Sunday, October 31, 2010

The live register and dialysis

Recession has hit my treatment.

Baxter – they who are in the business of Brendans - is to cut loose almost 200 of its workers from one of its Irish factories.

This particular Baxter factory is local to my house. It was one of those brand names that popped up in my vocabulary when I was a child, and stuck there by virtue of its omnipresence in the life of the village, the town, the county.

Half the kids in school had a parent who worked there; everyone had an older sibling who got a summer job there at one point or another.

With sickness, and my starting on dialysis, I took some vague comfort from the economic symmetry I could see in my plight.

The factory that had provided employment in abundance for the community into which I was born was now supplying me with a lifeline to prevent me from dying.

Supporting local industry.

Now the factory is in trouble, itself on a life support of sorts, a good wallop of its workers preparing for unemployment.

As I have driven past Baxter over the last two years, I have often seen them coming and going from their shifts and I have wondered how much they ever consider the work they do, how aware they are of the difference their product has on the lives of people like me.

Now, after years and possibly decades of that work, they are facing their own problem in the shape of a different type of uncertainty to the uncertainty that lies before dialysis patients.

They may have children and health problems of their own and little hope of alternative employment on this side of the country that does economic depression better than others.

I wish them all well. My future lies in the hands of some soon-to-be bereaved family and surgeons; theirs lie in the hands of economic forces and the government.

One would have to say that optimism lies more realistically and comfortably with the former.

PS Many have commented on my new design. I'm glad it is pleasing to your eyeballs and credit goes to my favourite web genius, Milo Shaper. Please make use of the buttons at the bottom of every post to 'like' it for facebook or 'tweet' it for Twitter.

Monday, October 25, 2010

Some thoughts on Beaumont

It feels, in some ways, as though I’ve been adopted by a family, but they forgot to come and collect me at the orphanage.

Or as though I have been injured somewhere along the journey to the summit of Mount Everest. I have put the call for help in and I know it has been received, but I don’t know if anyone is actually coming to get me.

It has been 14 months since I was granted an audience at the transplant unit at Beaumont Hospital. This was a formality. All my tests were complete, and the surgeon signed off with his esteemed opinion that I was fit and healthy (well, relatively). I was then officially pronounced “active” on the transplant list.

Since that day, nothing. Not a phone call, not a Christmas card, no general mail-shot from the hospital, no text to assure me my name is still in their files somewhere.

This irritates me greatly. I know they communicate with my medical people every month and I know that my bloods are sent to Beaumont every three months for regular testing for antibodies.

But the communication I crave is something more direct. A line between patient and transplant coordinator. I know they have bigger things to worry about in the immediate activity of a busy hospital ward, but still, a little initiative for the hundreds of people on the transplant list would not be difficult to arrange.

An emailed newsletter every quarter, perhaps; an update on how many transplants they have carried out recently; any indication to the patient that there is a whole hive of life-saving activity ongoing in that unit and that you will eventually have your turn to benefit from it.

I know some of you will be thinking ‘why doesn’t she tell this to someone who can do something about it’. I have. I mentioned it to one of my consultants some time ago and he agreed to bring it to the attention of his colleagues in Beaumont.

This is the Irish health service however. Therefore, the best I can hope for is that some action might be taken in the next decade.

I will most likely require a second transplant in my lifetime. Maybe by then, Beaumont will have an app for the futuristic version of the iPhone, sending an alert every time an organ is donated.

Then, that phrase I used to rhyme off when I was young would make a new kind of sense.

"Every time a bell rings, another angel gets its wings".

For trivia kicks, name the film in which that line appears...

That's right. It's a Wonderful Life.

Monday, October 18, 2010

Air Rescue

Looking around the A&E, I contemplated whether I was the only female in there as a direct result of an abusive relationship.

A Saturday evening. Women everywhere united in an insane need to watch that awful, awful show, the X Factor, and women in this waiting room united by their suffering at the hands of the man in their life.

My man, of course, is Brendan.

The pain that began as soon as I started dialysis on Friday night became increasingly unbearable until the decision had to be made to wreck the weekend with a visit to the grimmest outpost of the Irish health service.

