Tuesday, November 30, 2010

It's beginning to look a lot like bah humbug

Words escaped me for the last week or so. There was just nothing more to say. Or so it felt.

It’s the least wonderful time of the year for many pursuits. Dialysis is top of my list, followed closely by wallowing in what went wrong and how I ended up here with nobody to talk to.

Christmas is a big deal to me. I missed out on too many happy holidays in my teenage years, so in adulthood I have tried to make up for the magic that was lost. I drive festive tackiness in the family home. I make people wear party hats and I over-decorate the tree and I insist on any squabbles being placed to one side for that day.

My situation last Christmas did not easily allow for the creation of happiness. Affairs were topsy-turvy and unclear and unsettled. And the ‘good room’ in the family home was cluttered with dialysis fluid to get me through the holiday, not serving its usual purpose as being the space into which Christmas visitors should be ushered.

This Christmas feels no different and will be no different. In fact it feels already as though it will be worse.

But I know I should update you on what has been happening. Last week was my usual week of usual tests, but not with the usual doctor.

This woman asked different questions, the first of which was "any symptoms"?

"Why yes, doctor, I've notice there's a machine attached to me for 8 hours every day".

She placed much more emphasis on the length of time I have been waiting for transplant and asked the nurse to fetch figures on my "matchability" (it's 93%).

All keyed up from the news during the week of a living donation by keyhole surgery at Beaumont, she asked if I wouldn’t try and look into finding a donor from my family. She enforced her argument by telling me it would really be better for my general health to get off dialysis as quickly as possible.

Little revelation for me there.

My bloods were all fine anyway, thus re-affirming my title of Most Boring Dialysis Patient in the World Ever.

Last week also brought me to the Cardiology unit for a heart echo - something required by Beaumont to ensure my name remains on the transplant list for another year.

I hate heart echoes more than any other test. Aside from the embarrassment of it, there is the sound of my heartbeat to contend with, amplified and in surround sound for those twenty minutes or so.

It may seem odd that I hate hearing my pulse. You’d think I would have developed some grá for it with sickness. Hating it seems akin to a person in danger of going blind having a severe dislike of opening their eyes in the morning and seeing the sun.

I'm weird.

But I did look at the screen to see my heart thumping away from every angle, reassured to find that despite everything, it still beats.

Bruised surely, but not broken.

Onwards now.


  1. Starting my own yearly round of transplant tests soon. Appointments with cardiologists and vascular surgeons and ecgs and x-rays and massive blood work, not to mention bone-density and all the regular monthly tests. I fear I shall run out of blood. All the family gathering from around the country, many with their own problems and trials.
    I still look forward to Christmas, I am a great believer in holiday jollity, even if faked.
    Stay strong.

    Regina, SK

  2. A liver ultrasound once. I thought her hand was going to go under my ribs and get stuck there. Thankfully all was normal apart from some minor scarring.

    I remember when I did that.

  3. J Harper - They only require a heart echo from me at this stage. The two year mark on the list requires the whole gamut of tests again. I'm staying strong. Relatively.

    Holemaster - I hope there's a good story of childhood recklessness to that scarring.

  4. Is this doctor taking more of an interest? or just a different approach to the same end? It reads a bit like she's getting your hopes up, or is she just pissing you off?
    Sorry for all the questions, one just led to another.
    I'm with you on the super-pro-christmas stance, for me its all about gin and after-eights (a remarkable combination, an epic hangover). Once the booze and mintychoc staples are in place everything else takes care of itself.
    I'm waffling now, hope you feel better about christmas before it gets here.

  5. A few years ago I was in a foregin country travelling on my own and at one stage went a week (or maybe two weeks) without having a conversation with anybody at all. I started going insane (proper insane). When I did meet some poor irish fools I literally couldn't stop talking in a freakish stream-of-consciousness style for about five hours.
    The moral: pick up the phone, you have to get your voice out of your head.

  6. KFS - That doctor just didn't understand how these appointments usually go. My regular consultants don't take longer than four minutes to look me over because I am entirely boring. They also stick to their brief, which is keeping me healthy while on dialysis. Transplant is not their thing. She was just enthusiastic. And I am getting out and about, despite the snow. While I generally dislike most people, I appreciate one needs to interact with other humans. PS Love After Eights. Not so sure about the gin.

  7. I have been following the weather news from Ireland/UK over the last week. Looks like you may have a white Christmas which will cause great disruption to people's lives and plans and not be a cause for jollification except amongst young children.

    The receptionist/support staff at the Transplant clinic is quite busy (I almost wrote snowed under, which is a common metaphor here, but refrained), so she hasn't got my blood and test requisitions out to me yet (after all there is more that me on the list). They dumped all the paperwork to get out on her, then scheduled a bunch of clinic days for new patients to meet the transplant docs and get assessed.

    Had my own clinic day with the nephrologist last week, he gave me some pointers for navigating the transplant list and advancing my cause. Still having trouble overnighting with the cycler (which I refuse to dignify with a cute name) and we are trying a different therapy program.

  8. I heard you on radio discussing that book yesterday, and this story popped into my head.

    Basically, in NYC, two ambulances will now be despatched to certain emergency calls if the person is in danger of dying; the first ambulance will attempt to save the person's life, and the second is there to harvest organs just in case.

    It's a bit grim, but I think it's a bloody good idea.


  9. All these Anonymous comments are getting confusing!

    Anonymous 1 - My christening my machine was not out of any affection for it, I assure you. It's more so that I have a name to curse when it starts beeping at 3.22am, while I'm just enjoying a nice dream. Are you considering CAPD? I'm intrigued about these 'pointers' your consultant gave you for advancing your cause for transplant. Do share. I'm not above bribery!

    Anonymous 2 - Thanks for that passing that on. The story of transplant is pretty grim in general, but in cold, hard, capitalist terms, it is all about supply and demand. That book is very good. I really would recommend it.

  10. Hi Regina, I was Anonymous 1, I forgot to sign my name - J. Harper, Regina, SK. I have to go anonymous because I don't have a log-in.
    I am having trouble with my cycler because I have significant pain almost every drain cycle. I curse my machine too, I just call it "that thing|". Brendan sounds like to nice a name to give to the cyclers, maybe something like a name out of a 19th century novel for a necessary but creepy and annoying servant - Bartleby or Cyril or something like that.
    My Nephrologist just advised to keep sticking my head into the transplant office, making sure that every thing was up to date, there were no gaps in my file etc. Also to make sure that they kept seeing me and knew my name and face. The Transplant office, and the dialysis people are getting Christmas cards too. If I could bake half decently, they would get baking, but as it is, baking would likely retard rather than advance my cause.

    J Harper, Regina SK