Imagine driving down the road
It is raining, you are heading off to do chores; your phone rings. You are asked to pull over its the nephrology department calling, you pull over to the side of the road with a wide shoulder.
It is explained a kidney is available, today
>>Flashback<< A few years earlier you spent a day at the hospital going through a transplant orientation, dialysis was beginning, your brain is impaired, you hear some success stories, are given a binder from a drug company and some handouts. Everything you will need to know in 5 to 10 years, the wait time. You fill out some forms, its a distant event, none of it really sinks in, you just know you want this hell called dialysis to end.
>>Boom; back to reality<<
-A gentleman who has decided to donate his organs is brain dead, in a coma, he will die in the next few hours.
-He had a cancer in his brain but it is not contagious
-His partner had unprotected sex in Africa 20 years previously but he does not have Aids, if you accept the kidney you would be tested for Aids for a year after the transplant
-The kidney has a virus you do not have called Epstein Barr Virus, if you accept this kidney there is a 1% chance you will get Epstein Barr Virus but it is easy to deal with, simply an adjustment to your medications and you will be fine.
Do you want the kidney?
Oh? Now at this point you have been on dialysis for almost 3 years, the peritoneal dialysis did not work, you did in center dialysis, graduated to home dialysis, found the whole ordeal depressing. You are in a depressed state, seeing a psychologist, and this looked like a path to freedom.
Third time is a charm
The first time a doctor in the chain of command cancelled the surgery.
The second time you were admitted to the hospital waiting for a traffic accident victim to die for 3 days, but he did not die the right way and the kidney became “stale”.
Now here was a poor fellow just waiting to help you out.
You start asking questions.
You are unsure, allot of problems, Aids, Cancer, EBV, whats that? Your wife who is with you is reluctant. As the questions go from 5 minutes to 10 the tone changes and you are asked “Do you want the kidney or not, the surgeons are at the airport, a private jet is standing by waiting for someone to say yes, they will fly to get the organ and fly back tonight to do the surgery.
Do you want the kidney?
A reasonable question considering the circumstances. I am afraid, AIDS, Cancer, EBV; It is not like they want to hurt me, they are here to help, they would not offer me this kidney if it was not the best thing for me. Of course I want the kidney, what are you nuts? What could be worse than sticking inch long needles in my own arm twice, every second day and having the blood sucked out of me for 4 hours. Survival instincts and my bias towards action kicks in, I ask myself “what would I do if I was not afraid?” F#%! it lets do it, later that evening I am being prepped for surgery. You do not have allot of time to reflect on the conversation about transplantation 3 years earlier.
No, life is to short for regrets. Do I have a lymphoma? No, so it was a good decision. I prefer to look at the stars.
Two men look out the same prison bars; one sees mud and the other stars.~ Frederick Langbridge
If I knew, what would I have done?
If I knew? If the doctors knew is more to the point, what would they have done, they would not have given me the choice. That is what I believe. For now I can only look forward not back. The transplant only fills me with gratitude and joy. To take any other position would be harmful to me. My training tells me the administration of the hospital should investigate, put in place a corrective action and not make this mistake again. To date it has been an effort to get a doctor in nephrology to admit the risk was in fact 30% and not 1%. But I have got that concession from one doctor but not the next so the message has not spread.
Was this the best possible process?
No it is not the best process to get informed consent? Another approach would be training of staff so they are aware of the risks they are inflicting on patience. More attention to timely training of the patient and those asking for permission would lead to informed consent. The truth is I had no idea what I was accepting and the people offering did not understand the implications of what they were offering.
I may be limping but I am still walking.
I really am only filled with gratitude, I can focus on the pain I experienced, the errors or the miracle of my new life.
I think of my 6 year old grandson, enthusiastic, caring, no hate. He always tries hard and he is as capably mature as any 7 year old. Yet he does not know what he does not know.
The hospital is full of enthusiastic caring people, I never saw hate. People are trying very hard, heroics happen. I have seen processes in the hospital, I have seen signs of metrics in the hospital. they use science to solve problems, but it is not evident to me they use science to manage their professional affairs.
For the hospital, it will come. For me their is no going back
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