Rebecca's story
I was 15 just and about to take my first round of GCSE's when I started to feel unwell, lost appetite and was tired all the time. After a couple of visits to the GP's it was assumed it was just normal teenage anxiety with exam stress and no tests were carried out. I was sent home and pretty much told to stop being a drama queen and get back to school. I did for three days, where I was so tired I fell asleep in pretty much every lesson. My parents were starting to worry but being a very fit and healthy child it seemed like there couldn't be anything wrong.
It was only when my stomach started to become distended with fluid that the GP came to the home and sent me to hospital straight away. After a couple of hours in hospital and even though no one said a word I knew it was not good, the doctors and nurses tried to hide the shock when they were doing echos, ecg's and x-rays but you could sense the sadness in the room. Cardiomyopathy was the diagnosis, my heart was almost three times the size it should be and I had a matter of weeks to live. Treatment was started but it made little difference, I could feel the fluid rising up my chest daily stopping me breathing. As is my nature I was so positive it would be ok, maybe naïve reflecting back but I had so much to do I couldn't imagine not growing up. I was put on the heart transplant list and went top priority as I had no more time to wait.
After the worst and oddest 6 weeks of my life the day after my Dad's birthday the 3rd August 1996 I received a new heart. Amazingly I was off ventilation in a few hours and trying to breath for myself, then sitting up then wash myself and then leave hospital within the record time of a week. I felt different and definitely it took time for the new engine to bed in, its crazy listening to someone else heart beat inside your body. I wanted to get back to school and get back to being 15, which I did but I had changed forever.
I think we need to support people who have chronic diseases or life changing experiences to deal with it. I was often unwell due to the medication I take to suppress my immune system and I struggled at college. When I went away to university life was a struggle as I was not quite able to keep up. So I did not fulfil my potential and stuck to part time jobs and watched my peers become grown ups. Then again I started to feel unwell, I new it was going to be bad. I remember going for the renal ultrasound and watching the doctors face when he saw my kidneys on the screen. I was once again given bad news just before my 21st birthday that I would require a kidney transplant very soon and to start accepting I was going to need dialysis. Luckily my mum was a match and the operation was a successfully completed when I was 24.
When I went for my dialysis sessions which would last for 4 hours I just to plan my future and what I wanted to do once I had the kidney transplant. I was accompanied by my big sister who would sit with me every Saturday night. So I gave myself a few months to recover then I went back to university to finally get my degree. During the next few years I met my husband, bought a house and then we decided to have a baby. As you can imagine, two organ transplants made everyone very nervous. The best doctor I ever had told me I was normal and I should live my life to the fullest and that for me was having a child. I had some scary moments but we got there and I had a healthy baby in 2011.
I started my dream job as a nurse assistant that year and was due to do my nursing training the following year. Unfortunately I was experiencing muscle weakness and would struggle to get out of chairs or off the floor. When I visited a neurologist they suspected I had Muscular Dystrophy. There is no treatment or cure for this diagnosis and it took a while to get my head around and I felt lost as what I could do next. However, it just meant a new plan and a different direction which took me firmly into the world of disability, accessibility and inclusion. My walking is not great, slopes, stairs and low chairs are difficult and it has completely changed my outlook.
I have now made it my mission to support people like myself that have been left to navigate the complex world of accessing services and enjoy working tirelessly to support people who need help. I have worked in the third sector for many years and have a masters degree in Public Health. Now I am a disability consultant, coach, public speaker and advocate. People need support when given life changing diagnosis and disability consultant can support you to adapt and re-focus.
Get in touch via LinkedIn or Facebook @disability.consultant.uk
I was 15 just and about to take my first round of GCSE's when I started to feel unwell, lost appetite and was tired all the time. After a couple of visits to the GP's it was assumed it was just normal teenage anxiety with exam stress and no tests were carried out. I was sent home and pretty much told to stop being a drama queen and get back to school. I did for three days, where I was so tired I fell asleep in pretty much every lesson. My parents were starting to worry but being a very fit and healthy child it seemed like there couldn't be anything wrong.
It was only when my stomach started to become distended with fluid that the GP came to the home and sent me to hospital straight away. After a couple of hours in hospital and even though no one said a word I knew it was not good, the doctors and nurses tried to hide the shock when they were doing echos, ecg's and x-rays but you could sense the sadness in the room. Cardiomyopathy was the diagnosis, my heart was almost three times the size it should be and I had a matter of weeks to live. Treatment was started but it made little difference, I could feel the fluid rising up my chest daily stopping me breathing. As is my nature I was so positive it would be ok, maybe naïve reflecting back but I had so much to do I couldn't imagine not growing up. I was put on the heart transplant list and went top priority as I had no more time to wait.
After the worst and oddest 6 weeks of my life the day after my Dad's birthday the 3rd August 1996 I received a new heart. Amazingly I was off ventilation in a few hours and trying to breath for myself, then sitting up then wash myself and then leave hospital within the record time of a week. I felt different and definitely it took time for the new engine to bed in, its crazy listening to someone else heart beat inside your body. I wanted to get back to school and get back to being 15, which I did but I had changed forever.
I think we need to support people who have chronic diseases or life changing experiences to deal with it. I was often unwell due to the medication I take to suppress my immune system and I struggled at college. When I went away to university life was a struggle as I was not quite able to keep up. So I did not fulfil my potential and stuck to part time jobs and watched my peers become grown ups. Then again I started to feel unwell, I new it was going to be bad. I remember going for the renal ultrasound and watching the doctors face when he saw my kidneys on the screen. I was once again given bad news just before my 21st birthday that I would require a kidney transplant very soon and to start accepting I was going to need dialysis. Luckily my mum was a match and the operation was a successfully completed when I was 24.
When I went for my dialysis sessions which would last for 4 hours I just to plan my future and what I wanted to do once I had the kidney transplant. I was accompanied by my big sister who would sit with me every Saturday night. So I gave myself a few months to recover then I went back to university to finally get my degree. During the next few years I met my husband, bought a house and then we decided to have a baby. As you can imagine, two organ transplants made everyone very nervous. The best doctor I ever had told me I was normal and I should live my life to the fullest and that for me was having a child. I had some scary moments but we got there and I had a healthy baby in 2011.
I started my dream job as a nurse assistant that year and was due to do my nursing training the following year. Unfortunately I was experiencing muscle weakness and would struggle to get out of chairs or off the floor. When I visited a neurologist they suspected I had Muscular Dystrophy. There is no treatment or cure for this diagnosis and it took a while to get my head around and I felt lost as what I could do next. However, it just meant a new plan and a different direction which took me firmly into the world of disability, accessibility and inclusion. My walking is not great, slopes, stairs and low chairs are difficult and it has completely changed my outlook.
I have now made it my mission to support people like myself that have been left to navigate the complex world of accessing services and enjoy working tirelessly to support people who need help. I have worked in the third sector for many years and have a masters degree in Public Health. Now I am a disability consultant, coach, public speaker and advocate. People need support when given life changing diagnosis and disability consultant can support you to adapt and re-focus.
Get in touch via LinkedIn or Facebook @disability.consultant.uk