"I am lucky to be here"

Due to my medical conditions, I have been in and out of the hospital several times over the past few months. I have neurofibromatosis so I am used to feeling unwell and having various infections. Last week I was feeling unwell at home, so I contacted my GP. They listened to me and then sent me straight to the direct assessment unit in Daisy Hill. I was then diagnosed with a kidney infection – I thought it was only going to be a couple of days until I got home, but I was very wrong. The kidney infection quickly gave me sepsis and the infection spread to my lungs. I wanted to self-discharge and go home as I did not realise how sick I actually was. The nurses had been trying to get me to go up to the high dependency unit from the night before, but I refused, believing that there was someone sicker than me needing the bed. One of the physiotherapists came to me the morning before I was brought to HDU and convinced me to stay. I still believed I was not sick enough to be in HDU, but I complied with the nurses, just to stop them nagging.

I don’t remember much from my time in the HDU due to my brain being starved of oxygen, that’s what the doctors told me anyway. One thing I do recall is the hospital priest coming into the ward and either anointing me or giving me the last rites, I cannot remember which to be specifically, but this really scared me. I finally realised how sick I was in that minute.

Since I was brought into the hospital, I have been informed that I now need a lung transplant, this is quite worrying for me as I was once told that a lung transplant is the last resort for individuals with my condition. The nurses and transplant co-ordinators are currently organising the paperwork currently. My children know that I am sick, but not to the extent that I actually am as I do not want to worry them, but I know that I will have to eventually when it comes time for me to get the transplant as I will have to travel to Newcastle- Upon-Tyne in order to receive due to the need for extremely specialised doctors. The doctors and nurses have been fantastic, but the physiotherapist, Laura, probably saved my life. She noticed that I had become extremely pale in the moments before my transition to HDU, she was the one who finally convinced me to go up to HDU. I stood up and collapsed after speaking to her and then I was brought upstairs.

The only issues I have had since arriving, has been the lack of entertainment in the hospital. I would appreciate having magazines accessible on the wards, or even having headphones in order to listen to the radio, from what I recall the Royal Victoria Hospital had a hospital radio and patients could phone in with song requests. I think this would be amazing as it is so frustrating having one tv on the ward.

I also think it would be very beneficial for elderly patients, confused patients or patients with mobility problems to have access to the shop via a shop trolley, I also think this would allow for the nurses to have some more free time or time to spend with patients. There wouldn’t need to be much perhaps some sweets, drinks and maybe some newspapers or puzzle books, along with some toiletries. The trolley also wouldn’t need to come every day but maybe every other day or three times a week.

Aside from these small things, I have been more than happy and satisfied with the care I have received, and I am so grateful to all of the staff here