Tuesday, March 30, 2010

Something to listen to

For anyone who missed The Tubridy Show on Radio 1 yesterday morning (or for those of you who keep similar hours to myself and who are only turning over for another round of zzzzs when he is on air from 9-10am), I thought I'd put up this link to his discussion on Organ Donor Awareness Week. Admittedly, I'm really only doing this because I featured on the programme(!), but also for anyone who is thinking about the possibility of a living donation from a relative, you will hear from a married couple who took the 'in sickness and in health' vow to a new level. Pretty interesting stuff.


(Go to this page and just scroll down to 'The Kidney Story'...They spell my name wrong, but this is a constant problem. I know that if anything exciting or tragic ever happens to me with an ensuing media circus, my name will appear in the papers as Rachel Hanley, aged 32...the final insult).

Friday, March 26, 2010

The preoccupations of a mental mind

I have this tendency to get bogged down with insignificant details. I fixate on the largely irrelevant, I miss the bigger picture - if it were an original Monet, I would stare only at the etchings on the shiny frame and not at the actual water lillies - the whole house could be in disorder, with goats wandering through it, grazing on a week's worth of leftovers and I would focus all my energy on cleaning on the cutlery drawer until it's shining. Strange, I know.

I'm noticing the same tendency with my thoughts about the day/night I am called for transplant. I think about this all the time. Where I might be, what I might be doing and how I'll react when the phone rings and they say "Woo hoo. Come on down here Regina Hennelly, we have the most amazing kidney waiting for you".

What do they say I wonder? My idea of that phone exchange between myself and the nurse/doctor is based on what passes between a radio DJ and lucky Caller Number 9 who wins the all expenses paid trip to paradise. You see how my mind works and how I digress.

Anyway, the phone rings and this is it. What do I do? I have a bag of pathetic-looking pyjamas packed (another preoccupation - why don't they make and sell pyjamas that are a bit more rock 'n' roll rather than the pro-chicken/bunny rabbit/teddy bear propaganda that is plastered on all the pyjamas on sale at present? I want pyjamas that say I'm waiting for a revolution).

In that bag also is a toothbrush, toothpaste, slippers and some other toiletries to try and ensure I remain in a haze of nice smells to block out the odour of hospital while I'm holed up in Beaumont.

So that's the bag. But I'll need other things and my mind fixates on how I must remember to bring Buster (ok, he's a teddy and that is a bit girlie, but he's my hospital buddy and trust me, he's better company than some of the mental old people you come across when you're in a public ward - most of whom always seem to think I work in the hospital just because I'm under the age of 40, apparently fully in charge of my bodily functions and capable of walking at more than a step on the hour - they therefore constantly scream "Nurse" at me and ask me to get them stuff...if you're offended by this, I apologise, I don't dislike old people - in fact right now my most fervent wish is that I will live to be an OAP).

They tell me I must also remember my medication. Whatever. I'm going to a hospital, surely medication is not something they run short of. Then I wonder if I should take time to tidy up my apartment a bit before I leave...take time to change the sheets on my bed because the family will crash at my place while I'm in under the knife and recovering...Then I wonder if I'll have time for a nice shower before I leave and whether I should shave my legs, seeing as I probably won't be capable of doing this for several days after surgery and that'll just get really annoying.

Transportation is another major issue. This will be a factor if I happen to be down the country, visiting la famille when I get called. If it's just me and my mother at home, will I leave the car and maybe get the train? If I did this, would I be able to stop myself from poking the stranger sitting beside me in the carriage: "Guess where I'm going?" "No, really, guess".

If I try to drive myself, will my brain be so addled that I will be a danger to myself and others on the road? Without doubt, the first thing I'll do when I get the call is throw up. I tend to do that when I get a shock. Never, ever say "boo" to me or jump out at me. Very messy.

These are just some of my preoccupations, all centred on that message which will signal what will hopefully be the beginning of the rest of my life. Whatever minor chaos does ensue in the minutes after I am called, I do know that I will arrive at the ward in Beaumont in quick smart time - perhaps feeling a little shaky and a lot scared - but I will walk through the doors and tell them who I am and why I'm there and say "Yes, I'm ready".

Tuesday, March 23, 2010

*WARNING* Blatant Attention-Seeking

This is shameless self-promotion on my part, but for those who don't read or haven't the time to flick through the entirety of the weighty Irish Times, I offer a link to my article which was published therein today - it also contains a pic of me for those curious to know what a freaky dialysis patient looks like:


To those who have already read and taken the time to then visit this blog and post lovely comments, I am really grateful. It's actually been a bit overwhelming after going many months without talking to anybody outside of a few close friends about the day-to-day reality of this. I want to reply to each of you individually, and I will do that just as soon as I figure out how...technology is not my strong point and I'm still learning how this stuff works:-)

Sunday, March 21, 2010

The stuff of daydreams

Daydreaming has always been a problem. Not my fault, it's cos I'm a Piscean. We're the least likely of all starsigns to ever be rich or successful and I fully believe it's because there are entire days when staring out the window seems like a perfectly fine way to pass several hours in my book.

