another day - another pain

Today (may 29)
10 days post op - creatinine 96 - kindney function 60%

The weekend clinic is back in the ward (returning to the scene of the crime?) Those further along (about a month post op) have the weekend off.

My bowel an bladder still conspire to give me pain, I have to sit to pee just in case and am rarely disapointed. The whole operation always takes three attempts with a much pacing around the appartment before I get sufficient flow to feedback to the brain that its done.
I've been told it is the stint irritation despite the site of the pain being in the head of the penis

This is not he blog I thought I would writing but I can't concentrate on how it feels emotionally or intelectually while I'm foccsed on the phyical pain. Compared to this transplant the nephretomy was child's play. Felicity would disgaee; in her opinion the cochlear implant was a like a bee sting compared to the nephrectomy which was like be bitten in half by a great white. It's all relative.

forward to the past

I showered this morning standing up, a chair is provided but standing was easier. It felt really good, the best part of the day, just standing under running warm water. Getting in and out carrying a plethora of tubes is less than ideal. Was able to sit up most of the day and able to get out bed to visit Felicity a the other end of the corridor 4 times with a couple of return visits. The first visit had us both crying with obvious relief that we had survived. The risk of not making it are three in a thousand - wonder how that compares with dying in car accident.

creatinine 115

23^rd sun

Bad night, unable to sleep, Could not get comfortable in any position on crinkled sheets, can only lie on my right side a few minutes at a time, then on my back, then left then back again, the constant rolling is more comfortable than lying still. My backside is red from sitting up all day, my elbows are sore and abraded by the rough blankets of which I have to have two to combat the freezing air conditioning I give up in tears of a different sort, lie on my back and begin chanting a mantra (the distraction of watching dvd's worked in the daytime lets see if mediation works at night) om mani padme hum repeated over and over again aloud has a calming effect and I do indeed occasionally drift off. I wouldn't call it sleep but its better than panic and tears.

creatinine 104, the doctors are pleased everthing is going according to plan, but they were not here last night. Able to visit Felicity several times carrying my stuff wearing a hospital gown flapping open at the back. Fuck dignity I'm alive. That afternoon she was turfed out her room by nurse 'ratchet ' to await release in my room. Fine for the hospital, they need the bed, pity the patient has to sit in freezing pain. I'll leave my overall thoughts of the hospital stay to a summary blog when we get home - probably still two weeks away.

A piece of your Ear

Last week I went to the dermatologist with the expectation of finding something out about the recurring skin eruption that result either from the failing kidney or the heart pressure medications (I was going to say drugs but would be politically incorrect; drugs are bad, medication is good)

I have eruptions aplenty: the backs of my lower legs, two spots on my back (precisely placed to be unreachable to scratch), a spot on my belly where the catheter was after the operation to remove the kidney, a warty like spot or two on my left torso, a couple in unmentionable places, the outside of both ankles and a lump on the back of my neck.

None of these concerned the dermatologist, he was much more interested in my ears (eat your heart out Spock), in particular a spot on my right ear. This lead to an instant biopsy under local anesthetic - a piece of my ear removed - leaving me with the fashion statement pictured; very Spock like.

Today the results came back
(by email as requested )

Hi Rob,
Just a brief note to follow-up on your biopsy result.

This has come back showing a condition called Bowen's disease, which will unfortunately need further treatment.

Although this condition is not cancer, these spots have the potential to change into a certain type of skin cancer.
Therefore, we need to treat it to ensure that it does not transform into something nastier.

What? Nastier than a single dysfunctional polycystic kidney?

As I said earlier about all the work up tests for a transplant "...but what if they find something we didn’t know about and probably don’t want to know about." Now they have I think I'll rephrase it. " ...but Murhpy's law says if they go looking they're bound to find something I didn't want to know about."

Wanted Dead or Alive: A kidney donor

According to all I’ve heard a transplant preferably from a close relative & live donor is best option for replacing my ailing kidney function.

My lovely wife who by the merest chance has the same blood group has offered to be the live donor. She and I are being worked up (worked over) to see if a preemptive transplant is feasible. This is preferable to starting on dialysis and transplanting later and we've been told couples have the best outcome.

It does present me with a problem however. What if after all the pain and suffering my body rejects her kidney. How will I feel about the possible shortening of her life for no gain; more importantly how will she feel? What if it only works for a year or two before throwing in the trowel? Will it still seem worth it then; will it affect our marriage?

One always supposes it won't but that's easy to say while the event is only academic.

The test themselves are another threat. Anything wrong with either of us will kill the idea, stone cold dead in the market.

The doctors are of course looking to see if we are healthy enough to undergo the procedures but what if they find something we didn’t know about and probably don’t want to know about. I for instance might not have known about my failing kidney’s if I hadn’t been a regular blood donor. A blood pressure spike sent me to the doctor then to a heart specialist then to a kidney specialist, that spike was the only symptom I had at the time.

As of this post I’m ambivalent about the results of the work up. I hope my wife is healthy enough to donate but I’m not sure I’m prepared to take it from her. A bridge yet to be crossed - we are not there yet .

Organ rejection is another problem, and the chance of it remains as long as you have the ‘not you’ kidney embedded in you. The body’s defence forces (curiously called anti-bodies - perhaps they should be called pro-bodies) will try to exorcise the organ they see as ‘not you’ To counteract this I will have to take immuno-suppressant drugs daily which will give me ‘greater susceptibility to illnesses' as it says in my glossy "take control" brochure.

As I understand this, I’m allowing foreigners to set up an embassy within my borders and giving diplomatic immunity to anyone who comes and goes therein leaving me open to invasion.

The benefit is that life, after a successful operation and recovery period, should resume as normal. I should feel better than I have in a long time and have more energy. This I find difficult to comprehend. I don’t now, nor have I ever, felt as unwell as I’m supposed to with 17% kidney function. Apparently the slowness of the failure ( years in making - cast of one ) allows the body to adapt until it reaches a tipping point, and then suddenly you will feel very ill.

I am lucky to be ahead of the game.

Life, the Kidney & Everything.

In recent years I kidded myself my life wasn't yet half over, that the best was yet to come, It's harder to do now. It presupposes I would live to 124, and that life would go on pretty much the same. The operation to remove a kidney and the potentially malignant growth attached should have been a wake up call.

I ignored it, I hit the snooze button and went back to sleep.

It is I suppose human nature to forget the pain and the fear. The growth on my kidney, predicted to be 95% cancerous, turned out benign. The relief brought tears to my eyes. I was not going to die. I felt saved, in total ignorance of the salient facts:

1. I was left with one kidney
2. It was polycystic.
3. My post op function was 23% and decreasing.

My specialist had predicted (even before the operation as I remember it) I would need dialysis in 2-5 years. I ignored that too. It wasn't going to happen to me I told myself - but I knew it was bullshit. The ache in my side which led to the discovery and removal of the growth never really left me. Pain from the operational scar disguised it. As I got further from the op the ache receded became so gentle that any other minor pain or mental distraction could hide it. I can now sometimes convince myself it has gone or that it is unrelated to my failing kidney or that it was never there except in my imagination. Such is the power of self delusion.

I have at the same time become sensitive to every nuance of health, wondering if this or that slight change is a sign of the coming end for without doubt the end is coming. At 17% function I have been counseled to look at the future scenarios, transplant, dialysis or death. The last is not negotiable - I haven't finished my novel yet.