NDT Advance Access originally published online on November 3, 2006
Nephrology Dialysis Transplantation 2007 22(1):64-67; doi:10.1093/ndt/gfl612
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The nurse, mother of two and four transplants—Nancy Spaeth tells her story
8320 SE 34th Street, Mercer Island, Washington 98040, USA
Correspondence and offprint requests to: Nancy Spaeth, 8320 SE 34th Street, Mercer Island, Washington 98040, USA. Email: nspaeth{at}mindspring.com
I'm told I was a curious and active child. My family activities centred around my three brothers and my father. I learned to fish, shoot, play baseball, water ski and snow ski. I could not hold back or complain if I wanted to be included in the family activities. The males in the family had no time for that.
My mother provided a stoic example of sticking with something until it was done. My father always said to me, ‘Nancy, you can do anything if you want it badly enough.’ Other things he said were, ‘Don't carry a lazy man's load’ and ‘Save time by doing it right the first time.’ These examples have served me well over the years.
I had just started 7th grade in September 1959 when brushing my thick wavy blonde hair became difficult. I was a relay runner in school and races became hard to run. My urine became brown. The diagnosis was kidney disease. In that era doctors thought that jostling the kidneys would do further harm, so I was sent to bed until Christmas and only arose to use the bathroom.
In October, my friends gathered around my bed to celebrate my 12th birthday. It was one of the rare times I saw all my friends, as I was usually alone in the house while my mother was at work. I did my best to keep busy by reading Charles Dickens, Jules Verne and Nancy Drew mysteries.
On December 26, I entered Children's Hospital in Seattle for further diagnostic tests and treatment if needed. Biopsy showed that I had Bright's Disease or glomerulonephritis, as it is called now. The doctors felt the cause was multiple stings from a swarm of yellow jackets I had encountered the previous summer while on a camp hike in the Cascade Mountains. I was there for many weeks and given high doses of prednisone and then infused with nitrogen mustard to see if it would eradicate the disease. I was semi-conscious for several days following this. Eventually, I was awake enough to ask my mother to hold open my swollen eyes so that I could see her. Children visitors were not allowed in the hospital in those days, and I remember waving at my younger brother, Charlie, through the windows of the hospital.
I entered the 8th grade the following autumn and stayed active throughout junior and senior high school. I loved water skiing in the summers on my custom made slalom ski. At the age of 15, I won a first-place trophy snow skiing in a coed slalom race. As a girl competing with brothers while growing up, I never tired of saying, ‘I beat the boys.’ Back then I never worried or thought much about my illness, except to be careful of my diet and to follow the doctor's instructions. I always knew I felt better when I watched my salt intake. This was just my life.
In the fall of 1965, I went off to college at the University of Arizona in Tucson, joined the Pi Beta Phi sorority, worked at my studies, went to parties and dated the boys. By February 1966, I had become too sick to stay in school. Vomiting in the planter boxes outside of my physics class became old after a while. I returned home and continued college at the University of Washington, and then transferred to Seattle University, which was just three blocks from the Kidney Center. I also began my interviews with the Admissions and Policy Committee at the Seattle Artificial Kidney Center. We called it ‘The Life and Death Committee.’
All patients being reviewed for dialysis in Seattle, in those days, before Medicare paid for treatments, went through this process. It included a visit with a psychiatrist and psychological testing. My mother and older brothers had to meet with the social worker and the financial people. However, I did not know until recently that my family had to have adequate insurance coverage or put up $30 000. That is a lot of money today, not to mention how much it was in 1966. Luckily, my mom was a social worker for the state of Washington and had gotten double coverage with insurance, for this reason.
The committee was looking for people who could recover and go on to work or be contributing members of society. The Seattle Artificial Kidney Center was the first out-of-hospital dialysis centre in the world and it only had about two dozen dialysis beds. I believe the review process was harder on my family than it was on me, because they worried about the alternative. My sister-in-law reminded me that I might not be chosen but I was 18 and the implication of death never really occurred to me.
