1: About a year after the transplant I found a fact sheet that explained the extraordinary distribution of kidneys. I have no recollection of a conversation or approval of the ExD kidney.
Q Was a risk assessment done, if yes can I have a copy, if no how was the decision made?
Answer: Yes a risk assement was done, no it is not available. The hospitals practice is that EBV + kidneys to EBV – negative patients is an acceptable risk, otherwise we never find a match for you.
2: Was the exceptional distribution donor (ExD) of the kidney because it was offering a sero positive kidney to a sero negative patient? Or was the exceptional nature of the kidney because of the possible Aids exposure of the partner 20 years previous, or the death of the donor from cancer? If so what was the actual risk?
Answer: To total condition of the kidney made it an ExD kidney. EBV alone would not qualify as an ExD.
Pre Amble: I was told on 3 occasions by three different doctors the risk of getting EBV was 1%. This 1% statistic is the risk of the EBV+ population having an EBV flare up after transplant. The risk for an EBV- patient being given a EBV+ kidney is different. I have read abstracts that state the risk is 60% and others that said 100%. I followed up with Dr Hoar and she acknowledged
~the risk of an EBV- patient receiving a EBV+ kidney as approaching 100% and
~the risk of a EBV- patient receiving an EBV+ kidney getting a lymphoma or PTLD as having an 8x hazard ration. or in my case about a 1/11 chance.
3: If a patient was being offered a kidney today with a serology mismatch would the messaging be the same; that the risk of EBV and PTLD after transplant was 1% when serology was mismatched?
Answer: Yes the 1% risk of EBV is a valid statistic.
4: If you were to call a EBV- serology patient today with an EBV+ kidney would they be told, it was a 1% risk of EBV and it was only a slight adjustment of the meds to fix things up or would they be told by accepting the EBV- kidney they had a 1/11 chance of getting a lymphoma that is often described as the most serious complication of a kidney transplant? Has the messaging changed in the last year?
An Inspired Doctor
3: It was explained to me by one junior doctor that no senior doctor has taken an interest in my rare disease and that is why I never talk to a senior nephrologist. Is this true?
4: Is there a doctor in one of the other transplant centers who is interested in Serology mixup transplants.