Friday, June 11, 2010

Life with EIDS


EIDS a term I coined to reflect my situation and stands for Engineered Immune Deficiency Syndrome; a close cousin to AIDS. I take drugs to make sure my immune system is deficient.

At the start immune suppression is savage to ensure the new kidney has a chance to settle in to this foreign environment (me). It will be eased as time goes by (already the evening dose of Tracolimus has been reduce by 1mg)

This chart shows what I take DAILY at 9AM, lunch, 9PM & before bed.

It is now just over three weeks since the transplant. Day by day life improves. The peeing problem abated suddenly over a couple of days last week after a two bouts of diarrhea from something I ate.

My usual lunch prior to transplant was a couple ham, cheese and tomato sandwiches. The sliced ham comes in individual sealed pockets (just enough for the two sandwiches) and though i used it all and it was well within the use-by-date my repressed immune system couldnt cope. I had lunch - I felt unwell - my intestine got in knot - I shat liquid - felt better and was was normal by the morning. I had the same lunch the next day (not sure of the culprit) and repeated the entire process.

The following day I had tuna & lettuce. Ive been well ever since , four whole days without pain or sickness. As I said, day by day life improves.

My poor long suffering wife and donor Felicity is also improving but nowhere near as fast. The pain was so intense last Monday I took her back to the RAH. Our transplant surgeons organized a CT scan of the removal site. All was good but for an air pocket under the scar that has yet to be reabsorbed which may be the source of her pain. Time will tell.

1 comment:

  1. may Felicity continue to improve, like your good self Rob -- thinking of you in my own way..