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 10: Quagmire
Chapter 11: Rejection diary
Wikepedia Primer a few things to know from Chronic EBV to PTLD
Informed consent decisions are made for you. Be careful.
Exceptional Distribution Kidney. (EDK) is a euphemism.Be sceptical.
Frustration A short verse about frustrations. Be happy.
Sceptical Doctor. Harriet Hall M.D. Yes to applied science.
In regards to studies Discernment is important; peer review fraught with difficulties. Reviews of many studies are better.
Capability Maturity is a topic that if discussed with doctors leads you to being labelled as having an anxiety disorder.
Transplant outcomes are very location dependent, but overall the benefit of transplantation remains over dialysis.
Anti rejection drugs correlate to cancer. Good news you are not going to die from kidney failure; Bad news you are going to die from cancer.
EBV, and CAEBV : the reality of my transplant.
Hazard ratio of an EBV+ kidney to a EBV- patient changes the lifetime risk of getting cancer from 1/417 to 1/19. Acceptable to the doctors.
EBV risk for EBV- patients new EBV and immune suppressants can lead to early and late onset PTLD which is explained here.
EBV PTLD Studies
EBV PTLD 2022 survey
EBV PTLD what was known 20 years ago
Metabolic acidosis notes
Notes from a clinic visit in August 2022
Questions and Answers with Clinical Manager and Head of Nephrology in April 2022 about the EBV Serology mix-up
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: “Hmmm, 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.”
You are the pig.
If you are on a Totally Awesome Kidney Adventure it is good to keep in mind that doctors will be all about you trying new things, experimenting, they are trying their best. Understand the difference between being committed and involved. Watch your back; ask allot questions, go slow, they are capable of doing things that will hurt you.
Weird Sly Kip 5 years after transplant with a GFr of 20, heading back to dialysis in the next year or so December 2023
Good Luck.
~*~
END
~*~
.