Kidney Transplant

The day was ending and the road narrowing……I was in deep water and fierce fire…..and then…. a gift of life

Thank you to an unknown hero

On Aug 10 2018 a brave soul left this mortal plane. Before his passing, he donated a kidney to someone he will never know and who will never be able to say thank-you. I was the recipient of endless kindness from the nurses, doctors, specialist, surgeons, friends, my wife, to all.

Thank you

I am forever grateful to the donor, doctors, nurses and surgeons.

My Totally Awesome Kidney Adventure

An overview of the first few years can be found here. This is a series of PDF’s a total of about 40 pages in 5 articles that goes over the diagnosis, dialysis, transplant, recovery and Epstein Barr Virus (EBV)

Kidney Transplant primer

When faced with a transplant there are a few things you need to know. Everything from Chronic EBV to PTLD has a Wikipedia article about it and it can all be found here in one convenient spot

Informed Consent

You make the decisions about your treatment. Sounds good, one of the challenges is informed consent. My experience making a decision on the side of the road is described here.

I recieved an “exceptional distribution kidney” turns out it was an exceptionally bad kidney, that tale can be found here. On the same page is a flyer from a different hospital that sends a very clear message about the less than prime kidney.

My frustrations 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

Yes it 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.

Survival
Time
Survival rates
deceased donor
Survival rates
living donor
1 year90%95%
5 years70%80%
15 years50%60%
Survival rates in Kidney Transplants; Terasaki, Cecka, Gjertson, New England Journal of Medicne 333-336 1995

Outcomes

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.

EBV; an added risk

The numbers: Transplantation is associated with lower mortality compared with remaining on the waiting list; 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.

Other risks can be added. The risk of being given Epstein Barr Virus (EBV) and then being put on immune suppressants is outlined here.

The risk of early and late onset PTLD can be found here

A 2022 survey of what can be done about EBV and PTLD can be found here

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. Having the transplant with no regard for my serology gave me a hazard ratio of 7 changing my lifetime risk of getting cancer from 1/417 to 1/19. Follow this to see just how much anti rejection drugs correlate to cancer

Unanswered questions

Advocating for your self is important. Having someone by your side is equally important. The Medical system is under allot of pressure from government cuts, governments wanting to introduce private care, mass increases in population from immigration.

Often the system cannot afford to sit down with you and talk about your situation. After the transplant and after you are stable you get 10 minutes with a nurse practitioner or Fellow, and less with a doctor every 3-6 months. Being a curious fellow I have a few questions that mostly go unanswered. I must admit if answered it may only lead to a few more. Maybe I am a Needy Baby, Greedy Baby.

Penny reading Leonard’s mothers book The Disappointing Child, chapter 6 “Needy Baby, Greedy Baby”

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 in regards to studies

Follow this link to side of the road

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