in them, is really only 4 ounces of water, so they last longer and help keep my thirst quenched, my throat not so dry.”
Healthy adults lose the fluid they ingest through breathing and excretory functions, while most dialysis patients, not being able to excrete much urine, gain between four and six pounds of fluid between dialysis treatments.
Patricia shakes her head sadly. “I was really surprised that my kidneys went because I always drank lots of water — and I mean lots. I thought for sure my kidneys were well flushed. My doctor said he found it hard to believe that my kidneys failed as a result of diabetes, because I take care of myself so well, but he never told me what he thought it was from.”
I visit Patricia Burnett in her HI Cajon home on her “off’ (nondialysis) day and immediately notice a difference in her mood and energy level. She seems happier and more relaxed. Patricia sits in her wheelchair, playing solitaire, feeing the open door so she can watch passersby in the apartment complex.
Patricia is heavy, with wavy brown hair that is turning gray. She wears large squarish glasses and a black stretchy blouse with lacy elbow-length sleeves. Her eyes are kind and brown, though tired. She sits in her wheelchair, back straight, with hands resting on her large middle. Patricia smiles easily and has a warm, deep voice. She is barefoot and rubs her feet intermittently on the brown carpet.
The apartment is small. We sit in the living room, surrounded by cases of trinkets, vases, framed photos, and small figurines. Two couches face each other. Dennis, a young white man with reddish-brown hair, is Patricia’s 25-year-old son. He lies on one couch and stares at the TV with a look of boredom on his face, while I sit on the other couch next to Patricia’s wheelchair.
Patricia lifts an ice cube to her mouth with a plastic spoon and crunches on it every few minutes.
“Of course my life changed economically when I was diagnosed with ESRD, but it has been okay because I know what to expect each month in terms of expenses and income. What changed my life more in an economic sense than having my kidneys fail was my husband leaving me after 24 years of marriage. It really threw me in a tail-spin, and my financial situation was very poor.
“I worked for half of my life as a housewife,” Patricia says, “but I didn’t get a check for it. My husband should have given me half of his earnings. I made it so he could work, taking care of the kids and keeping house.
“I was so bad off that I couldn’t afford a wheelchair until my mother bought me one secondhand for Christmas, and that has really made a difference for me. Once I’m in the chair, I can be wheeled around and see things and I’m not confined to one place.”
While Patricia waits in the dialysis center, she chats with patients who are also there week after week. ‘There’s this woman who is so medicated she just slumps in her chair and is so out of it. That makes me think that she is really in a bad way, and I think that maybe I’m not in such bad shape. And there’s a former minister who was with the Marine Corps and he’s missing one of his legs and they had to amputate his foot. The diabetes had destroyed the blood vessels in his extremities. A young woman, a young mother, she just lost both legs. First they just took her toes and tried to save her legs, but they couldn’t.” Patricia starts to cry. “I pray, dear Lord, stay with me,” Patricia sobs. “That would be so hard for me, to lose parts of myself. That’s why I am so careful about my extremities and infection. I don’t want any infection starting because it will just grow and grow and they can’t do nothing about it. Although my hands and feet have no feeling anymore — they’re numb from the diabetes — at least they are still part of me.”
Dennis Burnett looks like a 20-something slacker, still living at home with his mother, but I am proven wrong when I discover that Dennis, who is my age, is his mother’s primary caretaker. He is paid by the state to make sure his mother eats, bathes, and has her needs met. Dennis washes her hair and sets it, shops for groceries, cooks, cleans the house, and does the laundry.
“I get paid by the state to take care of my mother,” Dennis says, “but they only pay me for 50 hours per month,” Dennis says. “If I stopped and started a stopwatch each time I did something for my mother and for those three times a week that she comes home after dialysis and is sick and I take care of her, believe me, it would come out to a lot more than the 50 hours that the state pays me minimum wage for.”
Dennis is not in school and is unemployed, due to a layoff.
“The state is saving so much money on people like me, those of us who are taking care of family members,” Dennis says. “If the ill family members were put in nursing homes or the state had to pay professionals to take care of them, it would come out to a lot of money.”
Dennis talks about joining a union of home health-care workers. This union is just starting up and wants benefits such as medical insurance and vacation, holiday, and sick pay.
Patricia explains, “They [the state] don’t realize that if I wasn’t sick in this condition that Dennis wouldn’t be living with me; he’d be living alone, and I would be able to care for myself. I would have my own life and he would have his own life. But because I’m this way, sick, he has to be here with me.”
