Friday, 20 January 2012
Life, lungs and more deterioration
Well since my last blog I spent more time in hospital, day before new years eve I was rushed in blue lights with a grotty chest infection. Felt so done in and really a bit annoyed that I hadn't managed new year out. I guess I can't be greedy tho as I got the first Xmas out in 3 years. And then was my birthday on 7th January which thankfully I managed to escape for with a lot of persuasion and begging on my part. I had a wonderful day and received lovely gifts and cards from all over. I also got the cutest little kitty ( well actually my sis got one too so we have two 8 wk old bundles of fluff running around 😉 My good days didn't really last that long, I was up for a MOT (as I like to call it) LF and Anti Ige injections on 10th. The results weren't what I'd hoped. My LF is down to 17% and I'm now in severe stages of COPD and nothing else can be done. Needless to say my emotions were all over the place, and I was crying at slightest thing. This coupled with the fact I had started producing the most illumious green mucus from my chest made me see sense and see the Dr. She wasn't at all impressed and trip no 2 of the new year to resus. Resus was all bit of a blur and ITU wanted to ventilate but I knew I could manage on cpap so after being whisked round to ITU and being hooked up to cpap I eventually started to settle down, amminophyllin, ventolin, magnesium, hydrocortisone the works I eventually managed with some TLC to breathe a little. I moved to resp ward few days later and that's where I'm still at now. Just got most IVs stopped today, but got told I'm too poorly for bronchial thermal plasty. Which was something id been clutching to for a good while. I started on kenalog IM steroids today which is a add on to pred and can just give u a wee boost. I've whittled on enough so I'm sorry to have bored you stupid. So until next time. Just keep swimming! 😉
Tuesday, 27 December 2011
Giving Blogging a go?
So here goes my first time blogging. I guess I've never really thought that I had anything really worthwhile writing, or more to the point that anybody would want to read. I read peoples blogs, some with lung conditions, some with eating disorders and I find them extremely helpful to me. So I'm thinking that even though I might think what I write isn't that great or interesting, maybe someone out there will read it and be able to relate and find it helpful.
Sometimes I forget how different my life is compared to most young woman my age. I have always lived it like this, so its pretty normal to me. Brittle Asthma has been part of my life for as long as i can remember. Even before I started spending time in the Sick Kids Hospital every few months.
You see Brittle Asthma already had a devastating effect on me and my family. My Mum died aged 29 from a severe attack when i was 8 years old and my sister 5 years old. Twenty years ago now yet I remember it like yesterday. She had been poorly through the night and had asked me to set up her nebuliser. I set it up and put it in the kitchen for her. She had asked me to phone my gran to come over but we didn't have a house phone at the time, so i had went to a neighbours house. When i came back mum was lying on the kitchen floor, grey and unconscious. I panicked and grabbed my sister and ran from the house to get help. That was the last time i saw my mum. She was pronounced brain dead a few days later in the Intensive Care Unit. Mum was a organ donor and saved 5 lives the night she got her angel wings. I'm so thankful that somewhere out there my mum lives on and 5 people had the chance that night to wake up to a healthier life.
I can remember my first severe attack at the age of 6, I had been poorly with the cold and had begun to get really breathless and was sent home from school. I don't remember much from when the ambulance was called but when i woke up in Intensive Care I clearly remember having a very sore throat. I now know that I had spent three days on a ventilator and had become very sick extremely quickly. From then on ward 6b became more of a home from home than a hospital. Every few months i would be admitted spending around 10 days in hospital. Nebulisers, medication, peakflows and epi pens had became a huge part of my life. By the time I was going to high school, I not only had my bag for school but a bag full of pills and potions too. School had became harder and harder to keep up with, a perfectionist I hated being behind on my work. Although I attended School in the hospital most days i was never well enough to concentrate. I hated not being the best and not being able to attend school made me fall into the grips Anorexia. My world was so out of control, the one thing i thought i could control was food and what went in my body. My weight quickly dropped and it was picked up on one of my monthly appointments to the Brittle Asthma Clinic. My respiratory nurse at the time was concerned about how much i had lost since my last visit. After a few months it became clear that i couldn't hide the fact that I wasn't eating. My body was picking up infection after infection which was resulting in more frequent admissions to Intensive Care. It was decided that I had to be admitted to a adolescent psychiatric unit. I was 12 years old. The youngest on the unit full of teenagers with a mix of psychiatric conditions. I was placed under a six month section and had my first encounter with the dreaded Naso-gastric tube. The taste of plastic and the smell of osmolite became all to familiar. My time in the adolescent unit was coupled with emergency admissions to the local general hospital for my asthma. Sometimes i didn't know where i was waking up i was shipped about that much. I spent the majority of my teenage years in the unit or in the sick kids hospital. When i was 17 I was transferred to adult services. Gone was the fluffiness and protected little world of the kids hospital, thrown in to the deep end of the adult hospital. Admissions were a lot less pleasant and the reality of how serious my lung condition was hit home. Medication regimes became more and more, admissions to Intensive Care became more frequent and lengthier. Sub-cut bricanyl was added to my ever growing list of medication, and shortly after that oxygen at night. Ng feeding was now part of my everyday life to stay on top of my weight. I had several admissions to Eating Disorder Units but my Anorexia was diagnosed as 'chronic' and 'untreatable' and I'd be sent home to continue with feeding.
