Sunday, April 25, 2010

Conspiracy Theory #1: The government is trying to kill me

It has not escaped my attention that at a time of recession, people like me are a blight on the nation. I mean sick people - those of us who require costly treatments that weigh down the national debt and who don't contribute much by way of taxes.

When I say it has not escaped my attention, this is primarily because some who claim to love me and to be my friend call me names like "leech" and "parasite on society" and say things like "would you not just go quietly now and save us all a bit of money". With friends like these, etc, etc.

By my reckoning, if this has occurred to the knuckle-headed humans I hang out with, then it has to have occurred to at least one bitter and twisted junior civil servant at the Department of Finance. Thus my first conspiracy theory which I present here today. The government is trying to kill me.

My proof for this is a mixture of the circumstantial and the far-fetched, but I'm keeping notes on all strange happenings just in case I ever need to present myself at the European Court of Human Rights. Or in case I ever get my number one wish which is to appear on RTE's 'Would you Believe'.

I don't wish to document al those happenings at this point in case Big Brother is monitoring my blog, but here's one example taken from my diary last summer:

"June '09. Admitted to hospital to await surgery to implant catheter in tummy. Nurse meets me and tells me I have a whole ward to myself at the very end of Unit 1. Initial delight turns to suspicion. You never get a ward to yourself. You always have to make like a sardine and cram yourself in beside Granny Bonkers and Great Aunt Lunatic.

It soon becomes clear that they want me isolated. They have a so-called "high security" male patient in the unit also.

4.20am Awake to find mental man standing in the middle of my ward. I scream. The guard who is meant to be minding him shuffles in and apologises. Inspection of room in the morning reveals a strange substance spilled all over the floor. Anthrax?

Day two. Wander to TV room for some light entertainment. Mental man enters, accompanied by nurses' aide. He is writhing around and suddenly lurches towards me in an attack. Were it not for my being so nimble and gazelle-like in my motions, it could have got ugly.

I resign myself to steering clear of the TV room, sleeping with one eye open and telling all lies necessary about how I am feeling in order to secure my discharge.

Suspect said patient was an agent of the government, sent to knock me off. They do not want another dialysis patient in the country. Must avoid admission to hospital at all costs and ensure when time for transplant comes that I am accompanied at all times. Preferably by an ex-army type or someone trained in the use of pepper spray and high voltage stun guns".

Sunday, April 18, 2010

Some Things I've Learned

I'm sure there are still many things to learn, but these are some pointers I've picked bullet point form (obviously)

# Looking for answers on why you got sick - and finding them - doesn't do anything to make you feel better. Knowing the source doesn't change the present reality.

# You should not distract a junior doctor while he is trying to insert a needle in your arm. They don't sleep much. Concentration is key or expect to see much blood.

# Ear plugs are the difference between sanity and madness when in hospital

# The little, material things in your life don't matter

# Worrying about the accumulation, security and improvement of the little, material things is what normality is and you will miss that

# You can get used to anything, no matter how difficult, no matter how alien to what your life was like before.

# One day you will find yourself speaking effortlessly about medical terms and procedures and having yourself opened up and patched back together and it will shock you how ordinary those words now seem.

# The easiest way to pass time in a waiting room is to size up the others around you and try and guess what's going on with them. It's far more interesting than outdated magazines.

# Consultants will always want to shake hands with you at every appointment, even though you have been introduced and he/she knows every detail about the inner workings of your body. I think this is an etiquette thing.

# Waking up from an anaesthetic will grant you the most disorientating, queasy moments of your life. You will vomit.

# You should never, ever read about your illness on Wikipedia or on any other website. The people who write these things have a particular fondness for the term "potentially fatal" and they appear to have misplaced any favourable statistics on people who have lived with your condition and done quite well

# You should never, ever read about the possible side effects of your medication. Just take it that the operation of heavy machinery is off the cards for a while.

# When sick, you will spend your time striving to be normal. You will try to work as normal, socialise as normal, eat as normal and exercise as normal.

# The biggest challenge is to realise that life isn't normal anymore and make the necessary adjustments. When that is done, you have reached the point of acceptance.

