It has not been my finest hour. These past few weeks I have been reckless, sleeping on the job - the job being dialysis and my duty being to watch my step each and every day because the divide between my life and death is not half wide enough.
The warning signs were trying to catch my attention, but I just wandered along, like one of Enid Blyton’s more challenged characters heading for a picnic in a minefield on what promises to be a thundery day.
My weight was dropping. Somewhere between the turkey dinner of last month and the world returning to work, I shed about five pounds. Another week on, and my scales was registering the lowest weight I have been in my adult life.
There were headaches too. They could have been put down to the remnants of a cold that would not go away, but the blood pressure machine poked a gaping hole in that theory. Last weekend, it hit 160/110.
My heart rate joined in. It went up to 115. Beating almost twice every second, the same way it would if I were distressed or terrified.
Not easy to sleep when your body is gone into fight or flight mode. So exhaustion also made a late entrance.
But all of these things can be ignored if you put the mind over the matter. Which is what I did, because no matter what else was going on, I simply had to make it into the place that offered paid employment every day.
When the work is casual and your bank balance is as limp as mine, you can no longer entertain sickness. You act at being able and willing and twice as enthusiastic as the person beside you.
But then the throwing up started and my vision became blurry and I started to feel a little shaky in the shower or when I moved from sitting to standing or even when I was just walking around the office.
I was having to get up half an hour earlier than necessary for work because I would need to set aside time for vomiting. That’s just not practical.
After several phone calls, progress of all sorts was made. I broke up with my consultant. The one who delivered the news of my kidney disease almost three years ago, way over there in the city that God chose as the location to test me.
It was all “it’s not you, it’s me...our long distance relationship just isn’t working...I need someone who can be there for me”.
He took it well in fairness. Referred me on to the woman who will bring me the rest of the way, to transplant and the new life beyond. Having heard my symptoms, she agreed to clear a lunchtime to see me. The tests were done and she had three guesses about what was wrong.
I like this woman. I like her proactive approach. She made changes to medication, changes to my dialysis regime. She took me off my energy injection but I will forgive her for this in time.
The worst of the symptoms are gone. My weight is slowly creeping back up and my face is filling out again. I am back to my usual throwing up routine.
I must not take my eye off the road ahead again. It’s that kind of recklessness that sank the Titanic. And I can’t swim.
Showing posts with label dialysis. Show all posts
Showing posts with label dialysis. Show all posts
Sunday, January 16, 2011
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.
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.
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.
Sunday, August 22, 2010
A good night's sleep
I have referred in posts past to my impatience for gadgetry in all its forms and with all its false promises of an easier life.
If I were present at the invention of the wheel, my initial reaction would have been a shoulder shrug and a 'Meh, what's wrong with walking?'
While some don't like change, I tend to regard it with deep suspicion. I'm not sure why. It is probably an extension of my many insecurities or my general laziness. I do like to find a comfortable groove, nestle in and stay put.
It is for all of these reasons that everyone will one day be taken completely by surprise when I take over the world...but back to my point.
I don't like gadgets and new-fangled items, but I have stumbled upon a dialysis accessory which has revolutionised the way I have been sleeping for the past 400 or so nights, since I first brought Brendan home to meet my mother.
It's an extension set for the patient line - in healthy human terms, it is basically a longer line that connects me to Brendan, allowing me to keep him outside my bedroom if I wish.
I tried it out the last two nights and all I can say is separate bedrooms may be the key to a happy marriage, but it is also the key to a better relationship between one girl and her dialysis machine.
Word has it the health authorities don't tell us about these extension lines because they add extra expense to the already hefty bill rang up by APD patients.
I have some sympathy for this and I don't wish to cost the taxpayer any more money, but good sleeps make for healthier dialysis patients and that may end up costing the health services less in the future.
So if you are on APD and you're having trouble catching your zzzs, ask for some extension sets. It almost makes dialysis bearable.
PS My thanks to Milo Shaper for alerting me to the existence of these lines and to Sonia for providing some samples!
