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
Chapter 1: What is PKD?
Chapter 2: Family History
Chapter 3: Diagnosis
Chapter 4: Dialysis
Chapter 5: Transplant
Chapter 6 Recovery
Chapter 7: Drugs, lots of drugs
Chapter 8: Covid vaccine reaction?
Chapter 9: Pulmonary Embolism
Chapter 10: Quagmire
Chapter 11: Rejection
Chapter 12: Its getting better all the time
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; “alternative wisdom” comes in many forms and needs to avoided like the plagues they propagate. For an explanation of why I love my doctors and avoid the alternatives medicine read this article by the Sceptical Doctor. Harriet Hall M.D.
Studies and Capability Maturity studies and the peer review process are also fraught with difficulties. The difference of course is that traditional medicine gets better over time, alternatives wallow in nonsense. Be sceptical of one study about anything, reviews of many studies are better. To get a handle on the extent of the problem follow this link in regards to studies
An Engineering Study of Hospital Processes
My training is in Tooling Engineering, specifically Industrial Engineering. The job is about figuring out processes and systems that improve quality and productivity.
In my 40 years of working the field I audited hundreds of factories for compliance to a Capability Maturity model. So instinctively I audited the Ottawa General Hospital over my various stays. What I found is an organization that varies widely from one department to the next. The lowest status workers were highly controlled, but the doctors more or less free agents. This is a tragic problem. When I tried to discuss this with the staff I was labelled as having an anxiety disorder. Some doctors are particularity touchy about process.
My Kidney Transplant was perhaps the best or worst thing to ever happen to me, time will tell. To learn from mistakes made on me there are a few Things to Consider:
#1 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. But it is not that simple.
#2 Transplant Outcomes are very location dependent, but overall the benefit of transplantation remains 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.
#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. As the story goes, your not going to die from kidney failure but rather from cancer.
#4 EBV and PTLD gambling with my life.
#4.1 My transplant gave me EBV, and CAEBV
#4.2 The hazard ratio of an EBV+ kidney when I was EBV- has a hazard ratio of 7 changing my lifetime risk of getting cancer from 1/417 to 1/19.
#4.3 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.
#4.4 A few EBV PTLD Studies here.
#4.5 A 2022 survey of EBV and PTLD can be found here
#4.6 A few questions, a PTLD summary and a working group paper about EBV serology that is 20 years old can be found here
#5 Some Questions and Answers
#5.1 From a clinic visit in August 2022 can be found here
#5.2 From a visit with Clinical Manager and Head of Nephrology in April 2022 about the EBV Serology mix-up can be found here
#6 The fable of the Chicken and the Pig:
~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.”
If you are on a Totally Awesome Kidney Adventure it is good to keep in mind that in all of it, you are the pig and the chickens the doctors. They will be all about you trying new things, experimenting, trying thier best. Watch your back; ask allot questions, go slow, they are capable of doing things that will hurt you.
Note on new drug treatment to follow up on
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