# Nobody in your life will care about you the way your family - especially your parents - do.

# The line between those who will acknowledge you are sick and say something encouraging and those who will make you feel like Death just typed your address into his SatNav is very fine. Few people know the right thing to say, but be patient with them.

# There is an immediate level of understanding with other people who have your illness or even those who have any illness at all. Maybe cos we feel a little like the lost souls of society. A kind of sick Glee Club, without the killer dance moves.

# When you lose sight of the light at the end of the tunnel, remind yourself the pain/bout of nausea/bad night on dialysis will eventually go away. A favourite phrase I have now and one I repeat to myself a lot:
"This Too Will Pass".

Wednesday, April 14, 2010

A commercial idea


I have tonnes of them.

So many, I could open my own little shop and sell them. I reckon there might be a market for it. The homeless, for one. People moving house. Children who always prefer the packaging to the actual toy.

"Parents - this christmas, save some money and give the kids what they really want - a nifty set of boxes"

The source of these pesky items in my life is a company called Baxter. They supply all the dialysis equipment and fluid needed by Brendan and they arrive at my place every two weeks to deposit another mountain of boxes in the space most normal people would reserve for a dressing table or a wardrobe or a cardboard cutout of Barack Obama.

I have long since prophesised that if Kidney Disease doesn't kill me, I will probably die as a result of a box accident. One day, I'll go to drag one of them from the stack in the spare room and they'll all come tumbling down on top of me.

Each box weighs approximately 20lbs and just after delivery there would be approximately 35 of these neatly piled in one corner, so it wouldn't take much to knock the breath out of my lungs and do me in.

"Here lies Regina - her kidneys failed, but in the end, it was re-enforced cardboard that killed her. RIP".

Sunday, April 11, 2010

It's all fun and games - ya, whatever.

It may come as news to many of you to learn that there is such a thing as a Transplant & Dialysis Games - our own version of the Olympics, without the drugs scandals (we're all shamelessly doped to the eyeballs, there's no point in them trying to police it).

The participants are those of us who like to not only defy God by living longer than he clearly intended with the aid of man-made devices and interventions, but who like to run around tracks, hollering about the fact that we have cheated him (yes, we know he'll still get us in the end, but in the meantime, we enjoy the gloating).

The Games are for everyone who had a tranpslant and those on dialysis, all age groups, all levels of fitness and capability. The purpose is to highlight the difference organ donation makes to our lives and also to keep us healthy and fit while we continue to cheat Death.

That's the official line anyway.

In reality, it's all about the gold. It's about winning and crossing the line ahead of the rest and having all the glory that Sonia O'Sullivan missed out on due to various stomach-related illnesses (that excuse doesn't really fly in our Games - we see her "food poisoning" and we raise it "organ failure").

Ok, I may have a slightly competitive streak. I am in fact currently observing a self-imposed ban from the game of Scrabble because I tend to become a monster when presented with a tablet of letters and a challenge to beat everyone else with the words I create.

But personally, it would make me feel like even more of a sick person to be patted on the back just for making it from the changing room to the start line without needing an oxygen mask.

I probably won't win anything at the Games*, but then I'll reserve the right to be really annoyed and behave as the brother does when his football team loses a match - you blame the weather, the opposition, the ground conditions, your footwear, your old injuries and then you stop speaking for two days.

My body may be sick, but my mentality is still the same. You play to win. Period.

Note: The Games take place in August. If you never hear me mention them again, it's because I went out and lost in spectacular fashion. I will then be eating all these words along with all my words from many aborted games of Scrabble.

Thursday, April 8, 2010

Could I...? No

One of my best friends, who currently lives in New Zealand sent this on and has suggested we start a collection to buy me a kidney. It's all the rage for Kidney Diseased Kiwis, desperate for a new organ in a country which rates very poorly when it comes to giving the gift of life.

Personally I don't like the idea of my surgery being performed on a rock in some jungle, with nothing but a few bottles of vodka for an anaesthetic and some class of a tribal leader slicing me open to work a bit of black magic and voodoo, with some two-bit translator trying to handle the communications between us.

Me: "They're sure it's a kidney, yes?"

Translator: "You got the liver from the goat, yes?"

