Epstein Barr Virus
The immune suppressants that prevent rejection of my kidney are working. My kidney health is poor but stable. Acidosis, Protein in Urine, a GFI of under 30. The prognnosis as of August 2022 is maybe a year or two of life in my kidneys.
The bad news is the same immune suppressants are preventing my body from fighting off the Transplant acquired Epstein Barr Virus (EBV). The Epstein Barr virus is one of 8 Herpes virus that affect people.It is one of the most common viruses affecting 90% of humans.
Only about 5-10% of the population has no EBV. You are positive or negative. My status before the transplant was EBV Sero-negative, i.e. no EBV, however my donor was EBV Sero-positive, i.e. my donor had the virus.
What I know now is that EBV – patients should not receive an EBV + kidney. It has the potential to make the recipient (me) very sick. This is not some Columbus level discovery; it is well documented in the literature.
I was told that an EBV- kidney would never come along so the doctors advice was proceed. Statistically that does not make any sense. To keep me calm they either make stuff up or do not understand statistics.
If they prioritized EBV- kidneys to EBV- patients the numbers would work out. I discussed this issue at length with a friend who is a PHd in physics and a math savant and he confirmed my suspicions.
In any event With no Immune system to keep it in check the EBV can progresses to Post Transplant lymphoma proliferative disease; a sometimes terminal condition. So to prevent the spread of the EBV and give my immune system a chance to knock out the EBV, immune suppression is reduced.
Fortunately this did NOT lead to a rejection incident. You can tell when doctors gather in groups of more than 4 you have a problem, there were 5 there the day they told me this.
When DNA from EBV is measured the numbers are in the thousands.
below 1000: The tolerance of the test
2,000-3,000: Heavy fatigue, hallucinations
5,000-10,000: Possible spleen and liver damage, symptomatic of PTLD
50,000 + Oncology is your new home 80% survive 5 years
I never really got beyond a state of fatigue, another name for Epstein Barr is mononucleosis and another is chronic fatigue. “Mono” or “kissing disease” is a month long annoyance in your teens if you have a healthy immune system.
If you are suppressing your immune system to help you keep your kidney intact, then that’s another story all together. Napping often does not capture how you feel. When referring to a nap or sleep, this is notjust “oh I feel like a nice nap”, this is a time of mental and physical breakdown, I am unable to think, talk, drive, become agitated if I don’t lie down and cover my eyes. Overwhelmed by any sensory input, would be a better description, then falling into a deep sleep lasting 4 hours.
It is not a normal response at 10 in the morning and then again at 4 in the afternoon after you have had 6 hours sleep overnight.