“There’s been a mistake. That can’t be my lab reports. I don’t feel that bad.” Those were my husband’s first words upon learning from his primary care physician that his kidneys had failed. He was still stunned as much from the lack of warning as from his physician’s announcement as he drove himself to a nearby hospital.
Planning for a serious chronic illness requires a Herculean effort when it comes to the financial resources of the average family, and such planning would downright deny one’s faith in most religious and social circles. Nor could such planning ever be comprehensive for it is all the hidden costs in coping with chronic disease that so easily catches one off-guard. It can certainly defy the desire to have a positive outlook on life. Yet, coping with a serious chronic illness, as my family does, could become the circumstance of fellow citizens’ families at any time.
Since simply being an American pre-disposes some to optimism, I find it highly unlikely that anything less than a national health care plan will ever deliver the fundamental care necessary for the citizenry and for a healthy economy. This has compelled me to write the following articles merely from the perspective of one patient’s family. I am not a health-care professional and have no plans to become such. I have been a self-employed, small business entrepreneur with my husband for more than twenty years who simply had the more recent opportunity to observe health care’s strengths and challenges, as they applied to us. This disease brought along with it, the additional opportunity to observe a small number of dedicated and competent individuals who serve on the front lines of care delivery-the majority of whom deserve my tremendous respect.
Part One: Analyzing Dis-ease
We had no early warning signals of my husband’s end-stage-renal-disease (ESRD). Still, we were more fortunate than most. At 45 years young, and as a self-employed, independent contractor of consulting and technical services to companies from the Fortune 100 to start-ups, life was very promising. My husband was working on a contract at a Fortune 100 company at the time of his diagnosis. He missed exactly one day of work throughout the time he was there, and on that particular day he was in the hospital.
A few years earlier my husband and I had produced a series of three internationally best-selling non-fiction books. Not yet turning 50 (the age at which we determined would be most prudent to purchase any one of a number of inadequate disability insurance plans) and practicing a very healthy lifestyle, we had no reason to suspect that either of us would ever become so perilously ill without warning.
No medical professional has been able to definitively determine the cause of my husband’s renal failure. I have come to wonder if it was not most likely the result of a root canal that ultimately harbored bacteria that subsequently attacked his kidneys. He certainly never recovered after the root canal. Had it not been for the quick and concerted action on the part of our primary care physician, my husband would likely be dead. We most definitely did not have any complaints with our health care delivery, but our interaction with a larger system, thus far, had also been minimal. There is nothing, however, like dealing with death on a daily basis to focus one’s priorities and resources-and politics.
During my husband’s very first dialysis run (dialysis is a machine-based, blood-cleansing treatment for kidney failure patients) a patient-care technician ran an unwashed, ungloved hand over my husband’s catheter incision. Being already emotionally and physically distracted, the chill that went up my spine at that moment was purely intuitive. Within a relatively short time, my husband’s catheter line had become so infected that he became septic and nearly died on a Saturday night-yet returned to work Monday morning.
Was the technician careless from being overworked, was a lack of training to blame, or was this simply a common occurrence? I don’t really know. I just know that the risk is too great to be complacent about the matter. But my frustration and hurt with a profit-based health care delivery system out of control began on that very first night-and long before I ever recognized the results of the technician’s error.
Upon observing the interactions between the dialysis center’s staff and my husband at his very first session, I was shocked to observe that he was being treated as if he had done something “wrong.” The staff was conducting what were surely routine procedures with every dialysis patient, but the attitudes and annoyed tones of voice I observed among the dialysis staff completely destroyed any notions I had of a just and fair health care system. I was also informed that it was “best” for patients if family were not present in the facility, despite my husband’s clear and persistent indication that he preferred the presence of family.
When we returned home, I locked myself in the lavatory to cry, out of my husband’s sight, over the insensitivities I had just witnessed. He had enough to cope with himself, being barely able to hold up the weight of his own head due to the sudden rise and fall of his blood pressure. He didn’t need the additional burden of my emotional trauma.
Imagine my horror a few weeks later when I learned that the director of the dialysis center had been recruited from the penal system. I have since come to see how a corporate mindset among providers of dialysis services would most certainly be readily attracted to personnel formerly associated with a penal system-a system that sometimes not only employs inhumane procedures, its clients are treated as criminals. Perhaps there exists some subliminal assumption on the part of the public that just such reactions to patients might multiply in a universal health care system.
As for a former warden’s duties, coping with vulnerable children and adults rather than deviants is a huge improvement in working conditions, likely resulting in less pay than in the penal system. And, you see, our society has begun to make it a crime of a strange sort to become ill. This departure in attitude in our society was even more recently brought home to us by an individual attending a progressive political party’s seasonal meeting who stated directly to my husband, “We spend far too much on health care in this country. Take dialysis, for instance….”
We were more fortunate than some kidney patients might have been that first dialysis session; a friend, a nurse practitioner, with dialysis experience accompanied us. Had our accompanying practitioner not brought it to a dialysis technician’s attention that they were about to implement the wrong potassium bath for my husband’s dialyzer, his heart could have stopped during that very first dialysis run. The technician’s response was that the wrong bath was the only bath they had. Mind you, this dialysis session had been scheduled weeks ahead of time. We moved from that dialysis center (and its nephrologists) as quickly as possible, and upon the recommendation of the practitioner-noting that our pet’s veterinarian kept cleaner floors and smocks than did that dialysis center.
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