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I started dialysis the day after Christmas 1966, while continuing to be a full-time university student. I was active, went to parties with my friends, dated, and was a pretty normal student, except that I went to bed on dialysis three nights a week for 8 h and avoided salt at all cost. I took up snow skiing again, although I carried a tourniquet and cannula clamps with me on the hill. I had a Scribner shunt, an external Teflon and Silastic tubing connecting an artery and vein, located on my inner forearm where it was vulnerable to infection, clotting and being pulled out. I covered it with gauze to keep it warm and protected. We allowed the end junction to show, in order to keep an eye on the blood color and check for clotting. In June 1970, I graduated from Seattle University with a bachelor of education degree with minors in art and English.
I often volunteered for research studies, thinking that anything the doctors learned would benefit me as well as others. I was planning for the future, my future.
After 2 years of in-centre dialysis, in 1968, while still in college, I went to home dialysis training at The Coach House, where the University of Washington conducted research. I was taught to be a nurse and technician. Dr Belding Scribner, accompanied by Dr Joseph Eschbach and Dr Christopher Blagg, was there to oversee my health and training. It took 3 months for me to learn how to dialyse, repair the Drake-Willock machine and how to rebuild the Kiil dialyser, which I would be using in my home. We prepared a room in our basement with an old hospital bed for sleeping during overnight dialysis. On Sundays, my priority was to clean and rebuild the kidney. Dialysers today come ready to use, a big advance for patients. Mom and I eventually gave free room and board to a university student in exchange for helping me with the machine. My haematocrit hovered around 20–23 in those days and I had frequent blood transfusions. I still went on dates, but had to be home at night in time for dialysis.
It was during these years that Dr Scribner would occasionally call me, saying, ‘Nancy, are you free for dinner on Saturday? Well put on that black cocktail dress and come down about 6 o’clock. I have Xxxxxxx Corporation coming for dinner.’ On the appointed nights, I would don my sleeveless black dress and drive down the hill, cannulas on my left arm wrapped in Kerlix gauze. Ethel, Scrib's wife, would have the table set with two wine glasses at each place, and we were usually served a standing rib roast, no salt. Scrib, Ethel, sometimes one of Scrib's sons (Peter, Tom, or Rob), and I would entertain the gentlemen from the various Xxxxxxx corporations. In the two glasses were two different wines—one of his good ones and a cheap one from the local store. Scrib got great pleasure from seeing who could tell the good from the cheap. He would always praise me for being able to identify the high-quality wine. I was probably only able to do this because I rarely drank and had a young tongue.
Later, Ethel would go to the kitchen to clean up and Scrib would go up to bed. He always went to bed early because he arose quite early. He did his best thinking in the early hours of the morning. I would stay and visit, then explain the early-to-bed routine to the gentlemen. Usually, a week or so later Scrib would call me and say, ‘Nancy, we got the grant.’ The first time I went for dinner, I had no idea that it was for a fundraising mission!
In March 1972, during his spring break from college, I received a transplant from Charlie, my youngest brother. He returned to school at Stanford a week later. That summer, I married. My first child, Joshua was born in February 1974 at the University of Oklahoma. Sarah was born in August 1976 at the University of Washington. I still have a picture in my mind of Dr Henry Tenckhoff walking around my room, holding baby Sarah. They were beautiful, healthy babies, although born 4 and 3 weeks early. They are still beautiful and healthy today.
I worked while I was married because my husband was in school studying for a physician's assistant degree. After Sarah was born, I was a substitute teacher and taught kindergarten through 12th grade, all subjects. In 1979, I lost my transplant, due to food poisoning, and was divorced. Public schools were closing, and many teachers were out of work. I was unable to get a teaching job, so returned to school for a nursing degree, and dialysed with what was now called the Northwest Kidney Center. The centre was using a new, more efficient type of dialyzer that physicians thought would permit a shorter treatment schedule. I remember telling Dr Scribner that I did not feel as well using this new machine on a 4-h dialysis schedule. I also disliked taking time out of my day for treatments. I had preferred sleeping away my time during overnight dialysis, so that I would have my days free for school, work and my children. Fortunately, I soon received training for home haemodialysis. I liked managing my own life and not letting dialysis manage me. This time, the machine was small enough to keep in the kitchen where I could interact with my children and supervise dinner.