Dennis looks upset; his eyes are worried, and he interrupts. I can see he would like to tell his mother that he wants to take care of her, that she isn’t a burden to him.
“It’s not that bad,” Dennis says to me. “I can’t complain, because my mom could have had a life, done things she wanted to do, if she wasn’t so busy taking care of my brother and I as children. With my mom and I switching roles, I take care of her and, sure, there are things that I want to do like go out and visit my friends, but I know I can’t because she needs me to be here for her.”
“You’re able to visit your friends,” Patricia remarks.
“Yes,” Dennis agrees, “but not often, and I have to really plan in advance and make sure it isn’t on a dialysis day. My friends see me and see how much stress I’m under. They don’t see how 1 can do it. But I know in the king run my life will change and be mine again, but for right now, I want to be there for my mom and I don’t mind putting my own life on hold. It’s because I’m close to her that 1 can do that.”
“You’re doing for me what your friends that have kids are doing for their children,” Patricia says.
“Yeah,” Dennis says, “but with children it’s different. My friends can tell their kids to go out and play or the kids can go to their friends’ houses. Then my friends are able to have some alone time.”
I feel an argument brewing. I say what an exceptional son Dennis is and how his devotion to Patricia is unusual in a person in his 20s.
“Yes,” Patricia says. “Yes, he is a good son.” •
“The only advice I have for new dialysis patients is to trust in God and trust in your doctor,” Patricia remarks. “There is nothing you can do to change your situation, so just hope that everyone knows what they are doing and hope that God will guide you all through it.”
Dennis pipes in, “And ask a lot of questions.”
The next patient I interview is Patrick Geske. He is 24 years old. When I meet Patrick early in 1997 at the dialysis unit, I’m told we can speak for only 15 minutes, the time allowed visitors. The first thing I notice about Patrick are his eyes. Patrick’s large brown eyes seem to bulge, and the whites have a yellow hint to them. He sits in a vinyl chair, his arm attached to the softly whirring dialysis machine by two plastic tubes that are dark with his blood.
Patrick, like me, was born in the Philippines but raised in the United States. Since I am from Boston, where the Filipino-American community is tiny, I am excited to meet another Filipino-American. So I try to greet him in Tagalog (or Pilipino, which, besides English, is the official language of the Philippines), but we are both rusty in the language and laugh it off.
I catch Patrick at the end of his dialysis session; he is energetic and alert. Later, Patrick tells me that sometimes he feels very sick after dialysis. Patrick has an athlete’s build, his sinewy muscles more characteristic of a runner than of the high school football player he once was.
His fiancee, Abigail, also Filipino, tells me she had to trick Patrick into going to the doctor’s, where he was diagnosed with renal failure in July 1995. She had noticed a dramatic weight loss in Patrick after their mutual friend, who had been living with them, died.
“My friend had bone cancer, and they thought they got it out, but it had spread to his lungs and he died,” Patrick remembers. “And I didn’t know that cancer wasn’t contagious, and he had been living with us before he passed away. So here I am thinking I have cancer. When I was first in the hospital, my family was scared because they thought my friend wanted me with him, was trying to take me to wherever he was on the other side.
“I was showing no signs,” Patrick recounts. “If it wasn’t for Abby.. .she was telling me I was losing weight and I said, ‘No, I’m not.’ I was very much in denial. I he only time I felt sick was at night. I would have a fever, but in the mornings I would be rejuvenated and strong again. So I just tried to ignore those nightly fevers.
“But then I got curious, and finally I went to weigh myself. I saw I had lost 40 pounds since the last time I had gotten on a scale.”
Because he’d saved up some money, Patrick had quit his job as a slot-machine repair technician at a San Diego casino to spend time with his best friend, planning to return to work after his friend passed away. Patrick became sick 30 days after leaving his job, which meant he did not have health insurance. “I didn’t realize that the insurance covered you only for 30 days,” Patrick says, “so it had cut out on me when I was sick. I had to apply for medical help. Luckily, I’ve been working ever since I was 16 years old, and I was making enough to qualify for state coverage.”
When the doctor got the results from the tests he’d run, he checked Patrick into the hospital the same day. “The doctor, when he got the test results back, kept on staring at me and asking, ‘Are you sure you’re all right?’ I said, ‘Yeah, I’m fine. I drove myself here and went jogging yesterday.’ And the doctor said, ‘It’s hard to tell you this because you are so healthy, but technically you shouldn’t even be walking around.’
