I’ll tell my story, as much as I post I don’t think I’ve told this.
I graduated from college in 1985 and spent the summer backpacking in the Cascades; moved to Seattle in September and began to interview for my first post college job. I had graduated with good grades with concurrent business degrees and had a good work history. Three or five interviews into the process I received word that my Dad had died suddenly of a heart attack - he was the senior executive at a meeting in Boston and appeared to fall asleep, no one had the guts to try to wake him.
I spent three weeks in Chicago for the funeral and its aftermath before deciding to return to Seattle by train at the end of October. In the ‘60s I had gone with my Dad to business meetings in New York by trains - my first real travel experience. Back then, in the ’60s/’70s I had to wear a tie every time I traveled, first by train then later in the ‘70s I use to have to wear a tie when I flew. I was a miniature businessman in training. Anyway I drank the train dry of scotch by the time I got back to Seattle. The very next morning I woke up with swollen ankles.
Now after all these years I think I had declining kidney function for about a year at least if not five (the initial trigger could be the abscessed appendix when I was 16) but at the time I just had swollen ankles, how bizarre I thought. I entered the medical system later that day after catching a movie with my college roommate - [strike]Predator[/strike] Commando- and drinking a few beers. For two and half years I rode a roller coaster of hope and despair, it seemed I always ended up on the wrong side of 9 to 1 odds.
I had good docs and bad. I tried to go around the world before turning back in Thailand after a 24 day bout of amoebic dysentery in Nepal. After two months of hard travel and three days in a coma my creatinine had gone from 4.1 to 3.3 but in the end I only had about a year until I needed a transplant or dialysis. In my mind dialysis never entered into the equation.
My oldest brother came out to Seattle in the summer of 1988 and the third week of July gave me one of his kidneys. It started right up but I had woken up during the operation and was told I caused a complication. They went back in two days later and stopped the bleeding but there was nerve damage and it was a year before I had any feeling in my right thigh and three years before I could walk somewhat normally - the nerve eventually grew back. My right thigh was noticeably smaller until about four years ago.
The kidney rejected after the second operation but after OKT3 “therapy” it settled down. I don’t know if they still use OKT3, when I took it gave me what felt like the flu in the process of saving the kidney. I remember one night when I had a fever and they had to use what I called the “anti blanket” (like a water blanket circulating cold water) to try to cool me down. It worked though and I went home.
For a time I followed my blood numbers like an over extended stock trader following the Dow. My creatinine bounced between 1 and 2. My right leg would buckle unless it was reinforced by me gripping my thigh, replacing my upper leg with my arm but at least I was home.
After a couple of biopsies I got my first explanation/introduction to FSGS. Still I just did not believe I was going on dialysis - I spent the next 22 months in denial, with a little travel mixed in. Even having the fistula placed in May of 1990 didn’t get my attention.
It was in September after my first dialysis treatment that I came to understand that, baring a medical advance, I would need dialysis for the duration. I started dialysis in the hospital (because that’s what they did in 1990, at least here in Seattle) my fistula was used because it had matured, a highly skilled nurse did the cannulation, my Nephrologist was there and I wasn’t deathly ill. I still produced about a liter of urine a day - I didn’t need much fluid removed that first year and I had some function into 1994.
After one or two runs in the hospital (I wish I had journaled then, these details are a bit fuzzy. It’s just been in the last couple days, after this thread started that I’ve gone over that period in my head). The brief hospital stay I began dialysis in the Northwest Kidney Centers Patient Education unit.
Back then all new dialyzors started incenter dialysis in a special unit adjacent to the Home Hemo/PD training units (now dialyzors start at one of three or four training units). The NKC Patient Education Unit features individual rooms and pretty much one on one care when you figure that members of the care team - Nephrologist, social worker, dietitian - stopped by each day. Also since NKC is the first dialysis provider in the world the staff were then and are now some of the most experienced in the world. They tried to talk to me about home (they being the staff including Dr. Chris Blagg) but I was not receptive at all. Usually NKC keeps people in the training unit for just three to six runs but they kept me there from September to December. I was an angry person at that point, not at all fun to be around.
But the staff were patient and let me be mad while trying to convince me to accommodate the situation. I don’t think you could design a better or more holistic process but it didn’t change how mad I was. However, I do not think my outcome would have been the same starting through today’s corporate provider. That’s what motivates me to advocate.
It was about 5 months later when I learned to put in my own needles after taking my first trip as a dialyzor. I mark those two events - traveling and self cannulating - as the first milestones along what has stretched to be a 16 year long road of comparably gentle terrain. I wish everyone could have the same start that I did but I doubt that will ever be the case.