Becoming Me by David Rosenbloom
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Chapter 1 Six seasons in purgatory
In mid-April 2002, I was clearing brush on the steep hillside that composed much of my backyard. I liked getting out to work the land occasionally. It made me feel very Jeffersonian. It was an annual ritual done in the interest of fire prevention. And I was working with my longtime landscaper and friend Steve Bauer.
All of a sudden, I became very dizzy and faint. I told Steve that I needed to get some water and would be right back. I barely made it to the top of the hill, dragging myself the last ten feet onto level ground, where I collapsed, exhausted. I felt as though my heart was going to jump out of my body. I knew then that something was very wrong. The next day I made an appointment to see my family internist.
I had been slowing down of late. I had worked out regularly for years at a health club and prided myself on being able to run a 10-minute mile on the treadmill. However, I began developing pains in my legs and general tiredness. My health was declining precipitously. I had trouble eating and sleeping and was losing weight fast. My blood pressure was very high and I was heading for a massive heart attack.
Dr. Leon Partamian, my internist, ordered blood tests. The results were not good. He had seen me for my annual physical eight months earlier, and was concerned then that my creatinine, a marker for blood protein and an indicator of kidney health, had risen significantly. Now he made an appointment for me to see a very experienced nephrologist, Dr. Abdulah Abukurah. After an extensive interview and physical exam lasting over two hours, Dr. Abukurah solemnly but firmly announced, "Your kidneys have failed. You only have about 10-15% function remaining, and will need to be on dialysis the rest of your life."
A ton of bricks had just fallen on my head. I was prepared to hear I had a heart problems, but not kidney failure. It had the same effect as a death sentence. I got second and third opinions, all concurring, and within ten days was rushed into surgery to place a catheter in my chest and create a future blood access in my forearm called a fistula. Two days later, on June 21, 2002, I was in a clinic not far from home and placed on kidney dialysis three times a week for 3-4 hours per session. The kidneys are two amazing, fist-sized organs buried deep in your chest cavity, protected by your rib cage. In the order of life-giving function, they rate right up there with your heart, lungs and liver. Lose them and you are dead. They filter the blood in our bodies 24 hours a day, regulate blood pressure and heart rate, and control myriad other functions like vital hormone production. The underlying cause of why some of us develop kidney failure is still not known. Diabetes, heart disease, high blood pressure, genetic factors, trauma (car accidents, etc.) and old age are major contributors.
I had some family experience with kidney problems in my childhood, but never really understood the possible genetic ramifications until my own kidney failure. When I was about nine, my older brother Mike called me into the bathroom early one Sunday morning, and said, "Look at this. My urine is red." We looked at each other and I said, "We better wake up the folks and tell them."
He had nephritis, inflammation of the kidneys. It is often caused by infections, toxins, and auto-immune diseases. He was ordered to bed for several weeks by the doctor and recovered. He was very fortunate he did not lose his kidneys then. Later, when he was in his forties, he developed kidney stones but again recovered after passing them out of his system.
Until I lost my kidney many years later, I never made the connection that my problems could be genetic. I say kidney in the singular, because I only had one good kidney. Routine annual physicals and blood tests showed nothing abnormal, up until then. I didn't know I had hypertension, had developed End Stage Renal Disease (ESRD), and had been living my entire life on one kidney. The other kidney, we later learned through diagnostic tests, was shriveled and most likely useless from birth. And so I went into dialysis. Let me give you some background into kidney dialysis, a life-saving treatment which most Americans fear but know very little about unless they have a relative or close friend who has gone through it.
Dialysis, developed in the late 1940s, became accessible to everyone in the U.S. in 1972, when Congress added it to the Medicare insurance program as a major benefit. You didn't have to be of retirement age to qualify, just diagnosed with ESRD. Since then it has saved hundreds of thousands of lives, but at great cost, $3,000 per month or more. Today, there are over 400,000 Americans of all ages on dialysis, and dialysis treatment (all types) accounts for a third of total Medicare expenditure. Kidney disease is now at epidemic levels and growing. It is estimated that as many as 30% of Americans have high blood pressure and are candidates for some form of kidney disease. As a nation as a whole, we are over-weight, far too inactive and eat unbalanced diets. And the percentage of young people (those under 30) who develop either diabetes or kidney failure is growing at an alarming rate.
When I was first diagnosed, I was in shock and not fully aware of what was happening to me. The body I had successfully lived in and taken great care of for almost 60 years, was no longer mine. It belonged to some stranger. Within a month on dialysis, with my blood relatively free of toxins, I began to deal with the reality of spending the rest of my life tied to a mechanical kidney, feeling continually tired, and not being able to work nor eat or drink a normal diet. In essence, my life as I knew it appeared to be over.
Dialysis is not a cure. More than half of those who go on dialysis are dead within six years. The best form of treatment is a kidney transplant, either from a living relative or friend or a deceased organ donor. And there is no guarantee how long a transplant will last or when the body will reject it. Today, roughly 84,000 patients in the U.S. have been approved for and are waiting for a donor kidney. Yet the number of yearly transplants, both live and deceased, is only around 15,000. Today, the wait for a deceased donor can be as long as 7-10 years, depending on the region of the country in which you reside. The bigger the population in your region, the longer the wait. When I first went on the transplant list for a deceased donor kidney, I was told 5-7 years in Southern California. Of course, you always hope you will get lucky, and they will find a perfect match in less time. Stories abound about patients never needing dialysis and getting a kidney within a few months of being diagnosed. And of special treatment accorded to celebrities or the very rich. Some are true, most aren't. The national system for allocating deceased donor kidneys (United Network for Organ Sharing) is, I believe, run fairly and without prejudice.
Excerpt from Chapter 9