After being at the dialysis unit for several weeks, I learned some things I considered unusual. The patients’ caretakers—their parents, spouses, children or church members— who brought them to dialysis for 6 a.m. or 11 a.m. treatment formed a social circle. They seemed to know each others’ families, church folks, and medical prognoses. They talked as if they were best friends. Statistically, black people are about 3.5 times more likely than whites to develop kidney disease. Diabetes is the leading cause of kidney failure at 38.4 percent and can lead to loss of toes, feet, fingers and limbs, and even blindness. I wasn’t a part of that dynamic. I was an otherwise healthy 36-year-old white woman with a business to manage. I did not want to be a part of this group who had accepted their curse. They would be bound to dialysis for three to four hours on Monday, Wednesday and Friday, or worse, Tuesday, Thursday and Saturday. Their lives were dictated by dialysis. These long-time patients knew people who had died while on dialysis and many patients knew their fate would be the same. I think I met one person who was on the transplant list. Some started dialysis when they were young. Others had family members who also were on dialysis. They seemed to find solace in the camaraderie. I thought of dialysis as doom. To associate with these sickly individuals was to accept a life-limiting diagnosis. I believed I was the exception. I had a kidney transplant in the works.
But I was simply one of 30 people sitting in a lobby waiting to be called to go back to the treatment area. Sometimes appointment times were on schedule, sometimes, not. If a patient had difficulty and stayed later, everyone with that tech started and ended later. Every day felt like a cattle call. We were all nameless numbers to be processed before the employees can go home. No matter how cheerfully the nurse greeted us, we all had the same diagnosis: renal failure. All of us must give up 15-20 hours a week to travel to and from dialysis and sit through treatment.
Many dialysis patients die from heart issues or pneumonia. Dialysis treatment stresses the heart, but most people don’t die from kidney disease if they are compliant with their dialysis “prescription”. The doctor “prescribes” how often and how long each dialysis treatment lasts and recommends appropriate diet, fluid gains, medicines and supplements. Although people seldom die FROM dialysis, they die while on dialysis. Abruptly ending dialysis generally results in a person swelling from fluid retention and suffocating in their own fluids. It is a horrible, painful way to die.
Other things amazed me. People were not compliant. I didn’t understand why because my parents valued discipline and respect. We honored our elders and visited the doctor regularly. Had it not been for a virus, my quickly advancing kidney disease would probably have advanced to full renal failure by the time I had an annual visit. (Give thanks in all things.) Most people in ESRD are aged 45 – 64, so statistically1, I was not a candidate for kidney failure. I followed the orders and recommendations of my nephrologists. Some patients didn’t limit food and drink intake as they were supposed to. One man came in after a weekend of drinking and was considerably over his dry weight. (Dry weight is the weight of someone not carrying excess fluid. A healthy person urinates to eliminate excess fluid. When the kidneys fail, the body does not eliminate fluid waste and retains the fluid in the bloodstream and tissues until it is removed with dialysis.) He gained about 10 kg over the weekend. That’s about 22 pounds. The high end of the goal is 3.6 kg or 8 pounds. That’s 32 – 40 oz. per day in drinks, ice cream, soup or any other liquid. The heart is not able to maintain the stress of pulling off 20 pounds of fluid in six hours. But this was apparently his routine.
Normal blood sugar levels before meals hover between 70 to 80 mg/dL. For some people, 60 is normal; for others, 90, according to WebMD. A woman with blood sugar levels in the 300s had phantom leg pains in her stump and requested Codene and Tylenol to relieve pain and allow sleep. She cried and screamed in pain until she got pain medicine. That did not make for a calm, palliative environment! Still others skip treatments and cut their dialysis short, which can cause illnesses and difficulty breathing.
Many older people filled the chairs beside me, and it seemed I never sat by the same person twice. I never felt comfortable there. I just wanted out. I really enjoyed the occasion when they had too many patients on a shift and I had to go in the (nice, quiet) isolation room. I was alone with my thoughts and a TV. The staff wasn’t fond of having to use the isolation room because it is restricted to infectious patients who must be kept away from the general population, so it had to be cleaned and sterilized beyond normal practice.
Some people arrived with drivers who stayed, some who left. Many came on public vans or in ambulances while bed-ridden. Whether we walked in or rolled in in wheel-chairs or gurneys, we weighed and had our temperatures taken when we were called back to the treatment room and before leaving. Weighing shows how much fluid was “pulled off”, and a higher temperature can indicate infection.
After all these years, I don’t understand why I had to go through this. I didn’t know in March 2007 how long I would be on dialysis. But I knew it was a means to an end. And I hoped my miracle was coming soon. With my prayers, and because of the prayers of those who loved me, I made it through, one day at a time. And my journey in dialysis continued.
If you or someone you care about is facing dialysis, please share your experiences and concerns. Thank you to Britt and Eli who have reached out. The comments section has some discussion, and I will discuss topics of concerns int he posts, too. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?
2 http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf This link has a helpful information sheet.