Life on the Road with ESRD
My long-term relationship with CKD began in 1982. I was 24 years old and living in Tucson, Arizona after having completed a 3-month cross country motorcycle trip with my partner, Ann, during that summer. We had run out of money and decided to find jobs, save money, and dream about our next adventures. We were young and carefree. We had both recently graduated from college and were hoping to see the world before we settled into careers and having children. After settling in with jobs and an apartment, I awoke one day in December of that year with a relentless headache that was not responding to the usual treatment of Tylenol. After 2 days hoping the “flu” would subside, Ann took me to a local clinic where they found that my blood pressure was running at 240/140. The doctor who examined me speculated that my kidneys were failing. Blood tests confirmed his diagnosis.
I was diagnosed with Idiopathic Glomerulonephritis. I was prescribed blood pressure meds and prednisone to help preserve whatever function I still possessed. Needless to say, we were shocked and devastated by the news. I had been healthy and active throughout my life until that point and couldn’t understand what had caused my kidneys to fail. Once I got over the shock, however, I recalled that a routine urine test when I was 22 had shown that there had been traces of blood found in my urine. Because I was young and feeling well, I did not follow up with doctors about that result. Like most young people, I felt invincible. I will never know if my kidney function could have been prolonged or if the decline could have been halted if I had acted differently and sought out medical advice. The lesson I have learned, in retrospect, is not to ignore even seemingly benign health issues.
The medications I was prescribed masked my symptoms and I was able to resume working but it was clear that we had to drastically change our plans. We had no health insurance in a state that was only beginning to implement the Medicaid program in 1982. We decided that we had to “get out of Dodge.” So, in the spring of 1983, we bought an old Arizona state police cruiser and a motorcycle trailer, hitched up the bike to the back of the car, threw our futon and clothes in the back seat and trunk, and headed north. Although Ann was from Watertown, Massachusetts and I was originally from Detroit, Michigan, we decided to try our luck in Chicago. Ann had spent a semester there on an urban studies program and had fallen in love with the city. We also had friends there and, importantly, knew that Chicago was the home of Cook County Hospital where I could receive affordable medical care.
When we arrived in Chicago, I went on welfare and received medical treatment at Cook County Hospital while on Medicaid. I experienced the appalling condition of the nation’s welfare and public health care system first-hand. On my first visit to the welfare office, I was given an 8:00 a.m. appointment like the dozens of other recipients in the waiting room. We sat for hours waiting for our names to be called to see a case worker. There was no effort to treat us with dignity or respect. No concept that we may have other things to do with our time, like perhaps, finding a job.
When I was finally called up to the front of the room, the person looking over my paperwork leaned in close and whispered that in the future, I should not wait, but come up to see her when I arrived. I was a college graduate, after all, and should not have to wait with everyone else. I was stunned to see my racial and class privilege so blatantly on display, and asked why another system could not be implemented where each person had a distinct appointment time, much like when one sees a doctor, dentist, or any other service provider. She hemmed and hawed and finally said that I would have to speak with her supervisor about that. The manager was busy so I never got the opportunity to confront him. I politely refused her offer to cut the line and took my place along with others on future visits. I knew that at some point in the future my privileges would free me from having to navigate this system, but wondered how many people with serious health and financial problems find themselves stuck in place.
I was admitted to Cook County Hospital in December of 1983 where I had AV fistula surgery performed to begin dialysis treatments. While the doctors and nurses in the hospital were superb, the facilities were falling apart. I was on a ward with seven other men. My bed was along a bank of large windows that had been installed when the public hospital was built in 1912. We were in the midst of a cold snap which Chicago is known for, and the cold seeped in through the windows. The hospital had run out of blankets so I spent the first night there curled up in a ball trying to stay warm under a sheet. Ann brought a blanket from home the next day which brought me warmth, but I felt terrible that the others on the ward did not have such luck.