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My haematocrit hung around 15. I was getting fewer transfusions now, as a protection against HIV infection and in the hope that a low haematocrit would stimulate production of red blood cells. For that purpose I also received the male hormone, decadurobolin. Nothing seemed to work.
In 1981, I received a cadaveric transplant from a young woman who fell from a ladder on a fishing barge in Alaska and the following year I graduated from nursing school with a 3.9 GPA and went to work full time. When my transplant failed in 1986, I once again went on dialysis, for the standard 4 h during the day. My haematocrit again dropped to 15 and I felt much more tired from the anaemia than I had in the past. I soon opted for home haemodialysis, again in the kitchen. This time, however, the kitchen was in the house that I had built, acting as my own contractor. Still, the 4-h schedule was not enough dialysis to help me feel as well as I did when on overnight dialysis during the 1960s and early 1970s. Unfortunately, nephrologists no longer prescribed that type of overnight schedule.
My sister-in-law called me one morning, while I was resting, after having gotten the children off to school, and asked me what I was doing. ‘Becky,’ I said, ‘What can I do? My body has me in prison.’ Not long after, I was accepted into the erythropoetin study conducted by Dr Joseph Eschbach at the Northwest Kidney Center, and my haematocrit climbed to 40! Sarah no longer needed to keep coming into my room while I was napping to make sure that Mommy was okay. It is a frightening thing to have a sick Mommy.
The Food and Drug Administration eventually approved Epogen (erythropoetin) in 1989. Patients today have little knowledge of just how lucky they are to have this drug.
It was unbelievable how much better I felt. With erythropoietin I was able to spend more active time with my children, but because of that terrible four-hour dialysis schedule I still never felt well enough to work full time. In 1989 I received my third transplant, again a cadaveric kidney, this time due to a motor cycle accident.
I continued to substitute teach and do per diem nursing. For fun, I even tried a spin around Lake Washington on water skis. I made sure that my children learned to snow ski and I know that Josh has been grateful. It is his favourite sport today and he looks forward to it every fall when the rain begins. I returned to full-time nursing in 1993 at Virginia Mason Medical Center in the Physical Medicine and Rehabilitation Clinic. It was great to be bringing in a good paycheck again and have better medical coverage for doctor visits and medications.
In 1995, I lost my transplant to chronic rejection and returned, again, to dialysis. As terrible as it is to lose a transplant, I feel that trading off the side effects of dialysis for the side effects of the transplant drugs and vice versa, has contributed to my longevity. I continued to work in the clinic during this period and only took a week off for the placement of a Tenckhoff peritoneal catheter so I could start continuous ambulatory peritoneal dialysis (CAPD). The only accommodation I needed was an IV pole at home and in my office so that I could do an exchange while at work, and a microwave oven to warm the dialysate fluid to body temperature.
I did four exchanges of fluid a day and was amazed at how much better I liked peritoneal dialysis than haemodialysis. I had much more freedom, more consistency in the way I felt, and no more post-dialysis fatigue. It was easy to travel and my diet was much more normal. I did not lose weight and actually gained some! After 1 year, I increased to five exchanges a day. The Quantum machine did the fifth exchange at night while I slept. A timer on the machine automatically opened and closed the dialysis tubing.
During this time I continued to work, support my children, travel, and enjoy life and my family. I gardened, walked the dog, climbed stairs instead of using the elevator and I worked as a member of Life Options Rehabilitation Advisory Council, a group that supports education and rehabilitation for dialysis patients. I still serve on this council today.
In June 2000, I received that awaited call—another kidney had been found, a four-antigen match. Sarah stayed by my side until I recovered. She took me to my appointments, arranged for extra help and cried when Dr Cooper told us that part of the new kidney had necrosed, explaining to her that it meant that a portion had died. I am proud of her work ethic and commitment.
