The day was ending and the road narrowing……I was in deep water and fierce fire…..and then…. a gift of life
On Aug 10 2018 a brave soul left this mortal plane. Before his passing, he donated a kidney to someone he will never know. The recipient will never be able to say thank-you in person. I was that recipient.
A gift of a kideny comes with endless kindness from the nurses, doctors, specialist, surgeons, friends, my wife, to all Thank you, I am forever grateful.
My Totally Awesome Kidney Adventure
I am in the process of removing the PDF version of the story chapters 3 thru 7 can be found here. This is about 40 pages in 5 articles
Kidney Transplant primer; a few things you need to know. Everything from Chronic EBV to PTLD has a Wikipedia article about it and can be found here in one convenient spot
Informed Consent; decisions about your treatment require informed consent. My experience making a decision on the side of the road is described here.
Exceptional Distribution Kidney (EDK) is a euphemism for exceptionally bad kidney, that tale can be found here. My frustrations with my EDK have inspired poetry, bad poetry, but poetry none the less. You can avoid my poem “frustration” by never clicking here.
A kidney transplant is better than dialysis. But with costs. After a kidney transplant you have a chance at a normal life for a few years. Typically 80% of transplants are lasting between 5 to 15 years today. Its getting better all the time. Dialysis sucks in comparison. Given the choice I would go for a transplant any day of the week.
Medicine as Applied Science or Art Doctors who unfathomably see Medicine as an art, or who accept alternative wisdom should be avoided like the plagues they propagate. For an explanation read this article by the Sceptical Doctor. Harriet Hall M.D.
Studies and Capability Maturity studies and peer review are process that are fraught with difficulties. Be sceptical of one study about anything, reviews of many studies are better. To get a handle on the extent of the problem go here.
Follow this link in regards to studies
Look for doctors who understand science and hospitals that understand Capability Maturity and Process control.
Lower Mortality is achieved with a kidney transplant compared with remaining on dialysis. The adjusted hazard ratio was 0.40, that means if the risk was 1/100 of dying on the wait list after transplant it became .4/100 or 1/250, much better.
#1 Transplant Outcomes are very location dependent, but overall the benefit of transplantation remains highly significant over dialysis. The cold reality is that it depends on where you get the transplant done and the attention to detail of the team. More details in this study.
#2 Examine the assumption: Getting a kidney has a negative hazard ration of 0.4, changing the risk of dying from 1/100 to 1/250.
#3 Cancer is a real danger When you go on and then off anti rejection drugs, the risk of cancer goes up while you are on them and then drops off after you reject the kidney. Follow this to see just how much anti rejection drugs correlate to cancer
#4 EBV and PTLD doctors gambling with my life. Having the transplant with no regard for my EBV serology gave me a hazard ratio of 7 changing my lifetime risk of getting cancer from 1/417 to 1/19. The risk of being given Epstein Barr Virus (EBV) and then being put on immune suppressants is outlined here. This can lead to early and late onset PTLD which is explained here.
#5 The recommendations the doctors at the Ottawa General ignored can be found here, thats not fair, a better to tell a fable, you see they took a chance, a chance where they were the chicken and I was the pig.
The fable of the Chicken and the Pig is used to illustrate the risks the doctors took on my behalf:
~A Pig and a Chicken are walking down the road.
~The Chicken says: “Hey Pig, we should open a restaurant!”
~Pig replies: “Hm, maybe, what would we call it?”
~The Chicken responds: “How about ‘ham-n-eggs’?”
~The Pig thinks for a moment and says: “No thanks. I’d be committed, but you’d only be involved.”
So yes the doctors took a chance but I am the one committed.
A 2022 survey of what can be done about EBV and PTLD can be found here
Immunomodulatory effects of arginine butyrate
the overall effects of butyrate salts on different immune functions are somewhat reminiscent of that of interferon. It is likely that these immune effects contribute, at least in part, to explain its antitumor properties observed in grafted tumorsWorks with
Questions about my immediate situation can be found here
Questions about the EBV Serology mix-up can be found here
Questions about PTLD and NHL can be found here
Editing beyond this point~Time for bed
Follow this link to side of the road