If I were present at the invention of the wheel, my initial reaction would have been a shoulder shrug and a 'Meh, what's wrong with walking?'
While some don't like change, I tend to regard it with deep suspicion. I'm not sure why. It is probably an extension of my many insecurities or my general laziness. I do like to find a comfortable groove, nestle in and stay put.
It is for all of these reasons that everyone will one day be taken completely by surprise when I take over the world...but back to my point.
I don't like gadgets and new-fangled items, but I have stumbled upon a dialysis accessory which has revolutionised the way I have been sleeping for the past 400 or so nights, since I first brought Brendan home to meet my mother.
It's an extension set for the patient line - in healthy human terms, it is basically a longer line that connects me to Brendan, allowing me to keep him outside my bedroom if I wish.
I tried it out the last two nights and all I can say is separate bedrooms may be the key to a happy marriage, but it is also the key to a better relationship between one girl and her dialysis machine.
Word has it the health authorities don't tell us about these extension lines because they add extra expense to the already hefty bill rang up by APD patients.
I have some sympathy for this and I don't wish to cost the taxpayer any more money, but good sleeps make for healthier dialysis patients and that may end up costing the health services less in the future.
So if you are on APD and you're having trouble catching your zzzs, ask for some extension sets. It almost makes dialysis bearable.
PS My thanks to Milo Shaper for alerting me to the existence of these lines and to Sonia for providing some samples!
Tuesday, July 27, 2010
An encounter
The dynamics of the meeting were a little strange from the get-go.
Strange for me, I should say. I blame the inner dialogue of my brain. Why can't it ever just let me be?
I was lunching with representatives of Baxter - the dialysis people. It was a meeting called at their request and when you are granted an audience with those who supply the elixir of your life you don't tell them you're washing your hair.
I tried to put it in the most positive context. I made comparisons - imagine having the opportunity to sit down with RTE, UPC or Dublin Bus, the joy I would milk from telling them just what I think of their service and how they could improve themselves. It would turn into a rant, a monologue unbecoming of a lady, a scene.
But that wouldn't fly with Baxter, rage would have to be censored on its ferocious rush to translate thought to speech.
I managed nice. I possibly even excelled at small talk and dialysis jokes. But this light at the fringes did not cloak the unsettling thought that this lunch, this threesome of one patient and two professionals created an odd atmosphere.
One particular notion was on repeat, looping around, removing the cynic in me from our circle of cappuccinos to stand aside, observe and report back the uncomfortable truth.
"Pssst...These perfectly lovely people have livelihoods that are dependent on humans like you having useless kidneys. Your sickness is the misfortune that butters their bread, settles their bills, sees their children through private education".
It is probably the reason why you will never see a consultant having a pint with a patient. They make money from the negative events in our lives. You are thankful to them for saving you of course, but in the same way you are much obliged to the AA for jump-starting your car. It is a gratitude that comes from the head rather than the heart.
The logical in you is thanking them; the emotional in you can't breathe for all the sadness and words without syntax that if spoken would project from you in a scream and a twisted knot of bitterness, resentment and child-like fear. The ego and the id, Freud would quip.
I never wanted to cross paths with the HSE, with my consultants, with the good people at Baxter, with the bin men who collect my health waste, with pharmacists who just about suppress the dollar signs popping up in their eyeballs when I arrive at their counter carrying a prescription full of euro.
But they are all bit-part players on my stage now. The whole bloomin' lot of them, cashing in on the worst days of my life.
Strange for me, I should say. I blame the inner dialogue of my brain. Why can't it ever just let me be?
I was lunching with representatives of Baxter - the dialysis people. It was a meeting called at their request and when you are granted an audience with those who supply the elixir of your life you don't tell them you're washing your hair.
I tried to put it in the most positive context. I made comparisons - imagine having the opportunity to sit down with RTE, UPC or Dublin Bus, the joy I would milk from telling them just what I think of their service and how they could improve themselves. It would turn into a rant, a monologue unbecoming of a lady, a scene.
