Life with EIDS

G'day

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.

Nothing surer than Change

g'day

The solutions were a mixed bag some relief but not really enough especially overnight. By the time the need wakes me it's urgent and painful, not time to be playing with aesthetic injections, so it's back to walking the dog.

Despite this, we are both generally better and went for a walk down the mall for lunch. It was both easier and faster. (Aside: An additional reason for our expensive choice was to test if liked city living - i.e. sell up in the outer burbs and move to the city) My son Jason who works in the city joined us for coffee in our favourite bookshop in his lunch hour, a side benefit of city living.

As he was leaving I got a call from the renal co-ordinator at Flinders Medical Centre FMC (my local hospital) saying the RAH (my transplant hospital) was going to release me and an appointment had been made for next Thursday, which I took to be Thursday next week (today being Tuesday)

I was wrong. When I rang for my results (creatinine 98) I was told don't come tomorrow. It seems the doctors are so satisfied with my progress after the biopsy they're transferring me back to FMC for further clinics as of NOW. Next Thursday actually meant this week - two days time. I was original told (as my blog testifies) daily clinics for three weeks to a month) - Tomorrow is exactly two weeks since the operation and neither are supposed to drive until then so this comes as a shock.

Gloriously the FMC clinic only runs twice a week, not daily, so it's all good news; not to mention the fortune we will save ($200 / day ) except we have to give 24 hours to our hosts so I bargained with RAH for one more clinic tomorrow, then FMC Thursday.

Here endeth stage one. I now enter the brave new world of the immune-suppressed transplantee - for life - which was of course the object of the exercise.

'Ooroo

Monday, Monday, Can't Trust That Day

Yesterday was good last night horrible

Yesterday: Sun 30 May

walked up to the Sunday markets in Rundle St East, then down the mall to buy a jigsaw. Slowly of course with many stops for coffee and toilet ( that problem hasn't gone away)

That problem came back with a vengeance overnight, if you rate pain on a scale of 1 to 10 where zero is no pain and 10 is excruciating agony this is a 12. and it happens every hour whether I need to pee or not. If you see man in gray track suit pants in the mall who confronts you by suddenly playing pocket billiards it may be me.

T0day Mon 31 May

Started well and went downhill. The daily clinic was good, I reported the increasingly belligerent penis and have been given some solutions. One a 'sal vital' like effervescent drink to de-acidify my urine and two a penile injection of local anesthetic gel.

Then they looked at the wound and decided on the spot to remove half the staples (bonus they weren't due out till Wednesday) It a good feeling to think that you are progressing faster than expected - it might all be bullshit but the good feeling remains.

Today was also scheduled for biopsy so back to the waiting room. I vaguely remember the last one just before my nephrectomy as being an overnight stay but I wasn't that worried this would be different. for natural kidneys they dig deep through the back, 'unnatural' ones are in front just under the surface. I didn't feel a thing it all went smoothly and painlessly but then the crunch, I was stay lying on my back in that position for the next six hours

Oh! shit - more correctly Oh! Piss - six hours, that's at least 5 urinations in this position without the ability to get up and dance with a firm grasping the instrument of pain. The routine I've developed to help me through the night. Pity I didn't the solutions earlier.

I rang Felicity to give her the news and she walked to join me fro most of the six hour nightmare sitting in her own chair of pain. It is true, misery loves company. peeing lying down is an art form - doing so, regularly, while peeing acid is a sport for elite athletes - I'd rather have a baby - at least you get something nice to take home.

In the end I was at the RAH from 7:30 to 4:30 - a whole day of what little life I have left shot

But I have the solutions - let's hope one of them works

'Ooroo