One of the perks of arriving at an Emergency Department already in the throes of a chronic illness is that you are fast-tracked through the trolley system – no hospital wants you to die on their watch.

There was speculation first that the tube had shifted inside me, that it may have somehow hooked itself on to my omentum (the internal layer of tissue that covers the peritoneum).

The agony was being felt in my shoulder - one of the hilarious little quirks of the body. Anybody on APD will know that the first few rounds of dialysis grant you a jolt of pain in the shoulder area when the machine is draining your tummy of fluid.

This was much more than a quick jolt. It felt more like a heart attack, but at that moment, a heart attack actually seemed preferable to the idea of having surgery to return to the tube to its correct position in my pelvis.

Those doctors can be such Daily Mail-like scare mongers however. X-rays revealed that my tube was behaving itself perfectly well, that it had not strayed or gotten involved with any tissue. Their diagnosis was thus downgraded from a Code Red and they told me the pain was being caused by...air.

Fucking air????

Apparently if any air bubbles leak into your peritoneum cavity through the tube, they lie there, ‘tickling’ the diaphragm and causing unmerciful pain to shoot through your shoulders.

Brendan did this to me on purpose. As I mentioned some weeks ago, I have started using extension lines to keep him as far away from me as possible. Those other abused women may banish their man to the couch, but I only moved Brendan to the hallway, and still he had to punish me.

He is now back in my room. Extension lines abandoned, sleeping again side by side.

I swear he is louder than ever now. Or perhaps that is just his form of an evil cackle, mocking me.

Tuesday, October 12, 2010

Idle thought

This post falls into the ‘curiosities’ aspect of my blog description, and it is the curiosity of crying.

Not a curiosity, you say? More a simple reaction, learned at birth and controlled with age, despite the rolling disappointments of growing up and growing old?

Well, it is curious to me. I observe the little ones in my life. The newborn with her occasional bawling episodes which are her only form of communication, telling her parents that she needs to be fed or that she wants to be changed or reminded that they are still there, somewhere in the dark.

I see how and when the two-year-old cries. She has by now realised the best way to attract attention is to let out any noise that signals distress. You can see she isn’t really upset. She watches you with inquisitive eyes and registers how you react.

This is clever, part of her learning, but it is something that her godmother will ensure she grows out of. A girl who unleashes tears to get what she wants is manipulative. The shepherd boy may have cried “wolf”, but the shepherd girl released a few big droplets of emotional blackmail and succeeded in getting the townspeople to just mind the sheep for her.

I know some who cry easily. At fiction, mostly. Or at the stories of others. This is soft crying, and it is a sign of an empathetic nature. We may be the only animals who will murder our own, but we are also the only species who can feel genuine sadness for the sadness of strangers.

I know others – those who have had more difficult lives – and they cry as the broken people do, with the kind of abandon they couldn’t apply to selfish teenage rebellion because of the situations in which they grew up.

I recall one night out when one such friend discovered her coat had been taken. She cried like everyone she loved had just been taken from her. For her and many others like her, it is never a case of crying for that moment alone, but of sobbing for every upset they have ever known.

When I think back to my father’s funeral, what shocked me out of the surreality of watching that funeral scene through the eyes of a child was the sight of grown men I had known all my life, crying. Strong men, those who always knew what to do, who were tough and hard-working and who to my mind had never discussed a whole lot with my dad other than the weather and the price of cattle.

I understood many things in those days. That people who may never converse in a deep fashion will still have a fierce love for those with whom they grew up.

I came to understand also that while crying may indeed be controlled with age, the urge – and occasionally, the irrepressible need - to just let the tears come spilling out, never, ever goes away.

Tuesday, October 5, 2010

Leaving Cert song revisited

This song was a big hit the year I was doing my Leaving Cert. Back then, all the lines seemed to sing to our excited selves as we moved on to college. Now, more than ten years later, I have tweaked it to my current situation.

