Three years ago I received a kidney transplant from an anonymous donor. For me it was a gift of life. I was sick, my brain clouded by uremic poisons. My life a routine of dialysis every second day. The transplant a gift. I am forever grateful to the donor.
Three years and the kidney leaks protein into my urine, I suffer from metabolic acidosis because the kidney cannot regulate my bloods pH and my eGFR floats around 30 with a Creatine level while stable is high at about 200. The net effect is that my new kidney is dying. I am unable to function normally; I am half the person I used to be. It will probably die within a year if I am careful two.
Many would say I was lucky to get a kidney at all, and I was, but what I was sold was an “exceptional distribution kidney“. That is a funny turn of phrase. “Exceptional” it is an adjective, an adjective modifies a noun, the noun being kidney. Exceptional can mean well above average; extraordinary, or deviating widely from a norm, as in exceptionally bad, the third order of deviation from normal bad. I did not realize I was being offered an exceptionally bad kidney. It was offered and I clearly remember thinking “They are not going to do something to me that would hurt me.” I was wrong.
An exceptional distribution kidney is a high risk kidney. The problem was I was not a high risk dialysis patient. I was unhappy on dialysis to be sure but I was stable. I was blood type O, which means I can only match type O, limiting my potential donors. It is insisted this is why I was given a kidney that would increase my chances of getting a dangerous cancer.
But I was also told I had no antibody matching issues and was told that I was an antibody match for 1/3 kidneys that came thru the door.
And yet I was offered a sub standard kidney. The advice given by the doctor at the time contradicts all the abstracts I have reviewed.
The hospital measures and posts the activity of transplanting exceptional kidneys. Measuring an activity and not the performance of that activity is a crude quality management mistake. They are proud of the exceptional kidneys they transplant. They should be proud of the survival rate of their patients. Its like they waste nothing, except lives, they do the technically difficult, the heroic, but at whose expense? Mine.
What they do not measure is the outrageous waste of human life that is created when a “Standard Criteria” kidney which could last 20 years in a compliant patient verses an “Exceptional Distribution Kidney” as in my case that lasted just over 3 years.
One of the mistakes made was to give me a kidney that had a virus that now makes me not eligible for another donation. To understand the litany of errors you need to understand Capability Maturity you can find that article here.
This lack of clarity; calling a high risk kidney “exceptional” effectively killed me. Its not about being polite, its about my life, my wife of 42 years will be a widow, my grandchildren will loose their grandfather 10 years sooner.
So stop the bullshit; An exceptional kidney is substandard. Nice words hide that fact but the fact remains.
- My pot belly is not another kind of beauty.
- Velveeta is not cheese.
- Collateral Damage means small children dying in battle,
- Enhanced Interrogation is torture;
- “Shock and awe” was not entertainment but 2.4 million Iraqi deaths.
I am still grateful to the donor. My anger at being lied to by people I trusted is difficult, but its trivial compared to my disgusted with the complete lack of understanding of quality management I encounter in the hospital
Not being clear in language, candy coating the obvious for fear of offending the fat, the lazy and irresponsible is killing me. And that is not a metaphor, a figure of speech, or analogy.
The following warning comes from a different hospital. Note the Document control numbers, a title, a date, a revision. All characteristic of an organization that understands configuration control of documents. Configuration control of documents is a rudimentary first step in processs control that the Ottawa General Hospital does not understand.
Had I received a document like this, if I had been given accurate statistics about the dangers of EBV- patients reciveing an EBV+ kidney I would have waited for the next kidney.
Weird Sly Kip April 2022 Reflecting on why “None of us is as dumb as all of us”