Story by Will Chappell
I was diagnosed with Alport’s syndrome when I was 10 years old in 2001. Alport’s is a rare genetic condition whose sufferers lack one of the three layers of filtration in their kidneys.
This leads to kidney failure around the age of 20. When I was 21, my kidneys failed, and I started dialysis. After both of my parents were excluded from donation because of medical concerns, I settled in to wait for a deceased donor kidney.
Dialysis is awful. You choose between two modalities: hemodialysis where you go to a center three times a week to have your blood filtered by machines for three to four hours, or peritoneal dialysis, which you do daily at home. The latter uses fluid circulation in the abdominal cavity to remove toxins. I started on hemodialysis in Los Angeles, where I was living at the time, before switching to peritoneal dialysis for two years after moving back to Nashville. Later I switched back to hemodialysis for two years.
For the first two and a half years, I struggled with dialysis. The adjustment from having working kidneys to not is exceedingly difficult. In the first month of being on dialysis, I got a heart infection through a catheter in my carotid artery and had to self-administer IV antibiotics for six weeks. After a year on dialysis, I stopped urinating entirely. I never missed any treatments, but as my health deteriorated, I continued to live my life in the same way as I had before, which is
to say unhealthily. This led to dire consequences when, in 2014, I suffered chronic nausea so bad that I was hospitalized seven times in the first six months of the year. The doctors could never find anything wrong with me, an incredibly frustrating experience. But in the summer of that year, I switched back to hemodialysis and was determined to be a better patient.
I flipped a switch in my behavior. I started exercising, limiting my fluid intake and eating healthier. I realized that for me this was not simply a matter of prolonging my life on the back end but having a quality of life that was worth living in the moment. For the next two and a half years things went much better. Dialysis was still horrible, I had to have surgery on my neck to remove my parathyroids, I lost sensation in both my feet because of neuropathy, I broke my wrist two times in six months because of calcium seeping from my bones and I was chronically fatigued, but I was again able to do things like trivia nights, Predators games and bowling which made me happy.
Then, in June of 2017, I received a kidney donation at Vanderbilt University Medical Center. I swapped harrowing dialysis treatments for daily immunosuppressant medications and found myself with much more energy and time. Many of the side effects of dialysis lingered, like low bone density and neuropathy but things got much better. This trend didn’t hold true in 2019 though, as I broke my foot in five places and was hospitalized two separate times for a week, once for shingles (a side effect of a medication) and once for food poisoning. Then, in December, I learned I was suffering advanced hearing loss, another symptom of Alports. At the age of 28, I started wearing hearing aids. I
was in the worst shape I had been in since receiving my transplant heading into 2020.
Then the world turned upside down. I saw reports of a new virus wreaking havoc in a rural Chinese province in early January and began following the news closely, sensing potential implications half a world away. By early March, I knew that I would need to quarantine because of my immune compromised status and enjoyed a last few public outings before my impending hermitage. Then, I flipped the switch on my behaviors again. I began riding my bike on the trainer five times a week which has since increased to daily rides. I kept a structured routine, exercising first thing, attending remote classes and doing schoolwork and then working my political surveying job remotely in the evenings. I also began cooking more, eating healthier and playing pool on a regular basis with my parents.
Chronic illness and dialysis prepared me well for this experience. In addition to changes in my diet and exercise routines, I knew I needed to adapt mentally, too. After my parents were excluded from donating a kidney to me, I was listed on the national organ donor registry. For those unfamiliar, the registry matches patients on dialysis with the strongest matched kidney from donors across the country. The system is complex and wait times vary by locale, with the average wait time nationally being around the four to five years of Middle Tennessee. In cities like Los Angeles and New York, however, the wait time is eight to 10 years.
That’s a long time. But in addition to the duration there is a complete ignorance of what position you hold on the list. Until you get the call telling you
that you need to be at the hospital in two or three hours, you’re completely in the dark. Early on, I made a conscious decision not to think about life after dialysis. The day-to-day grind of dealing with the myriad health issues and treatments was difficult enough without fantasizing about the far-off day when I would be freed. To maintain my happiness, I made the best of a bad situation and accepted the things I could not change. At the beginning of the pandemic, I realized that it would similarly be years before I was able to return to a “normal” life and again flipped the switch.