“He was shocked my body was letting me walk around. My blood was so toxicated, the level was so high, I should have been in a coma. I could have died. The doctors said within two or three days, if I had went to sleep, my blood toxicity levels were so high there could have been a possibility that I would have went to sleep and never woken up.”
When Patrick was diagnosed with acute renal failure, doctors hoped that his kidneys would begin to work again. He doesn’t have diabetes or a family history of renal failure. His medical team was puzzled, speculating that a viral infection had destroyed his kidneys. After further testing, doctors told Patrick that his kidneys had permanently shut down and he would have to rely on dialysis to maintain his health. Family members and Abigail offered to donate a kidney for transplant, but Patrick wanted to see how he fared on dialysis first.
“I wanted to give dialysis a try before I took the risk of transplant. I had to see how it went before I could feel comfortable subjecting a loved one to the surgery. And it wasn’t that bad. I knew dialysis was keeping me alive so I couldn’t complain. It was just something I had to do.
“Under the government, I am considered a handicapped person. I can go and get a handicapped placard because I am considered disabled,” Patrick says, smiling. “But of course I don’t.”
Patrick was assigned a team of medical professionals and a social worker. “My social worker is great. She actually went with me to the Social Security office to figure out what was going on with my benefits under Medicare. The first time I applied for medical help they lost my paperwork, and then three more times I had to apply and they lost my paperwork. I didn’t get approved for dialysis benefits until this past Christmas 1996, and I have been on dialysis for almost two years.”
The 1972 amendments to the Social Security Act extended Medicare benefits to people with end-stage renal disease, covering treatments such as kidney transplants, drug treatments, hospitalization, and dialysis. Paul Eggers, senior research analyst for the Health Care Financing Administration, estimates that kidney dialysis costs about $45,000 per patient per year. According to Eggers, transplant surgery also costs about $45,000, plus an additional $5000 in associated physician costs. Eggers stresses, however, that 20 percent of transplants fail in the first year, and the patient returns to dialysis. In the first few years following surgery, transplants cost more on average per year than dialysis, but after the third or fourth year, transplant becomes the more cost-effective treatment.
Patrick set aside three mornings a week to dialyze. The rest of the day was spent recovering from the nausea and fatigue.
“They tell you you should feel stronger after you are dialyzed,” Patrick says, “but 1 feel weaker.”
About a year after first being dialyzed, Patrick began to exercise again. “I used to bench press 305 [pounds), but now I can only do 150,” Patrick says.
Patrick’s weight chart looks like a roller coaster. “Before I was sick I was 160 (pounds], and when I was weighed in at the hospital I was 119. When I left the hospital that first time, I was 130.
“Now I have to be really aware of my weight and watch it. They call it dry weight. I will go in for a treatment and weigh in at 160 and come back two days later and weigh 165. During dialysis, they try to get me to my dry weight and that is when I get sick. I feel dehydrated and I cramp up.
“Both physically and mentally, I notice a difference in myself. I checked into the hospital at 5 foot 8 and left at 5 foot 7.5 inches. So I shrunk.
“Also, I’ll say something, and ten minutes later I will forget I said it. That’s frustrating because everyone will say, ‘You just said that.’ And I won’t remember. When I get a thought, I tell myself at that moment to remember it, but then I don’t.
“I learned so much from my best friend. He was always telling me things because he knew he was about to die. He really wanted to live and he would drag me to church with him to pray to God to let him live. If it wasn’t for him and Abby, I wouldn’t be this strong about my illness.
“My friend and I would be hanging out and he would say, ‘Hear that? Those birds sound so beautiful.’ I hadn’t even noticed the sound that was always there in the background.
“But when I was in the hospital that first time and I found out how lucky I was to be alive, I would open up the curtains and instead of seeing smog, I would sec the beautiful blue sky. It was the most beautiful sight I had ever seen, even though it was the same setting, the same sun, birds, view, and buildings that I have seen for a lot of my life. But for some reason, that morning it was like seeing it for the first time. Everything was more beautiful to me from then on.”
Right before Patrick became ill, he and Abigail had gone to Las Vegas to get married.
“My friend was going to be the best man,” Patrick says. "We had the money, and we went to Vegas to get married, but we saw the longest roller coaster in the world and an animal park, and my friend had never been on a roller coaster before or seen many animals. He was 20 years old and had never been on a roller coaster. So we didn’t have any money left over to get married.” Patrick laughs. “And the chapel didn’t take checks.”