But that wouldn't fly with Baxter, rage would have to be censored on its ferocious rush to translate thought to speech.
I managed nice. I possibly even excelled at small talk and dialysis jokes. But this light at the fringes did not cloak the unsettling thought that this lunch, this threesome of one patient and two professionals created an odd atmosphere.
One particular notion was on repeat, looping around, removing the cynic in me from our circle of cappuccinos to stand aside, observe and report back the uncomfortable truth.
"Pssst...These perfectly lovely people have livelihoods that are dependent on humans like you having useless kidneys. Your sickness is the misfortune that butters their bread, settles their bills, sees their children through private education".
It is probably the reason why you will never see a consultant having a pint with a patient. They make money from the negative events in our lives. You are thankful to them for saving you of course, but in the same way you are much obliged to the AA for jump-starting your car. It is a gratitude that comes from the head rather than the heart.
The logical in you is thanking them; the emotional in you can't breathe for all the sadness and words without syntax that if spoken would project from you in a scream and a twisted knot of bitterness, resentment and child-like fear. The ego and the id, Freud would quip.
I never wanted to cross paths with the HSE, with my consultants, with the good people at Baxter, with the bin men who collect my health waste, with pharmacists who just about suppress the dollar signs popping up in their eyeballs when I arrive at their counter carrying a prescription full of euro.
But they are all bit-part players on my stage now. The whole bloomin' lot of them, cashing in on the worst days of my life.
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.
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.
Monday, May 10, 2010
Send in the Clowns
Ambitions unrealised.
So many of them, I don't care to count. And this feeling that can't be shaken that they won't ever happen now, because I'm just too tired.
It is to my deep frustration that all my childhood I was waiting to do things "when I get big", but then I grew old before I grew up. I may still be in my twenties, but I missed the middle part, the bit that lies between having hopes and gaining hindsight. That's the important phase. That's where you define yourself.
It seems like all my potential is lost. Perhaps it was stored in my kidneys and now it too has failed or is chronically impaired.
The goalposts have of course shifted considerably. Ambition to succeed has been overshadowed by a more basic desire to just survive and feel well again, but there is still regret for the life I thought I would have and the person I thought I would be.
Now I'm defined by a medical condition. Never more so than when in hospital when the semi-circle of junior doctors forms around my bed and I'm presented as an "end stage" or a "stage five".
I just wish I had known. If I had been given some hint that it was coming, maybe I would have spent less time messing around and more time making it count.
Those who know me will say 'nah, you really wouldn't have Reg'. They're probably right. But maybe I would have surprised everyone. Most of all myself.
So many of them, I don't care to count. And this feeling that can't be shaken that they won't ever happen now, because I'm just too tired.
It is to my deep frustration that all my childhood I was waiting to do things "when I get big", but then I grew old before I grew up. I may still be in my twenties, but I missed the middle part, the bit that lies between having hopes and gaining hindsight. That's the important phase. That's where you define yourself.
It seems like all my potential is lost. Perhaps it was stored in my kidneys and now it too has failed or is chronically impaired.
The goalposts have of course shifted considerably. Ambition to succeed has been overshadowed by a more basic desire to just survive and feel well again, but there is still regret for the life I thought I would have and the person I thought I would be.
Now I'm defined by a medical condition. Never more so than when in hospital when the semi-circle of junior doctors forms around my bed and I'm presented as an "end stage" or a "stage five".
I just wish I had known. If I had been given some hint that it was coming, maybe I would have spent less time messing around and more time making it count.
Those who know me will say 'nah, you really wouldn't have Reg'. They're probably right. But maybe I would have surprised everyone. Most of all myself.
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".
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".
Tuesday, April 6, 2010
Screenplay
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
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
Thursday, April 1, 2010
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??!
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??!
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:
http://www.irishtimes.com/newspaper/health/2010/0323/1224266870184.html
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:-)
http://www.irishtimes.com/newspaper/health/2010/0323/1224266870184.html
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:-)
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