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 his kidneys to someone he will never know, never meet, 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.
2015 my kidneys failed; 3 years of dialysis, 7 surgeries plus a transplant, the trials and tribulations of anti-rejection drugs and post transplant EBV, 6 years later and I still have a few hurdles to overcome. Looking back its amazing I am alive, its not for a lack of epic failures, but I am still here. This is today’s status and a list of epic fails I went thru.
My totally awesome kidney adventure
This is a 38 page account of my totally awesome kidney adventure from my transplant to the flareup of EBV.
The transplant was a gift of life, make no mistake I am forever grateful to the donor, doctors, nurses and surgeons.
A Wikipedia primer of my situation
I have have been blessed with a successful kidney transplant and enjoy freedom from dialysis and I am very slowly returning to an almost active life. There is one dark cloud to this otherwise blue sky.
The donated kidney had a common virus that I did not have. To keep the new kidney you need to suppress your immune system. If your first exposure to Epstein Barr Virus (EBV) is after the transplant, your body can not fight off this virus. So the virus proliferates unchecked. My levels went high and I now have Chronic EBV. My chances of getting a number of cancers is also greatly increased.
Post Transplant Lympho proliferative Disease and Non Hodgkin Lymphoma
I do not have PTLD or NHL
One of the challenges is informed consent to proceed with a risky transplant. My experience making a decision on the side of the road is described here.
Sitting in my car on the side of the road in the rain, I was told, due to my negative EBV status that their was a 1% chance I could get EBV from the EBV positively infected kidney. What they said to me was untrue.
A hazard ratio of 2 means you are 2x more likely to be at risk. So if the risk was 1/100, before the event, and the event has a hazard ration of 2, 2×1=2/100 after vs 1/100 before.
In fact the risks of getting EBV was 100% and the risk to get a serious lymphoma had a hazard ration of 8. As well the risks have been well studied and procedures were published in 2012.
If someone on the hospital staff had taken 5 minutes and searched Google scholar and just read the first 4 abstracts, they would have saved us all much time, aggravation and a possible trip to oncology.
A kidney transplant is better, right?
This study states transplant outcomes are very location dependent, but overall the benefit of transplantation remains highly significant over dialysis. 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, now compare that with the risk of getting an EBV+ kidney when you are EBV-
This data from the American cancer institute give the lifetime risk for the general population for various cancers
This review in Nature places risk of PTLDs as 3- to 21-fold higher in kidney transplant populations than that in the general population. The risks for NHL among transplant recipients is reported as 2- to 3.6-fold higher than that in the general population.
This study states the hazard ratio for a EBV – patient like me getting PTLD is 7.5 when I get a kidney that is EBV +.
This study correlates a “high PCR EBV viral load …with the probability of developing PTLD. ” In this study 15% of sero-negative patients receiving a sero-positive kidney developed PTLD.
This study found that so long as EBV Levels were between 1000 and 100,000 the risk was 11%, above 100,000 the risk increased to 37%. This study did not look at pre transplant serology.
This study found that about a third of lymphomas were not associated with EBV.
This study pegged the occurrence of PTLD in 137,939 patients, 90,000 of whom they knew the serostatus of with a hazard ration of 7.5 and concluded “A Kidney Donor+/Recipient−, compared with a Kidney Donor−/Recipient− transplant, may contribute to an increase in PTLD incidence of 35% and 42% in adult Deceased Donor and Living Donor, respectively”
In 2012 detailed recommendations and specific protocols were outlined in the “Seville expert workshop for progress in posttransplant lymphoproliferative disorders” and can be found here.