Today, my kidney is working well and I feel healthy. During a hike in the Wasatch Mountains of Utah I only had to stop once to catch my breath and remind my hiking companion that I live at sea level.
I continue to work at the same job and am thrilled that I have had the means to help my children with college. Josh is soon to be an assistant manager at Recreational Equipment, Inc. (REI). Sarah owns her own beauty salon and is a real estate agent. She has a degree from the University of Washington in comparative literature. I enjoy educating patients and renal professionals about the history of dialysis and rehabilitation for dialysis patients.
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I have learned over time how important it is to stay physically active, to maintain a good diet, take phosphate binders and to maintain a positive attitude. Above my desk, and on my refrigerator, I have a picture of a pelican eating a frog that is squeezing the bird's neck. The caption says: ‘Don't ever give up.’
I rarely needed antihypertensive medications, except during pre-dialysis, as I am faithful to the low-sodium diet, staying around 1500 mg per day. During the day I still do stretches and exercises taught to me by my physical therapist while I was on dialysis. They have served me well and kept me strong.
There is a lot of truth in the phrase ‘use it or lose it.’ The way to keep doing the things you love to do is to keep doing them. So I planned on doing a little snow skiing in the winter and was able to accomplish that goal. I went slalom skiing at Mt Baker, about an hour and a half east of Bellingham, Washington, with my son Josh, an expert skier, now. Josh would ski down the slope and wait for me as I wended my way down to him, stopping frequently to catch my breath. He would then ski down and wait for me, again. We did this for an hour or so. I finally said to him, ‘Oh honey, I’m so sorry you have to always wait for me.’ He said in return, ‘Oh no Mom, I don't mind.’ At the end of the day, he thanked me for skiing with him. I was really proud to be his mom. I am doing water aerobics in order to have more stamina.
All I ever wanted was a normal, decent life with children and the opportunity to give back to society at least as much as I have been given. I continue to strive toward that end.
I just came in from raking the leaves, carrying wood to the house, and walking my dog, Maggie, to edit what I have written here. I have to get busy now as my children are coming for dinner. What my father always told me has stayed with me all these years: ‘Nancy, you can do anything, if you want it badly enough.’
Life is a classroom, an adventure. You need to find something to work toward, to hope for. I am hoping for a PhD in Wisdom. I learn a little bit more every day.
A very special event happened on April 30th. My son, Josh, and his wife, Karen had a baby boy, Elijah James Pitts, a healthy 20 inches and 8 pounds, 8 ounces. It took me a week to recover from helping them by rocking the baby through the night, so they could get some sleep. I am quite amazed and feel blessed to have lived to hold my grandchild.
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Dr Scribner's Tribute to Nancy Spaeth |
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In addition to all the amazing accomplishments noted in the above section, I wish to add one episode that typifies Nancy's spirit.
Back in the 1960s we were developing a new artificial organ, which we called the ‘artificial gut’ and which later became known as home parenteral nutrition. This technique saves the lives of patients who have lost their intestinal function, just as RRT saves the lives of patients who have lost their kidney function.
A key step in the development of this method was the intravenous infusion of 50% dextrose solution, which, if undiluted by blood flowing past the tip of the infusion needle, would destroy the vein. This dilution was to be accomplished by infusing 50% dextrose into a side arm of an AV shunt.
Nancy volunteered to help test this procedure while she was working the evening shift on the admitting desk at Harborview emergency room. She stayed off dialysis two nights and fasted by not eating any foods or drinks except soda pop, alcohol, and hard candy, made with nothing but pure sugar. Sugar and alcohol did not make waste products that had to be removed by the kidneys. She was given a liter of 50% dextrose each day. Every other IV infusion contained alcohol for extra calories. Although Nancy did this for only a short time due to nausea caused by fasting, the procedure worked like a charm and we were on our way to the development of the artificial gut, a precursor to Parenteral Nutrition.
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More images can be found at NDT online.
Received for publication: 18. 6.06
Accepted in revised form: 20. 9.06
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