Tribal Chief (grinning proudly): "Our finest pancreas from our finest mountain llama"

Nor do I feel comfortable with paying some poverty-stricken individual the price of a second-hand, third-rate motor vehicle for one of their vital organs. I'm not a great believer in karma, but even I would spend my life waiting to be struck by a bolt of lightning if I went through with that.

I would however like to see the look on my doctors' faces when I just dropped off the dialysis radar and they received the following postcard a few weeks later from Outer Exotica Land:

"Lads, I'm sorted. Went for a more direct route for a new kidney. The surgery was a bit hairy at times, but nothing the HSE wouldn't certify as above-board. Will be home soon. Weather great. Regina

PS It's normal to be paralysed from the waist down for a few weeks, right?"

Tuesday, April 6, 2010


I've had an idea.

For a vampire movie.

Seriously, I can't believe nobody has thought of it before - dialysis patients could totally cash in on this genre of film that is elevating teen hormones across the globe.

The plot is still a little sketchy, but the gist of it is:

Vampires are taking over the world - the thousands of screaming girls wearing t-shirts with the slogan 'Bite me Edward' get their wish and go the same way as Bella Swan, thus creating a pandemic that over-runs the world in a way that Swine Flu just didn't.

Authorities are on their knees. Horny adolescents everywhere are turning into blood-sucking monsters and there seems to be no way of killing them (sharpened stakes are ordered, but Amnesty International protests and the whole thing gets caught up in the courts).

Enter the dialysis patients of the world. They are called upon to stop this deadly curse. How? They are 'planted' by governments in the areas populated by the young beasts. As every Twilight fan knows, the newbie vampire is insatiable and ill-disciplined. They smell this new scent of blood and are curious.

They pounce, they can't help themselves, but just a few drops of the toxic blood is fatal to them. They die instantly and the dialysis patient moves on to the next pack to carry on his/her patriotic work. The dialysis patient becomes a little anaemic at the loss of some blood (cue scene where the bloodied, heroic patient slumps into a safe-house somewhere, knots a dirty kerchief around his/her arm and shoots up with some EPO before moving on).

The film ends with plaudits, presidential awards and every dialysis patient being granted a transplant from citizens, so grateful at not living in fear anymore that they are willing to part with an organ for the new heroes of society.

The End

Sunday, April 4, 2010

An Easter Message

A letter.

I rarely check my post, easily irritated as I am by unsolicited mail with all its empty promises of a toned body, more pizza than all four of the Teenage Mutant Ninja Turtles could ever stomach and a special offer indoor skiing machine at one of those German supermarkets.

But today, I did, and within I found a rare gem. A personal letter from someone I don't know but who knows my people. She is a wife and a mother of transplant recipients.

It is her daughter, Jeanne's story that she shares. It is similar to my own. Diagnosed in her twenties, long, dull days of needles prodding for veins and blood being cleaned out by dialysis.

The same feelings of frustration and a struggle to hang on to hope. But then surgery and a new kidney and the sensation of having traded in her old body for a shiny, new model.

But the story doesn't end with that. Enclosed in this letter is an added surprise. A photo. Caption: "Christmas '09 - Jeanne with her baby son, aged 3 months"

It is a happy story and it is a 'resurrection' that means more to me this Easter Sunday than any tale told down the road in the parish church.

Thursday, April 1, 2010

PS Check out my new design

A big shout out to Milo Shaper for re-designing my blog for me. He even managed to find a picture of one of Brendan's cousins for the header (Brendan himself doesn't pose for photos...he's kinda like Hugh Grant/Bjork when it comes to cameras...gets very violent and precious).

Milo Shaper is also the current reigning Thumb War Champion of the World. Some people are just born with an array of talents.

Medication - past and present

This won't mean much to those of you who don't have kidney disease, but for those who do I hope it will serve a purpose. In the conversations I have had with transplant recipients, I have noticed that a lot of people tend to forget the specifics of their illness and treatment prior to their surgery. Understandable. Nobody wants to dwell on the time in their life when they were most sick. The memory plays one of its helpful tricks and files such details away in that dusty cabinet where it sends the not-so-nice information it hopes it will never need again.