From a young age, it was clear to my parents that the traits they expected to have to deal with in a toddler/child/teenager were not materialising with me. Instead of the usual tantrums, constant attention-seeking and hyper-activity, what they found with me was far more disconcerting - a strange, normally silent girl, who stared at her hands in infancy and remained largely lost in her own world the rest of the time. My dad used to call me his 'beautiful dreamer'. My mother called me many other names, all of which I'm sure had love as their source, but which were rather less kind.

The stuff of my daydreams was dependent on where I was in life. I would fantasise about being the first in my class to be able to ride a bike (how cool I'd look), about winning every race at school (how cool I'd look), about walking into the disco, wearing the most amazing outfit and wowing every boy there (how cool I'd look). You see the emerging pattern here.

I still do it all the time now, except these days I daydream about when it's all over. My transplant, that is. I find myself picturing a new, radiant self. Mostly I picture my stomach, without the tube that is its current fixed accessory. I see a scar, yes, but that'll just be part of me, the little souvenir of this experience that I will carry forward and probably come to regard in the same way I do the scars on my forehead (from running into a wall on my first day at school, from running into the fireplace at home as a child and from a car accident when I was 15). I have also planned to tell strangers that the scar is from a shark attack as I believe this will do wonders for my street cred (how cool I'll look).

I daydream too about the simple routine of going to bed. Right now I sleep with a line from my machine (Brendan) attached to the tube in my tummy. I have to set up Brendan every night, do my three-minute hand washes, align the bags of dialysis fluid, connect them all up and then finally when it's time to turn in, there is another hand-wash to perform and then I attach myself to my lifeline.

Sleeping is one of my favourite things in the world (it allows for more dreaming) and I will never forgive dialysis for the way it ruins that pleasure for me, night after night. I love lying on my tummy. Brendan does not allow this. He beeps. And when he's not sounding his alarm bells, he makes a constant humming noise, followed occasionally by a hissing noise, for eight hours until he regards his work as done. Daydreams about a quiet sleep, not attached to that stupid machine are constant.

I daydream too about the ease with which I will perform every task once that new kidney is transplanted. About having a better fraction of the capability of a normal 28-year-old body again. I'd settle for 75%. That'd give me a good shot at actually being able to get up in the morning and get through a whole day of work and pleasure without needing a nap or feeling so exhausted by 6pm that I actually feel like I may throw up. I might also be able to exercise properly again without feeling like my abdomen is going to burst from the pressure of moving about with almost 2litres of dialysis fluid in there.

In essence, what I daydream about is normality. About being ordinary. I no longer dwell on how great it would be to look cool, but how fabulous it will be to have nothing to set me apart from the crowd. So that's where I'll be found for the coming days, weeks and months as I wait for that call for surgery. Looking out a window somewhere, conjuring images of what is mundane and unremarkable to all those who aren't marked out by illness.

Tuesday, March 16, 2010

Answers to some Frequently Asked Questions

I have considered getting these put on a t-shirt, partly to save time in conversation and partly cos I'm a sucker for bullet points.

  • Yes, both my kidneys are screwed
  • On dialysis since June '09
  • Every night, for 8 hours
  • A machine by my bed pumps fluid in and out of my peritoneum cavity
  • Through a tube in my tummy
  • No. Really. You don't want to see it
  • Give the machine its proper name - Brendan
  • Why Brendan? Don't you watch Home & Away?
  • On the transplant list since August '09
  • Average wait is two years
  • It could be more, it will hopefully be less
  • I only need one good kidney - to ask for two would be greedy
  • Yes, I still go to the bathroom, though not as much as 'normal' humans
  • I rarely feel sick
  • I constantly feel exhausted
  • I would love a kidney from you, that's so generous
  • Oh, I thought that was what you meant when you asked "is there anything I can do to help?"
  • (Awkward silence)
  • Well yes, I could ask a loved one to donate a kidney
  • No, I'm not going to do that
  • Partly because I find it impossible to ask for help
  • Partly because that person would have an excuse to solicit deadly christmas presents/birthday presents/anniversary of transplant presents/annoying favours from me for the rest of my life
  • I just wait for someone to die
  • That person will have to be in and around my age and weight and be a match for my blood and tissue type
  • What do you mean you don't have a donor card?
  • Text 'Donor' to 50050. They'll send you one.

Saturday, March 13, 2010

Hello? Testing one, two. Is this mic on..?

I don't really know where to begin. With the diagnosis? With the first furrowed brow of a GP which left me wondering in the car on the way home whether there might be something wrong? Further back than that to when I was 12 (the point at which they think my kidneys began to suffer failure)?

Or do I start with who I am, what I look like? Or who I was and what I used to look like before kidney disease whispered its cursed spell and organised my vital organs into a military coup?

All of these seem like logical starting points and yet to begin with any of them seems like trying to place order on a reality that is chaotic. The story of my life has been hijacked by an illness called IgA Nephropathy. That's as much as you need to know for now, and the posts that follow will consist of the random thoughts and occasional moments of clarity I have entertained in the nine months since I started a little treatment they call dialysis.