For the following year, I went to a dialysis center three days a week to get my treatments. I had a hard time accepting that my kidneys had failed. I decided that I would not let this change my lifestyle. I rode my bike several miles to the dialysis center and often barely made it back home afterward, exhausted from a short ride that would have been no problem just a year before. Ann had to help me walk up to our second-floor apartment. It took me some time to learn how to adjust to my new reality.
While we were struggling together, we also decided to get married. So, we made plans to have a ceremony and party on the east coast where Ann had grown up. We were planning to get married on Martha’s Vineyard in June of 1984, but there was no dialysis facility on the island. The manager of the center, where I was receiving dialysis treatments in Chicago, learned of our desire to get married from the nurses who took care of me and agreed to let us take one of their machines with us if Ann would train on how to cannulate and carry out the treatments. So, she and I spent several weeks training to the point where we felt comfortable with the process. This was our first rodeo with home hemodialysis!
In mid-June, a week before the ceremony was to take place, we went to the center, picked up supplies needed for 2 weeks of dialysis treatments, and strapped the dialysis machine on top of our car. We carried out the treatments successfully, got married, honeymooned with the machine, and returned to Chicago. I still can’t believe that we were allowed to carry a dialysis machine on top of a car for a 1,000-mile trip. I can’t thank the folks at that clinic enough.
I never really adjusted to in-center dialysis well during the following year having experienced blood pressure fluctuations, cramping and other issues associated with dialysis treatments. I placed myself on several transplant lists in Illinois and Michigan, where I had grown up. In December of 1984, I received a call from the University of Michigan Transplant Center. They had a cadaveric kidney available for me. We packed a bag, hopped in our car, and were in Ann Arbor in 4 hours, where they whisked me into surgery.
When I awoke from sedation, I learned that the kidney I had received had not yet begun to work. My surgeons explained that sometimes it takes a while for the kidney to “wake up.” So, Ann and I waited, excited for my first urination in 1984. After several days, the kidney still did not function. Ann had to return to Chicago to work and came to visit me on weekends. I waited and waited. During that time, friends who lived in the area would visit me. We played cards in the common room, they snuck in alcohol (which I avoided), and we carried on as if everything were normal. My doctors also brought in cassette tapes with various artists since we shared an interest in music. During the days, the nursing staff would let me leave the hospital and I walked the streets, went out for lunch and to the movies, and visited the local bookstores. Since my sister worked at the hospital, she brought in journal articles on transplantation for me to read. I dove into these desperate to find out anything I could about my situation.
After one month, with still not a drop of urine, my doctors began to talk about the need to remove the kidney. I had been reading several articles about Cyclosporine, the new immunosuppressive drug I was taking, and found that it was also nephrotoxic. The dose was based on the weight of the patient and had to be carefully calibrated. On one of her visits, Ann took my chart off the door to my room and we examined my weight listed on the daily log and the dosage of Cyclosporine I was receiving. Ann realized that the dosage I was receiving was still based on my weight when I was admitted to the hospital. I had lost 13 pounds since my admission, and we wondered whether I was receiving too much Cyclosporine. We mentioned our concern to my surgeons who assured us that they had calculated the dose properly. Another week passed and I was informed that they would be removing the kidney in a couple of days. Having nothing to lose at that point, I decided to take half the dose of liquid Cyclosporine in the next morning without telling my nurses. On the second day of the lowered dose, my kidney began to work. I was peeing. I was ecstatic!
I told the doctors what I had done and was scolded for having done so. Nonetheless, they did adjust my dosage. I cannot say with any certainty that my actions had worked. It may have just been a coincidence that the kidney began to function at the same time that I cut the dose. The lesson I have taken away from this experience, however, is that patients and their caregivers have to be as knowledgeable as the doctors and nurses who are prescribing and providing care.
That transplant lasted 10 years. During that time, we decided to restart the lives we had put on hold for the previous year while I was on dialysis. Ann went back to graduate school in 1986 at the University of Chicago where she completed her Masters of Fine Arts in Teaching English and began her 33-year teaching career in 1988. She recently retired. I then enrolled in a graduate program in History at the University of Illinois at Chicago where I completed my Ph.D. in 1997. I worked as an adjunct professor at several universities while I was enrolled in the Ph.D. program and secured a tenured position upon graduation. I recently retired, too, after a 22-year teaching career at Oakton Community College.