From my vantage hunkered down, it was captivating to watch the rest of the world cope with an immutable situation. Everyone was forced to make major adjustments to their lives and for many it seemed to be the first time. Some handled it well, mounting Zoom happy hours and cheering medical workers, but many handled it petulantly. Demonstrations against masks, blatant flouting of public health orders and other misbehaviors became increasingly common and bold as spring turned to summer. To me, this response was completely bemusing. I’m not a very social person, so for me only being able to see my parents, who I live with, wasn’t a huge imposition. I was bemused by the perception of some that being unable to dine out or go out drinking was a violation of fundamental rights.
In addition to learning how to cope with these situations, dialysis gave me a lot of perspective. Not being in public is a nuisance but compared to being seriously sick in the hospital it is nothing. Laying in a hospital bed attached to a ventilator is the last place anyone should want to be. But for many people the
early morning nurses’ and doctors’ visits, annoyance of IVs and heart monitors, and hassle of seemingly endless tests and treatments are just an abstract concept. I long ago gave up the foolish notion that I was in anyway completely in control and learned to trust medical experts.
For a while, I did struggle though. As people began returning to normal activities last summer, I was frustrated. Seeing people do things that were out of the question for me brought back old feelings of envy for the able bodied. It also raised an acute awareness of peoples’ valuation of the safety of the compromised. I never expected people to remain quarantined as long as I would need to, but to see the massive parties, packed restaurants and widespread mask refusal and opposition long before any vaccine was available was disheartening.
The most difficult days of the pandemic came during the early stages of the rollout. As half of the country clamored to get a vaccine anyway they could, I was forced to deal with being disabled and society’s valuation of the disabled in a visceral way. I was and remain fully in favor of getting every citizen fully vaccinated, it is the only way to move past this pandemic. But during those early days, the devil was in the details. Who should get jabbed first after healthcare workers? Teachers? The elderly? The immune suppressed and compromised? I know I had a dog in the fight, but it was still difficult to watch the elderly and the teachers take precedence ahead of those at higher medical risk.
I don’t wish to place value on human lives, but that was exactly what was done. After a decade depending on a slew of machines, doctors, surgeries and
medications to prolong my life past an expiration date sometime in 2012, I am acutely aware of the fragility of my life. Even when I am doing well, exercising and eating right there’s always the shadow of a broken bone or unexpected bout of illness looming. The sad truth is that the kidney currently sustaining my life will fail someday, on average in 10 to 15 years. I will go through the whole process of dialysis and transplant again, barring major strides in artificial kidney technology. And I’ve accepted and incorporated all of that as best I know how.
But after almost a year of unprecedented pandemic. Of being told that I, and my cohort were at the highest risk of anyone, it hurt to not have that ethos extended to the vaccine rollout. There are lots of people over 65 who I love, and I have several teachers in my family and friend groups, but it was extremely challenging to see their lives categorically valued higher than my own. It brought out a lot of doubts and insecurities about my value in the eyes of society. It was the most disaffecting several months of my life.
As my eligibility date drew near, doubts arose as to the efficacy of the vaccines in patients with suppressed immune systems. This makes logical sense; the drugs I take every day suppress my immune systems response to prevent rejection of the transplanted kidney, but this also prevents response to most vaccines. Transplant patients are still encouraged to get vaccinated, but to continue to act with extreme caution as there is no way to know if they are protected. This brought the urgency of the situation down somewhat and helped me to move on, but I will not forget the experience.
I got my vaccine in March of 2021, and I’m still stuck in a state of limbo. I may have some protection from the coronavirus because of the vaccination, or I may not. The consequences of the latter are still dire enough that I’m continuing to remain cautious. This summer I went on a 10,000-mile road trip across the country, spending several weeks in Colorado and with a vaccinated friend in San Diego. I felt comfortable going bowling three times in the spring when case rates were low and have even eaten outside a handful of times at restaurants.
There is new hope on the horizon, as AstraZeneca has developed a new drug, Evusheld, which is designed to give immune compromised patients protection from Covid in six month increments. For now, supplies are scarce but at some point, in the next several months, I should be able to get a dose and return to something resembling a more normal life. I’m continuing coursework and my jobs remotely in the interim. I would never say that I was grateful for being chronically ill with end stage renal disease, but over the past two years I have been grateful for the tools I was forced to develop to deal with the situation. While it’s now clear that Covid will remain an endemic issue, I know that with evolving treatment options and the patience, adaptability and healthy habits I honed on dialysis I can live a happy and productive life regardless the status of the pandemic.
