Tap dancing along the slippery slope to recovery

Before Dad’s hospitalization, his organs had been in pretty good working order. However, the aspiration and sepsis events impacted his kidneys, which resulted in his dependence on dialysis. To say that my father hated dialysis is an understatement. He hated the inconvenience of it, how it interfered with his ability to travel, and how much it tired him. In addition to the four-hour sessions that impacted his daily life, he also had issues with the dialysis center. Although the place was spacious and had nice dialysis beds, Dad’s opinion of the facility changed drastically when he moved from being a dialysis catheter patient to a fistula patient.

tappingCross1Because of the potential for infection, only RNs can work with dialysis catheter patients. However, techs are trained to hook up dialysis patients who have fistulas. My father quickly learned that not all techs are created equal. Dad had a problem with bleeding, which could be reduced or avoided if the tech took care when removing the needles at the end of the session. A couple of careless techs caused bleeding that the nurses at the dialysis center could not stop within 60 minutes, which was their threshold for calling 911. As you might expect, going to the emergency room significantly increased the time required to solve the problem. During one of Dad’s trips to the ER, the paramedics stopped the bleeding during the two-mile trip to the hospital, but because of their protocol, they still had to take him into the ER, and blood was drawn as part of the normal procedure (ironically, to ensure that he had not lost too much blood). If that wasn’t enough, my parents paid a $200 co-pay for the privilege of visiting the ER.

I generally heard repeated versions of Dad’s war stories during each phone call and visit to my parents’ house. I inherited many of Dad’s unfortunate circulatory traits, so I’m pretty sure the bleeding episodes would have also left me cold, if not bitter. It didn’t help that the decorum of the techs seemed a bit unprofessional and cavalier, and sometimes inappropriate. During my few visits to the dialysis center, I wondered if similar behavior by some of the techs might warrant a call to the Human Resources department.

tappingCross3Several years earlier, my mother had been the president of the Colorado Mesa University (CMU) foundation. Their annual meeting was scheduled for November 2017, and past presidents usually attended this meeting. Dad wanted Mom to attend, and he wanted to accompany her, which meant that he would need dialysis during their trip. CMU is located in Grand Junction, Colorado. Although Grand Junction and Temple are similar in size and population, I suspected that Grand Junction would not have a dialysis center that could match Temple’s. According to my parents, I couldn’t have been more wrong. Although it fell short in square footage, it whomped the Temple facility in the professionalism of its staff. When Dad asked one of their techs why they didn’t have chairs, she replied that she wouldn’t have had time to sit even if they had chairs. This environment contrasted sharply with that of the Temple facility.

I wasn’t surprised when Dad started needling Dr. Issac, his nephrologist, to test him to see if he still needed dialysis. Unlike most of the dialysis patients, Dad often had only the minimum amount of fluid removed during his dialysis session. Although Dad’s tests showed that he still required dialysis, Dad was able to convince Dr. Issac to reduce the time from 4 hours to 3-1/2 hours. Dad eventually got the doctor to reduce the time to 3 hours, which enabled him to get home before 11:00 A.M.

tappingCross2Because Dad received co-pay bills for physician visits to the dialysis center, he decided to take advantage of his VA benefits. Temple is near Fort Hood and has a large VA facility not far from my parents’ home. During Dad’s first visit to the VA’s nephrologist, that doctor allegedly told Dad that he didn’t think that Dad needed dialysis, which alarmed me. Dr. Issac had been treating Dad for two years, and this VA doctor had seen Dad for 15 minutes.

Now that Dad was convinced that the local dialysis center was less than stellar, he despised it more than ever and embraced the comments of the VA doctor. Armed with these convenient comments from the VA doctor, Dad was able to convince Dr. Issac to run another series of tests to check Dad’s need for dialysis. When reviewing the test results with Dad, Dr. Isaac said that Dad’s condition was borderline, and suggested that nephrology personnel closely follow Dad while he took diuretics. If the trial of diuretics worked, Dr. Issac would remove Dad from dialysis.

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For all intents and purposes, Dad had approximately three liters of fluid removed each week, which would still need to be removed. With my parents’ blessing, Dr. Issac called me to ensure that I understood his plan so that I would be knowledgeable enough to discuss the process with my parents. In short, the doctor wanted Dad to go to the dialysis center once a week for blood work, weigh-in, and blood pressure check to see how well the diuretics handled Dad’s excess fluid. Dr. Issac prescribed that Dad take three tablets daily. I don’t know what Dad expected, but the diuretic had an immediate effect. Dad said that there was no way that he would take three pills a day. As a matter of fact, he said that he might take only one pill a week.

tappingCross1Dad went to the dialysis center on December 11 for his first weekly checkup, and according to my parents, the results were fine. When the nurse tried to schedule another appointment for December 20, Dad said that he would not see any doctors during the Christmas holiday. I was disappointed because I had wanted to accompany him (and the doctor wanted me to accompany Dad) on this appointment. While I was visiting my parents during the Christmas holiday, someone from the Scott & White dialysis center called the house and scheduled a follow-up appointment for Dad on January 26, 2018. I was concerned about the significant interval between visits and the lack of supervision during this test, especially now that Dad was taking the diuretics on a haphazard basis.

On January 21, 2018, I emailed Dr. Issac and updated him on what my father had and had not been doing. I asked if he could revisit Dad’s prescription during Dad’s January 26 appointment so that Dad might be more inclined to take the pills. I wasn’t expecting a response from Dr. Issac, so I didn’t log on to Dad’s MyChart account to see if the doctor had replied.

tappingCross2Unfortunately, the doctor did reply to my email the next day stating that Dad did not have any appointments scheduled with physicians at Scott & White, and then he asked me who Dad was seeing. My parents learned about the non-existent appointment when they showed up at the dialysis center on January 26. They were so mad that they vowed never to return to the dialysis center or see Dr. Issac. I was also very upset, but for different reasons. Not only did I respect and like Dr. Issac, but it had also now been more than a month since Dad had started self-medicating without the knowledge of a physician. Worse still, the more that I encouraged him to take the pills, the more that he dug in his heels to do as he pleased. The more that he resisted taking the prescribed drugs, the more I worried that he was dancing too close to the edge.

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