If you want to remind yourself of the original, click here:

"Ladies and Gentlmen of the Transplant and General Sickness Class of 2010...
Wear sunscreen,
If I could offer you one piece of advice pre and post-transplant, sunscreen would be it
The long term benefits of sunscreen has been proven to help fend off the skin cancer that threatens you as a side effect of anti-rejection drugs,
Whereas the rest of my advice has no basis more reliable than my own meandering experience.
I will dispense this advice now...
Enjoy remembering the power and beauty of your youth; oh never mind, you already know that you did not understand the power and beauty of your youth until it was taken from you.
But trust me, you will pass many hours looking at photos from before you were sick and recalling in a way that fills you with grief just how much possibility once lay before you and how fabulous you once looked.
You are not as pale and drawn looking as you imagine.
Don’t worry about the future, you already know worrying is about as effective as trying to change blood results by chewing bubble gum.
The real trouble in your life did turn out be the last thing that ever crossed your mind; it really was the kind that blindsided you at 4pm on some idle Tuesday.
Do one thing every day that reminds you you are still alive.
Don’t be reckless with other people’s hearts; don’t put up with people who are reckless with yours
Don’t waste time on being jealous of the healthy people who surround you; sometimes you’re ahead in dealing with life’s crap, sometimes you’re behind; the race is long and in the end it’s only with yourself.
Remember the compliments you received before the nicest comment became “you’re looking well, considering...”
Forget the insults and the startled looks of those who haven’t seen you in some time -
If you succeed in doing this, please tell me how
Keep your old love letters from the time when love was easy and not secondary to sickness
Don’t open your bank statements to be reminded of how your earning power was slashed the moment you became ill
Don’t feel guilty that it no longer seems important what you do with your life
The most interesting people I know didn’t know at 22 what they wanted to do with their lives, some of the most interesting 40 year olds I know still don’t
Take your calcium acetate tablets if you are on dialysis
Be nice to whatever kidney function remains, you’ll miss it when it’s gone
Maybe you’ll marry someone who accepts you regardless of your condition, maybe you won’t; maybe you’ll defy the odds and your broken body will produce children, maybe you won’t; maybe your transplant will still be working at 40, maybe you’ll dance the funky chicken when you’re named the longest recorded living transplant recipient in the world
Whatever you do, don’t congratulate yourself too much or berate yourself too much either
The choices that are left to you now are your real chance. A little different to everybody else’s.
You must still enjoy your body, use it every way you still can...don’t hate it or be afraid of it or what other people think of the scars on it. Despite its failings, it is still the greatest instrument you will ever own.
Dance...even if you have nowhere to do it but in your own living room
Always read the directions on your medication, even if you don’t fully follow them
Do NOT read health magazines, they will only make you feel more poorly.
Get to know your parents and appreciate how your illness is killing them just as it is killing you.
Be nice to your siblings, they are the best link to your past and the people most likely to offer to donate an organ to you in the future.
Understand that friends come and go, but only a precious few will remember to call you up and simply ask you how you are
Work hard to bridge the gaps between their healthy lifestyle and your hospital existence, because the sicker you get, the more you will need the people you knew when you were young.
Try to go private once, but leave this behind before it makes you haughty; go public when you have to, but leave this behind before it makes you bitter.
Travel as soon as you have recovered from your transplant and you no longer have to bring a dialysis machine.
Accept certain inalienable truths
Prices of tablets will rise; politicians will waste the money that should be spent on the health service, you don’t know that you will grow old, but if you do you’ll fantasise that when you were young prices were reasonable and politicians were noble and children respected their elders
Respect your elders – even if they moan and you wonder how they can be so downhearted when they have made it to an age you may never see
Don’t come to rely on the support you receive when you’re sick
Maybe you have a trust fund, maybe illness benefit is enough to sustain you, but you’ll never know when the state will pump the guts of €50 billion into bailing out the banks and all social welfare will be cut
Don’t mess too much with your hair because future chemo and anti-rejection drugs may make it fall out
Be careful whose advice you buy, but be patient with those who supply it
Advice is a form of conversation that fills the gaps where ordinary people have no clue what to say to make you feel better.
But trust me on the sunscreen...