Lizzie's Hospital Experience

When the last edition of Wellspring came out, I was going through my own, different sort of transition. I now have to sleep wearing a mask and using a ventilator.

At the end of July, I started feeling very tired and short of breath and was finding it increasingly difficult to sit up in my chair. At first I thought it was due to me being exhausted after a busy year at University, but after a week of lying on my bed at home I was admitted to St. Richard's Hospital.

As soon as I arrived on my ward I was given an oxygen mask which helped me feel much better as it slowed my breathing down; I also felt much more alert. For the first few days I had blood taken from my wrist to measure my carbon dioxide levels. In the evening I had lots of little probes stuck onto my body which also helped to measure my CO2 levels. I had to keep these probes on for a few days, but they really annoyed me as every time I moved one of them came unstuck and the monitor I was connected to started bleeping! I was also attached to another monitor which was constantly measuring my pulse, oxygen levels and blood pressure. It was all a new experience for me and I found all the machines really interesting, having always watched Casualty and Holby City! I shared my ward with 6 other ladies, which was very entertaining!

Next, I was put onto a ventilator to help my breathing. My mask was changed to one covering my nose and mouth. It was much bigger than the first oxygen mask and was quite tight on my nose. I had to keep this mask on most of the time I was in hospital as it was giving me oxygen as well. My first night on this machine was quite difficult as I could not breathe in time with the air being pumped in. It was also very difficult for me to talk inside the mask and everybody found it hard to hear me which was frustrating especially when I had visitors. I was only allowed to take the mask off for mealtimes and to go to the loo the first few days, so as I started to feel better, it became more and more annoying when I had to put my mask back on. I had lots of visits from friends and family who helped to cheer me up and brought me lots of nice presents and cards. All the time I found the mask frustrating I had to remember that it was helping me to get better.

After spending 6 days in St. Richard's I was transferred to The Royal Brompton Hospital in London where they specialise in respiratory care. I was taken up there in an ambulance and I found this quite exciting especially as I was feeling better than I had been.

Later my sister Alex arrived – she was also going to be checked over (Alex had already had a ventilator for 7 years). We were both given new masks which were softer around the edge, so were more comfortable than before. We were both given new machines which we only had to use at night. After my first night I felt quite blasted and squashed in my face where my mask had been.

We stayed in the Brompton for 8 days and my oxygen was turned off towards the end of our stay and now I just have pressurised air. I really liked the feeling of waking up feeling fresh in the mornings and was pleased that my appetite was much bigger!

The last few days in London were so hot - we just sat in front of our fan all day long ! After three days at the Brompton, my brother visited and took me out for a walk. This was the first time I had been outside for two weeks! I couldn't believe how noisy the traffic was and how big everything seemed!

When we finally came home, the district nurses visited us to keep a check on our noses, which had sores from having the masks pressing on them every night. After a few weeks my nose was not recovering as well as they had hoped so we investigated other types of face mask, which might be kinder on our skin. We now have masks which go over our whole face like a fencing mask and our noses have recovered. In a few weeks time my parents are going on holiday on their own – something they have not been able to do before due to the complexity of fitting Alex's old mask.

My message to anybody facing having to use a night ventilator is that although it is a big change to bedtime and sleep you will get used to the mask and feel so much better. I feel I have been given an new lot of energy every day!

Lizzie Baily lizzie@wellspringwestsussex.org.uk