Kevin

When I first moved into my flat I was very shy and would often keep myself to myself in my room. I quickly picked up the skills I needed to live independently with support from ubu. I learnt how to clean and budget and to cook my favourite meals. I joined local groups and soon had a very busy social life. My confidence grew, I was no longer the shy young man that everyone thought I was.

At the beginning of last year I decided I wanted to gain further independence and move to a smaller shared house. My plans came to a halt when I became critically ill by a virus that attacks the heart. My family, friends and the ubu enablers were all called to the hospital to say their goodbyes.

It was decided to transfer me to the Freeman Hospital in Newcastle as my only hope would be a heart transplant. However due to the damage caused by the virus, if I had undergone any surgery I would not come out of it alive.

Therefore the only alternative was a ‘LVAD’ device, a mechanical pump which would take over the work of the left side of my heart. I needed to have one until a heart became available or my heart repaired itself.

Freeman Hospital had never performed this operation on a person with Downs Syndrome before and were apprehensive about the prospect of carrying out the procedure. My friends and family said they would do whatever was required afterward in regard to my recovery and support.

I received the lifesaving LVAD device but had to remain in hospital until I recovered. I often received visits from my ubu enablers who brought me news about ‘Boro’ football team and stories about home.

When I was fit and ready to be discharged I wanted to be at my parents’ home but still have the support from the ubu enablers. They had to learn all about the Heartaware LVAD so that if an emergency arose we would know what to do. We all grew in confidence together and I even started changing the batteries and taking the INR readings which measure how long it takes for my blood to clot properly.

When I was stronger I asked to go and visit my old house. I realised how much I missed everyone and to have my old life back. I wanted to go back home. Meetings where arranged for my family, care manager and The Freeman Hospital for this decision to be discussed. I knew this was the right move and so did everyone else.

I am gradually getting back to doing all the things I did before. I am back home and I cannot wait to see what the future has in store.