Patient Story – Sheila

I am 81 years old, a widow and live with my son in the beautiful Northumbrian countryside.

A few years ago, I began experiencing bouts of ‘zonking out’, sleeping on an evening after dinner. This became progressively worse, and I contacted the GP who said that it was understandable because I was ‘no spring chicken’.

During the next 18 months, my situation worsened and I began falling asleep during meals and conversations, as well as falling out of my chair. On one occasion, my ribs pierced my lungs and I chipped my pelvis.

The resulting inactive recuperation period caused the long-term problem of weeping leg oedema. In addition, I experienced blindness, a change in my speech, an uncontrollable cough, and I felt as if I was drowning when lying in bed, so I had to sleep upright in a chair.

The GP thought that it could be B12 deficiency, and I was given a B12 injection. When I suggested it could be sleep apnoea, he categorically ruled it out.

By now I was ‘zonking out’ for about 20 hours a day and I could not concentrate enough to read or write, and I had violent nightmares and hallucinations. Normal life was non-existent.

My son, who was amazing throughout with his constant support, was seeing me quickly deteriorate -we were distraught and scared- there was just no help available. In desperation, he contacted the GP again and requested a sleep apnoea test which tested positive.

However, there was a shortage of ventilation machines, and for weeks I continued to deteriorate.

These delays resulted in me being rushed to Cramlington hospital in a coma. Apparently, over the months I had slowly been accumulating CO2 in my lungs and my son was told that I had only 24 hours to live, and ‘I was too far gone’ to be resuscitated.

It was at this stage, I was entrusted into the care of ‘The Angels’ – a group of young people who are committed to doing everything that is in their power to restore their patients to good health. Their professional dedication and work ethic is astounding and exemplary – over and above the call of duty. Since my continued illness meant that I had been unable to receive a Covid vaccination, they vigilantly attended to me, wearing their masks throughout.

At first, I was resistant to the ventilation mask, which was necessary for my recovery. Then I realised that I had to slow down my normal speed of breathing to suit the machine. I began to synchronise my breathing with the machine, and it soon became a natural way to breathe. Slowly all of my adverse symptoms reverted back to normal and I felt in control again. This small machine has completely revolutionised my life. Sometimes I awaken in the morning and don’t realise I am wearing the mask.

To prepare me for coming back home Alison from the Home Ventilation Team arrived in my room. She emanated, professionalism, poise, and positivity. I was meticulously instructed how to use the ventilation machine at home, and it is so easy. Although she advised me to be circumspect, she did not restrict my view of the future in anyway. She encouraged me to live my life. Apart from her obvious expertise, her major quality is that she instils confidence. Nothing is out of reach, and this is a terrific boost to morale.

Also, the after-care treatment she and her department has given me has been amazing. There has been absolutely no problem using the machine at home. I sleep well and awake refreshed every morning. Also on the last test, my CO2 level was within the normal parameters.

This beautiful life we are given by God, sometimes throws up desperate situations, but in these desperate times, you meet the most extraordinarily wonderful people. I was privileged to meet them.

• Kit a young boy from Hong Kong, who solicitously attended to all my needs.
• Dr Wey Lung who called in each day, just to say a cheery hello.
• Anthony who carefully monitor my progress by skilfully balancing the data to get the best results from the ventilation machine.
• Laura who came after her shift, from wherever she was working, to put me to bed.
• My consultant doctor who spent time in his busy day to come and discuss my progress in detail with me and my son.
• Aeron who regularly checked on me and charged my phone each night.
• Luke who calmed and reassured me when I was disorientated at the beginning of my stay.
• The Polish cleaning lady who thoroughly cleaned every part of my room and was so pleasant.
• Sister Long Lashes (my pet name for her) who helped to make me comfortable at all times.
• Alison, my mentor, and her assistant.
• And of course, my son, who tirelessly fought for me, and never abandoned me.

Thank you all