My Lung function has continued to deteriorate to where I'm at now, my LF is 25% I am on 24 hour oxygen along with s/c bricanyl 24/7 my medication list is forever growing to the point i take medication to counteract medication side effects! On a good day i can go out as long as i have my liquid o2, on my not so good days i sleep and sleep, hoping not to wake up in hospital.
I guess reading this back i can see my life is different from most peoples, but i have never known any different and i can either choose to keep fighting or wallow in self pity at the fact I'm not 'normal'. And the people who know me will know i ain't the type of person to think woe is me, yes its tough but I've come this far and I'm not a quitter! And i don't intend to start now!
So buckle up, and smile and join me in my journey!
Muchas Luv Gilly x ;) <3
Sometimes I forget how different my life is compared to most young woman my age. I have always lived it like this, so its pretty normal to me. Brittle Asthma has been part of my life for as long as i can remember. Even before I started spending time in the Sick Kids Hospital every few months.
You see Brittle Asthma already had a devastating effect on me and my family. My Mum died aged 29 from a severe attack when i was 8 years old and my sister 5 years old. Twenty years ago now yet I remember it like yesterday. She had been poorly through the night and had asked me to set up her nebuliser. I set it up and put it in the kitchen for her. She had asked me to phone my gran to come over but we didn't have a house phone at the time, so i had went to a neighbours house. When i came back mum was lying on the kitchen floor, grey and unconscious. I panicked and grabbed my sister and ran from the house to get help. That was the last time i saw my mum. She was pronounced brain dead a few days later in the Intensive Care Unit. Mum was a organ donor and saved 5 lives the night she got her angel wings. I'm so thankful that somewhere out there my mum lives on and 5 people had the chance that night to wake up to a healthier life.
I can remember my first severe attack at the age of 6, I had been poorly with the cold and had begun to get really breathless and was sent home from school. I don't remember much from when the ambulance was called but when i woke up in Intensive Care I clearly remember having a very sore throat. I now know that I had spent three days on a ventilator and had become very sick extremely quickly. From then on ward 6b became more of a home from home than a hospital. Every few months i would be admitted spending around 10 days in hospital. Nebulisers, medication, peakflows and epi pens had became a huge part of my life. By the time I was going to high school, I not only had my bag for school but a bag full of pills and potions too. School had became harder and harder to keep up with, a perfectionist I hated being behind on my work. Although I attended School in the hospital most days i was never well enough to concentrate. I hated not being the best and not being able to attend school made me fall into the grips Anorexia. My world was so out of control, the one thing i thought i could control was food and what went in my body. My weight quickly dropped and it was picked up on one of my monthly appointments to the Brittle Asthma Clinic. My respiratory nurse at the time was concerned about how much i had lost since my last visit. After a few months it became clear that i couldn't hide the fact that I wasn't eating. My body was picking up infection after infection which was resulting in more frequent admissions to Intensive Care. It was decided that I had to be admitted to a adolescent psychiatric unit. I was 12 years old. The youngest on the unit full of teenagers with a mix of psychiatric conditions. I was placed under a six month section and had my first encounter with the dreaded Naso-gastric tube. The taste of plastic and the smell of osmolite became all to familiar. My time in the adolescent unit was coupled with emergency admissions to the local general hospital for my asthma. Sometimes i didn't know where i was waking up i was shipped about that much. I spent the majority of my teenage years in the unit or in the sick kids hospital. When i was 17 I was transferred to adult services. Gone was the fluffiness and protected little world of the kids hospital, thrown in to the deep end of the adult hospital. Admissions were a lot less pleasant and the reality of how serious my lung condition was hit home. Medication regimes became more and more, admissions to Intensive Care became more frequent and lengthier. Sub-cut bricanyl was added to my ever growing list of medication, and shortly after that oxygen at night. Ng feeding was now part of my everyday life to stay on top of my weight. I had several admissions to Eating Disorder Units but my Anorexia was diagnosed as 'chronic' and 'untreatable' and I'd be sent home to continue with feeding.
My Lung function has continued to deteriorate to where I'm at now, my LF is 25% I am on 24 hour oxygen along with s/c bricanyl 24/7 my medication list is forever growing to the point i take medication to counteract medication side effects! On a good day i can go out as long as i have my liquid o2, on my not so good days i sleep and sleep, hoping not to wake up in hospital.
I guess reading this back i can see my life is different from most peoples, but i have never known any different and i can either choose to keep fighting or wallow in self pity at the fact I'm not 'normal'. And the people who know me will know i ain't the type of person to think woe is me, yes its tough but I've come this far and I'm not a quitter! And i don't intend to start now!
So buckle up, and smile and join me in my journey!
Muchas Luv Gilly x ;) <3
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