The unmentionable has happened!!!! April 11, 2007Posted by scartissuemark in My Life, My Self, The Life and Times of Me Myself and I.
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I GOT MY TRANSPLANT….
On the evening of Febuary 13th (mums birthday) i received a call from harefield asking if i’d like to come in for a tansplant. After a few hours of wainting to see if the two lungs were viable for transplantation, it was on.
And so it happened, the first two weeks post-op were the most frightening, mystifying and spiritual experiences of my life thanks to the hallucinations i had…
As i was in and out of consciousness parts of the real world intruded on my visions. The most memorable visions were of the room and its fixtures which would stay the same but the view through the window and the colours of the walls would change from dream to dream. It was like a game that needed solving, each vision would have a goal in order for me to pass onto the next vision and i was under the belief that if i solved the mystery i would ascend to a next level and meet god. i interpreted the male nurse in the room as Jesus, i asked him his name and (in my psychosis) he wrote it on a wet paper towl and folded it and tore it and placed it on the window so that if i removed it it would break apart, because i’m not meant to know it was him.
One vision was of me eating crisps and gulping down coca-cola, as i did so i would struggle to breath and the nurse would squeeze this tube that look like intestines and i would breath easier again, this was like a lesson to eat more healthily.
Another vision i guess i had when i was fighting off one of the masks was that a ball shaped object was placed over my head and i was struggling to breath and then my head got turned inside out and i was in a big meadow breathing the freshest of air.
Another was that the writing “Get well soon uncle mark” on a card my nephew made became more round and legible as i fought to become stronger, as i fought and the writing becamee longer and longer and was lke an setence, then a paragraph, it was like a visual representation of myself living longer, i also saw my sister being informed of my death as the nurse stood beside me and told me i have to keep breathing for them. My most memorable was my nephew Riley attending my funeral dressed in black, only he was grown-up.
After the hallucinations passed i was on all kinds of breathings machines; Ventilatior, Bi-Pap, C-Pap, i could eat or drin. My mouth was so dry my skin waas peeling off my lips, i was obssessed with wanting to have some juice, all i could have was an inch or so in a cup and have a sponge of it and then spit it out because i couldn’t swallow.
Slowly but surrely i got better, it took three of us to get me out of the bed and onto my feet for physio. i had lost pretty all of my muscle in my legs as i was laid up in bed in the ITU for about 4 weeks. eventually ai started stumbling about, the chest drain tubes came out one by one and i was taken to the ward for the remainder of my recovery.
Up on E-Ward i was weened off of the machines and moving about more to build my strength up. It was so hard at points and i had a few breakdown and cry moments when the pressure and loneliness and despiar would set in, when i felt that i couldn’t progress any further…
Brown’s Baby Blues November 30, 2006Posted by scartissuemark in The Missing Building Blocks - A Life in my Lungs.
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‘For those who have heard the news of British MP Gordon Brown and his wife having a child diagnosed with Cystic Fibrosis and have subsequently done a search and come across my blog, i have the below statement for you’…
My Mum was very interested in the news tonight and told me of the diagnosis. Obviously little Fraser is gonna have trouble with his illness much like all of us do, but i’d like to share some insight that hopefully will inform everyone that CF is not all doom and gloom.
1. If Fraser attends the Great Ormond Street Hospital as i did, he’ll be treated by some lovely poeple, meet and interact with other sufferers, play games, and have fun in there.
2. There are many CF people who do not present with some or all of the known symtoms, such as having to take Enzymes with meals, or even frequent chest infections. This can lead to a great state of health throughout childhood and adulthood as some only attend hospitals once or twice a year and lead “normal” lives.
3. NOW is probably the best time to be born with CF. In 21 years, when Fraser is my age, he will have available two decades of new research and medications and treatments. I had and elder brother who died before i was born with CF, he died at age 8. Because of new treatments, funds and awareness, i, like many other have liveda much longer life than those before us.
And future generations will live much longer than i will, which isn’t great news for me, but hey, ‘the children are our future’…
I’M BACK October 31, 2006Posted by scartissuemark in My Life.
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So, I didn’t end up going back in on the 16th, but after no improvements and a little bout of shivers, i had to go back in as a patient the following week, and am so glad i did.
Not only did i get better but i am now back to my regular health line.
It was such a scare that i’m gonna double my efforts at home with my treatments. I couldn’t even walk to the bathroom on O2 without losing my breath for ten minutes. You live like that and you damn well appreciate the health that you had, and that i now have back.