When I look back on the last two years, I too find myself starting to forget the finer details of what went on when I was first diagnosed. This is therefore intended as a record for myself, as well as an aide for anybody who might be starting on the road to dialysis and transplant.

So we return to that first evening in the consultant's office. The bad news has been delivered and now he switches into action mode. He is scribbling down my first prescription, issuing orders of when to take what. A list of names that mean nothing to me. I nod and take it and shake his hand. What am I thanking him for?

Then the surreal moments where you talk to his secretary. The matter of payment and a next appointment. What? Money? Of course. She sees tears and says it's grand, you can send a cheque in when you get the chance.

A silent car journey to the chemist. The phone is ringing. A mother frantic with worry, wanting to know, but terrified to hear it. I can't talk to her yet. Standing in line at the chemist, patiently waiting my turn, looking around at the others holding scripts at the counter, seeing myself now as part of this new club.

I step up and hand in my long list. I expect a reaction, for this pharmacist to look at me, all young and healthy and express surprise at this mass of medications I come in search of, but there's nothing. It may be new to me. It isn't to them.

Enough rambling. My initial treatment consisted of four Omacor fish oil tablets a day (two in the morning and two at night), two blood pressure tablets (Zanadip 20mgs and Coversyl 5mgs), Lipitor (10mgs), Aspirin (75mgs). I have a feeling I was on something else at this point, but I can't for the life of me remember what it was.

In the first year, I also received infusions of iron in the hospital every couple of months to help with my anaemia (my haemoglobin level went down to about 9...not too low, but low for me).

The Aspirin was reduced to one every other day in no time at all, due to the fact it was causing me to bruise very easily. I quickly started to look like someone was kicking me around the place every night. I can't entirely blame the Aspirin for this however. I do have a remarkable knack for failing to navigate around furniture and for misjudging my distance from immovable objects.

This was my regime for the first year after diagnosis. The only additions came when I was put on Furosemide 40mgs (to stop fluid retention and give my blood pressure a helping hand) as my kidney function worsened, and also Sodium Bicarb (the most horrible tablet ever because it does taste like salt and baking soda mixed together and it doesn't exactly slip down your throat so much as half-choke you).

When I had my surgery to implant the catheter in my tummy, everything went a bit haywire. First of all, it took them 2 hours to implant the tube - it should normally take about 45 minutes. They figure that was the reason why I got an infection from the surgery and why I was re-admitted to hospital two days after being discharged with vomiting and severe abdominal pain.

All that stress on my body made my blood pressure go crazy again. The Zanadip stopped working and in fact started to give me a racing heart and palpitations. There were times when I couldn't sit still or lie down or do anything for hours after taking it because I could feel my pulse hammering through my body. Very uncomfortable.

So that was changed, and I was put on a new regime with the commencement of dialysis and that has remained pretty much the same for the past 10 months:

Calcium Acetate - 3 times per day with meals to stop the body absorbing phosphate.

Cardura - for blood pressure, I was first on 8mgs a day when my bp was very high (it was an average of 170/125 in those days). It was then reduced to 4mgs and then stopped altogether when my bp stabilised with dialysis.

Rampiril - for blood pressure...initially on 5mgs per day, reduced to 2.5mgs per day now because my bp was dipping too low (down to 90/50 at times which led to a lot of dizziness and fainting).

Lipitor - 10 mgs

Folic Acid

Vitamin B,C and D tablets

(The vitamins and folic acid are necessary because along with taking all the evil toxins out of your system, peritoneal dialysis also removes a lot of the good stuff)

I also give myself a 30mg injection of Arenesp every three weeks for energy...I was on NeoRecormon every two weeks but they stopped this because my haemoglobin jumped too high and this can put your heart at risk. The Arenesp is a poor comparison to the little kick I used to get off the pure stuff.

I wear sunscreen if I am going out in any kind of warm weather due to the risk of skin cancer post-transplant. The dermatologist advised that this would be a good move as I have fair skin and a lot of moles and would be deemed to be high risk.

Oh, and they stopped the Aspirin altogether cos even with taking it every other day, I continued to look like someone's punchbag. Any bruises I collect now I can only put down to my own, unfortunate clumsiness.

Now....any questions??!