Following a negative COVID test I was admitted to The National Hospital on Tuesday 23 March, and had my PEG fitted the following morning at the neighbouring UCLH (University College London Hospital). Knowing that something invasive was going to be done under sedation rather than a general anaesthetic, I was quite nervous as I have a very low tolerance of pain. However, I can honestly say that I don’t remember anything about the procedure at all. I do remember having to bite on a circular object to hold my mouth open, then the sedative being delivered via my cannula… and that’s about it until I came round some time afterwards.
Back on the ward I was given intravenous hydration, then I slept deeply and woke up mid afternoon to have my new feeding tube checked and flushed for the first time. Then, six hours after the procedure I was allowed to eat and have a drink (the first time for twenty-four hours). I didn’t eat much – probably psychological, but my stomach felt a bit bloated and I didn’t feel very hungry.
The next day Sue came to the hospital and was trained in how to clean the stoma site (for two weeks) and how to flush the tube, which will be a daily occurrence. Having been visited by my neurology consultant earlier in the day I was discharged and we were able to go home together by car.
Two weeks after the procedure we would be visited by a nurse from the Abbott Healthcare company and shown how to routinely rotate the tube to prevent ‘buried bumper syndrome’ (where the internal disc of the PEG tube becomes buried and the stomach lining grows around it.
The coordination between the National Hospital clinicians, dieticians, and my GP, local community nurse and dietician had been well organised. Communication channels could have been weakened during the pandemic, but there was no evidence of this and everything appeared to be pretty seamless.
Great work Peter and Sue. I’m sure this will be of huge value for many.
Btw Who do you want to play you in the movie of your diary?
Love Korky x
Thank you Peter for writing this. I am sure it will be a great help to those facing the same disease and issues.
But I don’t know how to put down in words how I feel after reading it.
Sad, amazed, proud, grateful, so may emotions but NOTHING compared to how you,Sue and the family feel everyday.
I am not surprised by your approach to your illness, meticulous, organised, well informed, as always. I always valued your advice and support during our ALGSS committee days.
I pray and hope that all the planning and alterations will help ease the difficulties of day to day life for the coming months.
I will raise a glass of non jellified red to you!
Sending love to you both xx
Wow Peter, that was a real eye opener (and tear jerker I’m afraid) . Thank you for being so candid, I hadn’t realised how quickly the disease has affected you.
Your matter of fact way of attacking the situations you have found yourselves in are remarkable snd a real lesson to others. I love the way you are both so organised and ‘on it’! Sending you huge amounts of love xxxx
Such a calm and reflective write up of your journey so far Peter and one that certainly answered many questions for me. Thank you for sharing. I will be continuing to think of you. Xxx