Peri - what dialysis?

Hands up who knows what peritoneal dialysis is? Probably only those who have had to confront renal failure have any idea. I'd never heard of it a couple of weeks ago when my wife and I went for dialysis counseling. What I did know was that Dialysis, in saving my life, was going to ruin it.

After the kidney removal op we did a last chance three month world tour on the assumption that overseas travel would out when I went on dialysis (in 2 - 5 years.) Dialysis would tie me to a hospital 3 days a week 4 hours at a time. Its actually worse than that. There is travel time to and from, waiting, setting up and recovery time. In reality I will lose three whole days a week.

This is Haemodialysis. For this to work a shunt is created in my arm by joining an artery to a vein; back pressure swells it so they they can get the twin needles in. (inlet & outlet). I started to faint just looking at the pictures. How the hell am I going to cope with that. Pass me another jelly-bean.

Then we were shown the graph of what will happen in my blood, the build up of waste and pressure which may make me feel lousy until just before dialysis. This up down cycle is not really good for me and it's worse on weekends because they only dialyse on Mon, Wed and Fri. I may well feel like shit on Monday and it will probably take longer. After a while my kidney will dry up from lack of use, I will stop peeing and have to go on a restricted fluid intake.

This was the first option presented to me. It was also the only dialysis I was aware of and to say I was not impressed is putting it succinctly. It seems to me they told about the worst option first so I would feel relieved when I heard about Peritoneal Dialysis. PD for short.

Trust me, I was incredibly relieved - no needles - do it at home - 15- 20 minutes - 4 times a day.

That last gave me pause; I knew there would be a catch. Then again three meals and supper is four lots of 15 minutes in a day. That dost not sound so bad dost it? Very few diet and fluid restrictions, less ups and downs and its portable so we can still travel. Yippee! I cant wait --- uh? Hang about, this is still serious. I'm still dying here and being kept alive by this artificial procedure.

And of course nothing is ever quite that simple. I have to be fitted with a permanent catheter ( I just knew they'd find a way to let the surgeons in on this) and I'm going to be two kilos heavier from the 2 litres of fluid I have to carry around in my abdomen, to be precise in my peritoneal cavity - the bag that holds all my organs together. I have to have a storehouse for the boxes of 2 litre bags, a work area for the exchange and I have to bloody careful.

When they told me there was a risk of infection I assumed they were talking about the exit site of the drain pipe hanging out my underdaks - where the tube meets the skin but no, the danger here is internal infection; something getting back down the tube into my PC (that's peritoneal cavity not personal computer). Apparently if I so much as drop my catheter on any surface when its uncapped I have to report it immediately and I will be given antibiotics - it's that bad.

Still it may well be worth it because once I have mastered this procedure I will be given a machine that does the whole lot overnight; plug in - go to sleep - wake up - unplug - get on with life - now we're talking the same language. Oh! and they supply the bags anywhere in the world anytime free of charge.

There is of course another even better option - Transplant
I'm looking into it.

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.

Out from Under the Knife♠

It's done. I'm a kidney short of the full person.

I'm writing this sitting up in a big leather chair, in my bookshop, looking out the plate glass window at old gums and cattle pastures, logged onto blogger, typing directly into the create page on a wireless laptop; ah the wonder of modern technology.

The cut is long: from just left of my belly button across, back and up to just under my left armpit. It is now 19 days old, healing nicely but bloody painful whenever I walk for too long, sit up for too long, cough, sneeze, or laugh. Turning in my sleep wakes me every time.

* * *

Friday 13th March 2009
(that this is posted on Friday 13th is entirely ...)

The above though written at the time indicated, was for reasons unknown, never posted. Only now when I again feel the need to blog do I see that a couple years have slipped by unremarked. Again my kidney problem is the return prompt; function is down from 23% just after the op to 17% - a trigger point to start thinking about some sort of replacement therapy. There seems to be some sort of unconscious direction here. why do I only make the effort to blog when my kidney problem threatens to disrupt my lifestyle? I have no idea but have decide to go with the flow and, contrary to intention or expectation, chronicle of my journey through approaching renal failure.