During that 10-year period with the transplant, we continued take weeks-long motorcycle trips around the country and through Canada. Our teaching schedules afforded us time to travel during the summers and the transplant provided us with the opportunity to resume traveling as we had hoped to do when we embarked on that first trip in 1982. In 1988, we flew to West Germany, where we purchased a used BMW motorcycle and traveled throughout the Eastern bloc, from East Germany to Poland, Czechoslovakia and Yugoslavia, and finally from Italy to England. We flew back to Toronto along with our new motorcycle and resumed our lives in Chicago. We also travelled to Mexico, Jamaica and other countries and locations across the United States during this period of time. By 1990, we began planning to make a family. I was 32 years old and Ann was 30 and it had been 5 years post-transplant. Life was grand!
In 1992, our son Johnny was born. We focused our energies on raising our new son and carrying on with our careers. In December of 1994, however, the transplant failed. It had been showing signs of losing function for the previous year and so we had to prepare ourselves for another round of dialysis. This round of dialysis was a little more complicated. I was working on my dissertation, Ann was working full-time as a high school English teacher, and we were raising our son. It was not easy balancing all of these competing demands. Yet somehow we managed. I went to in-center dialysis three times a week, continued to work on my dissertation, and took care of Johnny. After several months on dialysis, my sister offered to be tested to see if she could donate a kidney for me. We found that she was an excellent match. So, in July of 1995 I received my second transplant at the University of Chicago. I will be forever grateful for her act of selflessness. She provided me with another opportunity to live my life to its fullest.
After the transplant, Ann and I decided to expand our family. Our daughter, Sophia, was born in April of 1997. We continued to focus our energies on our careers and children. We continued to travel, now with two children in tow. We had to travel by car, rather than by motorcycle. We crisscrossed the country and have taken our children to Mexico, Costa Rica, Argentina, New Zealand, and throughout Europe. They have inherited the travel bug and continue to travel with us and on their own now that they are in their twenties.
My second transplant began to show signs of wear and tear in 2018. I began to feel the effects of the slow decline by the end of that year, and we began to prepare ourselves for another round of dialysis. I was feeling weaker and finding that it was becoming a struggle to walk through the halls of the college and to walk around Mexico City during our trip with the family in December of that year. After consulting my nephrologist, I finally decided to resume dialysis in April of 2019. Now, however, I had the option of doing home hemodialysis. I had no qualms about doing so. After all, we had already dialyzed on our own in 1984. I spent several weeks training and then began dialyzing at home in May of 2019.
I am also listed for a potential third transplant, but I am not counting on it. I am 100% antibody sensitized, which means I would need to find a perfect match. Ann, my children, and 14 friends have been tested to see if they are a match, but none come close enough. So, we are coming to terms with the fact that I most likely will spend the rest of my life on dialysis. Doing home hemo, however, is allowing us to continue to pursue the lifestyle that we had been living during the previous 36 years.
Doing dialysis at home allows us to choose the times when we would like to dialyze. Now that we are both retired, we have the time and the energy (I feel much better, dare I say “normal” now that I am dialyzing) to go on long bike rides, take walks, and yes, travel. During the past almost 2 years now on home dialysis, we have been able to load up our car and drive to Michigan where we have a small home near Sleeping Bear Dunes. We spend weeks hiking, biking, swimming, and dialyzing. We have also taken road trips to upstate New York and flown out to California with my machine.
Our next adventure will be a 2-month long road trip to the southwest. We plan to drive down to Las Cruces, New Mexico and then wind our way through Arizona and California where we will visit our daughter now living in Oakland. We will get supplies shipped to us by NxStage along the way. NxStage makes it possible to travel almost anywhere—and we are excited to hit the road again.