Friday, June 25, 2010

A apologies

Today is my dad's birthday.

It's almost 14 years since he died and I was 14 when he died, so I am reaching a stage of unwelcome equilibrium. How strange that he has been absent for the same length of time he was present.

I question my memories of him now. Whether they are truly mine or whether they are constructed from the recollections of others who had the pleasure of his company long before I featured as part of his legacy.

The stories I have heard have chided my youthful ignorance of the revelation that mothers and fathers were people before they were parents; that there was life before our family unit and that that life was exciting and funny and even rebellious at times.

My dad was always the one who accompanied me on trips to the doctor. The usual minor childhood illnesses (of which I had several) drilled us in what became a familiar routine. A day off from school and a day off for him from work, into the back of the car with a pillow and blanket, into the doctor and then a video of my choice and whatever treats I wanted on the way home to the couch which always served as the sick bed.

It was also dad who was with me for my first encounter with a nephrologist. That was when I was 12 years old and there were mutterings we hadn't heard before, suggesting that something may be wrong with my kidneys. Nothing was confirmed in tests that saw me go under anesthetic for the first time and I was sent home to be a normal child and grow out of it.

It is now known that this was the point when my kidneys began to fail. The doctors I have come across in the last two years have grumbled that if we had caught it then, they'd have done this and that and maybe put off the inevitability I am now living with for another few years.

I have no time for their medical opinion on this one. I am glad my dad didn't know what was ahead when he died, that he passed away without worrying that he was leaving me behind with nobody to put me in the back of the car with a pillow and blanket or to get me a video on the way home.

For my increasingly hazy recollections of him, I do remember his laugh and I remember him waking me up with chocolate milkshakes at all hours when he would come home from a meeting. I remember him always asking me what page I was on now of whatever Enid Blyton book I was reading and taking delight in my grasp of the Irish language which he didn't share because like many of his generation, school was dropped out of necessity for taking over the family farm.

Most of all I remember that he was a gentleman of the kindest and most patient manner.

I can only hope that I also made his life, in some way, wonderful.

Tuesday, June 22, 2010

The stats

With the anniversary now gone by and the move into my second year on dialysis complete, I have tried to compile some statistics.

Numbers aren't as good a friend to me as words, but here are some figures from the year that was:

There have been 364 nights of dialysis (one night off, with permission from my consultant).

That amounts to 2,912 hours of being attached by a line that runs from my tummy to the machine in the corner of the bedroom.

I have carried 546 litres of dialysis fluid around in my tummy throughout the daytime hours and by night a total of 4,368 litres have flowed in and out of my abdomen.

I have gone through (and duly recylced) rougly 1,752 cardboard boxes.

I have taken 4,004 tablets and 15 energy injections.

I have had approximately six pints of blood taken from me for various tests.

I have spent zero nights in hospital and only about one hour in the company of my consultants, spaced over approximately seven appointments throughout the year.

I have slept about 3,276 hours, an average of 9 hours per day, split between what I manage at night and naps in the afternoon.

I have maintained my weight in and around the 54kg mark and have had a blood pressure reading that has averaged out at about 115/75.

I have thrown up approximately 40 times (mostly in the last two months) and have had to kneel down in the shower to stop myself from fainting on about 30 occasions.

I have walked and run several hundred miles and driven thousands with Brendan in the boot.

I have disposed of about 100 bags of hazardous medical waste.

I have now been on the transplant list for ten months.

The average wait for a new kidney remains at two years.

Tuesday, June 15, 2010

Away from it all...kinda

Holidays are a matter of discontent for me these days. Mostly because I have made the decision not to go abroad until I get my transplant.

I could in theory step off the island for a vacation. It would mean I would have to pack Brendan into his coffin case and try to float him through the metal detectors at the airport without raising an eyebrow.

Perhaps pre-9/11, it would have been possible. Nowadays I'd imagine his presence in any terminal would result in at least a Code Orange Security Alert and an uncomfortable pat-down for me by some butch looking 'woman'.

Leaving the country would also involve getting my beloved Baxter to deliver all my fluids to where I'm going and would require me to bring all the extra accessories that go with dialysis.

I have considered the possibility, but have had any such notions quenched - not least by the tales of botheration from one of my dialysis buddies who is far less prone to grumbling and moaning than I am but who went away for a week with her Brendan and vowed to never, ever make that mistake again.

Potential annoyance aside, travelling would also require me to inform Beaumont Hospital that I should be suspended from the transplant pool as I won't be available if my kidney came up. Am I going to do this? Absolutely not. I am staying put on this rock until I'm sorted.

So this year I am holidaying in a beach town at home. Some have kindled a conversation with me in cafes or in the queue for a 99 in the shop, saying the recession can't be all bad if we're here on a day like this, with the sun finally finding Ireland and the waft of fish and chips always hovering on the breeze.

I agree with them and smile politely cos I'm a far nicer creature on holidays than when I'm at home.

But I am of that generation which was brought up to believe you have to go away to get away, and I look forward to the day when I can board a plane bound for somewhere strange and exotic again. Already there are blueprints of journeys in my head. So many places to see.

There is the niggling concern about my carbon footprint, but I'll plant a tree.

Heck, I'll plant a whole forest.

Friday, June 4, 2010

A terrible beauty

It calls for both a 'woo' and a 'hoo', this day that greets me every three weeks when I am allowed to give myself a medicated, synthetic energy boost.

It is my most favourite of medications, 30mg of a liquid known as Arenesp. If I were to create a metaphor (and it would be rude not to) this excursion through dialysis could be regarded as a marathon and the Arenesp days mark the water points along the route.

It comes in the form of an injection. I keep a box of syringes in the fridge, currently next to four bottles of beer and out of reach of any children - though if they are any childer-beasts found near my fridge, they've broken in to my apartment, so I say let them stab themselves in the eyes, that'll teach 'em.

It is I who performs the task of giving myself the injection - and it took some getting used to. Nobody likes needles and fewer still are comfortable with not having a doctor or nurse to silently curse and hold accountable when you feel that pinch.

A quote I read from Ian McEwan recently summed it up nicely. He points out that there is nothing in nature to resemble the sight of a syringe piercing skin. It goes against the natural reflex of every sensory nerve to inflict this upon yourself, to willingly infiltrate the bloodstream with something unnatural.

Deep, I know.

I actually didn't come up with any of that myself. I heard two junkies talking down around the Cornmarket the last night. Deep in reflection they were before shooting up.

I'm an awful woman for eavesdropping.

Tuesday, June 1, 2010

My bit on the side

It will not have escaped the attention of observant This Limbo readers that some impostor features have sprung up in the margins.

Check out Playing for Life if you have a chance - it's a blog I've been asked to do in the run-up to the Transplant & Dialysis Games and it'll chart my progress towards the events in August.

I should say that early optimism for unprecedented success at said Games has been given a true reality check and the hype is now more muted than bellowing.

If you think 'sick' people would be lesser competitors for their illnesses, think again. They are athletes and they kick ass.