I’m back in spirit, my body may not come back though. October 13, 2006Posted by scartissuemark in The Missing Building Blocks - A Life in my Lungs.
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After three weeks of feeling terrible in hospital, i am finally home, now merely feeling bad…
This was my worst admission ever. At first my problems were a chest infection from my usual bug (pseudomonas) and my Oxygen saturations in my blood were low and even lower at night which is what was causing my headaches. I have had to be placed on an oxygen supply, this happens 24/7 now. This is because my lungs are too scarred or weak or full of phlegm to breath in and supply my heart and brain with O2, this causes struggling of my organs especially my heart.
I had always associated going on Oxygen with pre-death, everyone i know/knew who was on Oxygen has died. After oxygen treatment there is the ‘Bipap’ breathing machine’, transplantation and that’s it, no further treatments are available.
As the admission progressed i felt better, then began getting high temperatures, the chills, and the the sweats, i then started feeling unwell again and am only a little better now that i’m home. I have to go back up to the hospital on Monday and may have to go back in or change my IV antibiotics to do here at home. One thing i’m concerned about is that this is as well as i can get now, that i’ve dropped a step in my health, cannot go back and just have to get used to it.
I went a little stir crazy in there after the second week, i had my music, my DVD’s and my psp with me, as well as some books i’ve been meaning to read and yet i couldn’t concentrate on anything, it feels better being at home but i think i’m a little depressed, I don’t get any enjoyment from anything around the house that i used to, except my comfy bed.
Ill fated return September 17, 2006Posted by scartissuemark in My Life.
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Well what stared as headaches in the mornings has now becoming a full ill-feeling chest infection.
Looks like i’m off to hospital in a few days. Two weeks of boring, tiring work and terrible food, but at least i’ll feel healthy for a fortnight or so afterward.
If i manage to survive, this may be what is in store. September 9, 2006Posted by scartissuemark in My Self.
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One day, after living many more years than i expected to, i may look back to all of the years of worry, concern, fear, and endless thought and realise that’s why i look like this…
Pondering the beauty of what Life holds September 7, 2006Posted by scartissuemark in My Life.
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Yesterday i went to Harefield hospital for my six-monthly Transplant assessment. I have been on the TX list for a double lung transplant since July 2005, since then i have had one false alarm and a false alarm phone call.
Over the past few weeks i have been indoors almost all of the time, i think it’s for this reason that my nervous demeanor for the appointment turned to a peaceful calm as soon as we hit the road in the ambulance transport. While driving up the high street i stared out of the window at all the people going about their lives, I don’t know if it was the ambulance, the sunshine or the music in my iPod, but looking at them just walking and talking made me see a real beauty to life that i’ve missed out on for a while. Once we hit the motorway i was blissfully happy, this being an odd occurrence for me. We drove fast and i felt mesmerised by the whizzing lines of the tarmac surface of the road. The noise, or hum you might say, was refreshing and took me back to childhood memories of falling asleep in the back of my aunties car, hearing the tyres roll over the gravel roads of Limerich, Ireland. The scenery almost made me weep, the countryside, the green and yellow fields as far as i could see, the cattle, the farm buildings, it all illuminated what life offers. There was a large lake on the way and small neighbourhoods of old-fashion cobblestoned, cream painted houses and pubs with ponds in the rear with walkway bridges. At the hospital after the boring tests i ate lunch on a bench staring out at the field behind the hospital. It was all so relaxing and calming.
I found myself thinking to my contentuous dreamlife… Back in Ireland, in a house like my granddads (only a little more modern), gravel roads, open spaces of lush land, where you can hear visitors minutes away. A garage holding a ’66 Chevrolet Corvette in white with a red leather interior and a black sleek Suzuki motorcycle. A sofa in the field behind the house. A cabin with a desk so i can be inspired as i write. A beautiful, loving wife and baby daughter to share it all with.
That’s my dream
As for the rest of my TX assesment, my tests and stats have remained very solid and all is well unitl i get the call or…
A Brief History of that man in the mirror June 29, 2006Posted by scartissuemark in My Self, The Life and Times of Me Myself and I.
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At this point i realised i was outside.
My memory is kinda hazy but i swear that bear was evil. He never closed his eyes, was alway staring, creepy.
The joys of that colour box
“I can walk, and look at that these nappies slips right off my legs. Thats more like it, Ahhh
“My best friend’s name’s Thomas, he’s an engine, what’s your name?”