So my risk of Hodgkin Lymphoma is 1/55 instead of 1/417 for the general population and 1/139 for the transplant population. For the general population the Lifetime risk of Non Hodgking Lymphoma is 1/41, for a tranplant patient 1/20 and for me 1/11. Lucky me its still 10/11 that I will dodge the bullet.
|HL||1/417||3 – 7.5||1/139||1/55|
L/R kidney patients from studies
L/R Kidney patient 3 from Nature
L/R Kidney patient 7.5 from Nature
L/R Kidney Patent 1/139, 1/20, 1/55 and 1/11 calculated
H/R = Hazard Risk, L/R=Life Risk,
NHL=Non Hodgkin Lymphoma
Faith in transplantation
More than one doctor has ended a discussion with “you are better off with a working kidney; off dialysis, there is a shortage of kidneys you know” Nothing more dangerous than an unexamined assumption.
So going off dialysis, has a hazard ration of 0.4, changing my risk of dying from 1/100 to 1/250 but having the transplant with no regard for my serology gave me a hazard ration of 7 changing my lifetime risk of getting cancer from 1/417 to 1/19.
To my ear, the one only 60% damaged by Lasix, this explanation rings hollow. But that ringing in my ear never really stops, so maybe I am just suffering from paranoid delusions and acute mania from Tacrolimus nuerotoxicity.
Sarcasm alert ended
I am left with with allot of unanswered questions, the most obvious is how could this error happen. The other questions are outlined below:
The last year with Covid has put incredible strains on the medical system. For the last year my contact has only been by phone and usually a scheduled 10 or 15 minute call with a nurse practitioner who has done an admirable job but time always gets in the way. Despite this my monthly blood work has continued, ultrasounds, x rays, cardiologist, psychiatrists, and a few longer calls with fellows have all worked to help me along. Despite this I still have a few questions that go unanswered. I must admit if answered it may only lead to a few more. Maybe I am a Needy Baby, Greedy Baby.
An error is only an error if it is measured.
Every doctor I encountered was intelligent, knowledgeable, and trust worthy. Every nurse caring, competent and friendly. I am left with an incredible sense of gratitude and feel cared for. I was treated with compassion. The hospital did exactly as its vision dictated ”
“To provide each patient with the world-class care, exceptional service and compassion we would want for our loved ones.”
The hospitals vision references platitudes that cannot be measured. Who is to say I did not receive an “exceptional”, “world class”, kidney. I was certainly treated with compassion. In fact that was not the issue, the issue was how does a sero negative patient receive a sero positive kidney when anyone informed on kidney transplantation should know better. The reason is because the value statement does not sound like this.
“Our treatments are based upon scientifically derived processes designed to make treatments safer with improved outcomes for our patients. We continuously improve our processes and care standards through rigorous public evaluation of metrics.”
If treatments are not based upon process, mistakes are made, if measurements are not made, no one knows. If the actions of staff are heroic, they are always making “saves”, its because they are “winging” it. Outcomes are not predictable as management does not measure and success is independent of the patients outcome and no one improves or fail. As fate would have it, organizational process is something I practiced and studied.
Capability Maturity Models
When looking at any organization it is possible to overlay observed behaviors against a rubric of characteristics. From that you can determine the capability maturity of that organization. The objective of management should be to use metrics to build a body of best practices; outcomes over time will improve as processes are adjusted based on decisions founded on sound scientifically derived metrics.
This study found most doctor mistakes were like everyone else’s mistakes. The result of faulty reasoning attributed to cognitive biases. Physicians generate diagnostic hypotheses based on recognition of similarities between a case at hand and scripts of diseases or examples of previous patients stored in memory. This “pattern recognition” is largely dependent on the doctors attention to detail and is an open door for confirmation bias (i.e., a tendency to search for evidence that confirms rather than refutes initial hypotheses), or the availability bias, which leads physicians to overestimate the likelihood of a diagnosis when it comes to mind easily.
Sadly what doctors do not do is use a process driven predictive algorithm with a feedback loop and a multi billion point data set that is constantly updated as new knowledge is discovered. Read about new tools here.
For a person trained in auditing against a CMM the nature of the organization is obvious.
Follow this link to learn more about capability maturity.
Follow this link in regards to studies
Follow this link to side of the road
Follow this to see just how much anti rejection drugs correlate to cancer