My Story

I was born a happy healthy baby. When i was a couple of months old i was out with my mum and suddenly started wheezing and struggling to breathe. I went blue. My parents took me to A&E and i was treated for asthma. I continued to go in and out of hospital and had a nebuliser at home. I had broken my first bone by the time i was one, this was put down to me being 'accident prone' and i broke my arm again a year later and my femour bone wen i was 7 and spent 6 weeks in hospital.
Everything was going well and my breathing issues had settled down and i had a relativly 'Normal' life until i was about 12. I was always falling over and hurting myself and feeling sick and tired most of the time and had muscle craps and weakness but because that's how i'd always felt it was normal for me.  When i was 12 my breathing started being an issue again, trips into hospital became more and more frequent and serious. When i was 14, i got too sick to stay at my local hospital and was taken to the Royal Brompton hospital in London where i had many tests and lots of treatment. It was found i had a Primary Immune Defiency and Bronchiectasis. I started regular antibiotic's and IV IGG replacement threapy every 3 weeks. I was still getting sicker and sicker and my lung function was getting lower and lower. The Hospital just didnt know why i was getting so ill and we had no clues what to do.
When i was 16 i became critically ill, i was having my IV antibotics at my local hospital but i was not getting better, i was needing more and more oxygen and i got taken to my London hospital. I spent a total of 4 months there before returning to my local hospital. They didnt know what was going on with me either and i was going to be sent home with oxygen to keep me comfortable and just see what happened. But i contiued to get more ill and i was told i had to have an operation; me and my family were told the operation was very risky and i had a high risk of not waking up. But the alternative was not doing the operation and me dying for certian. So we did the operation. They found i had Pulmonary Hypertension and lots of tiny old and new blood clots surrounding my lungs stopping oxygen absorbtion and my lungs expanding. I was started on treatment and i started to stabilize. By now i had spent about 5 months in hospital and my muscle weakness had gotten alot worse i could only walk with a frame and had to use a wheechair to get around.
I saw a neurologist who did a muscle biopsy and it showed abnormalities, i was given a NIV (non invasive ventilator) to help my breathing at night as my lung function was around 30% at this point.
My muscles continued to get worse, i was able to walk short distances after a lot of rehab but my weakness just got worse over time. I am now eletirc wheelchair bound, use hoists to get in and out of bed and I cant stand up or touch the top of my head!! It is scary waking up and finding you cant do something as easily as you could the day before. At the moment im waiting for my appointment to see a top neurologist who can hopefully give me a diagnosis. I have been told what it could be, but im just going to live my life to the full!!!

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