“She,” Patrick says pointing to Abigail, “is the biggest part of my life. She quit her job to be with me in the hospital And while I was there, she didn’t treat me like I was sick. Even now, she treats me the same as before I was sick. If I ask her to get me something, she’ll say, ‘No, you can get it yourself.’ She doesn’t baby me.
“She’s strong about everything. Dialysis affects my moods. I have bad mood swings. If I have a bad day on dialysis, I’ll feel really awful and be awful acting and Abby puts up with me. She makes me strong.”
In April 1997, after two years on dialysis, Patrick decided to accept the donation of a kidney from his sister Tammie, a 22-year-old loan officer.
A kidney transplant operation takes about three hours. The new kidney is inserted in the lower abdomen and the vessels of the new kidney are attached to the recipient’s body. The patient’s kidneys usually are left inside the body unless they pose a threat of infection. Urine production can start within five minutes after blood flow begins to the kidney. According to UCSD, the risk to the donor is the same as for any surgery, but as donors are in good health, pain and risk are minimal. Most donors return to active lives in six to eight weeks.
When I see Patrick four months after his transplant and seven months after we first met, I note that the yellow tinge in his eyes is gone. He looks happy and relaxed, and although he was that way when I first met him, there is a new peace to his manner.
Patrick is on anti-rejection medications and steroids. The steroids have caused his face to break out, but instead of the anticipated weight gain and bloating, he has lost weight.
Patrick tells me about April 16, the transplant date.
“We [Tammie and Patrick] went into the operating room together, and even though we had gone through all the tests and Tammie matched four out of six of the blood tests and tissue typing, I wanted to back out. But Tammie looked at me from the stretcher and she caught my eye. She said, 'Kuya [Pilipino for brother], we’re doing this.’
“And she was so confident and sure that I felt not as scared anymore. If she hadn’t said that, I would have backed out. I didn’t want to put her through this major surgery and health risk. I didn’t want to put anyone through that.”
After the surgery, Patrick says he “felt great and wanted to get up and walk around. The doctors were so surprised to see me up and walking even before my sister.” The kidney began functioning immediately.
“When my kidneys first failed, I was still urinating,” Patrick says. “But it was only a little and the doctors said that my kidneys weren’t doing their job. But after this transplant. I’m fine. I didn’t need to get dialysis right after surgery like some people because my sister’s kidney was working so well for me.
“It’s funny. The doctor said that I might feel some of the things that Tammie feels. I didn’t really understand what they meant at first. But I love sweets and Tammie doesn’t: So when I was in my hospital room after the transplant, everyone gave me gifts of candies and sweets. And I didn’t even want it. I had totally lost that craving for sweets and sugar. Which is good, it’s healthier that way for me.
'Tammie and I have always been close, we are so close in age and all. We’ve always had a connection and would finish each other’s sentences and sometimes show up places wearing the same color. It is kind of like how identical twins are. But the candy thing was so strange.”
Because of complications, Tammie stayed in the hospital a day longer than Patrick. She returned to work three weeks after the surgery and says she doesn’t feel any different without her kidney. When the swelling and soreness diminish, Tammie wants to feel the spot where surgeons cut out a piece of rib to get to her kidney.
“I have to get used to these new meds,” Patrick says. “Especially the immune-system suppressors. They make me feel really irritable and short-tempered.”
“Yes,” Abigail agrees. Because Tammie’s kidney is a foreign object in Patrick’s body, his immune system will try to fight it. Therefore, he must take immunosuppressive medications all his life. This means that Patrick has to be careful not to pick up germs from other people.
“I really have to control my mood on these meds,” Patrick says. “Abby doesn’t have to deal with this, any of it, and yet she does. She is really unbelievable.”
Patrick’s attitude toward dialysis has changed too.
“Like I said in January, dialysis wasn’t really a big deal for me. But now I realize how much time it took out of my life, and I like not getting stuck with needles every other day. Sometimes when I would sit there being dialyzed, I would wonder when this would all end and if this is what I had to look forward to for the rest of my life. But I would try to have a good attitude about it. And now I have my life back; I have time to make plans and go on trips. I know you can go on trips as a dialysis patient, but the planning has to be far in advance.
“Now Abby and I can just take off and go camping or something,” says Patrick. “I should be able to return to work in a year, so I have that to look forward to also. Actually, the next thing Abby and I plan to do is get married. We want to get married, maybe in Laughlin or Vegas, and start having kids in the next couple of years.”
“Bring enough cash this time,” I joke.
Grace Talusan is in the M.F.A. program in fiction at the University of California, Irvine.
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