PEG procedure

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.

Decline, and trying not to fall

We bought our current bed about six years ago. Rather earlier than expected it became quite soggy and uncomfortable. I had a thought… if we were to buy an electrically adjustable kingsize bed to replace it (one with two separate mattresses side by side) we could stay in our bedroom together for much longer. I did some online research and asked The Adjustable Bed Factory to give us a home demonstration and a quote. The sales person brought a small bed into the house, we both tried it and tested the electric controls. There was nothing not to like (apart from the price!) and, unusually for us, we placed an order straight away. Just four weeks to wait.

We also ordered an electrically operated garage door in March. My wheelchair route out of the house will be through the garage and I need to maintain some independence. MND is an incredibly expensive illness for people and I purposely haven’t done all the sums. Oh well, I guess we save money by missing out on holidays during the pandemic, and I was going to trade my car in this year for a new electric one. That plan is now definitely out of the window as I don’t think I’ll be able to drive for much longer.

My capabilities declined a lot during March. My left hand and arm became extremely weak and I could no longer write properly with my right hand, buttons became impossible and zips quite tricky. There was just no strength in my fingers. Another example of the problem is that it was now really difficult to lift a plate or bowl out of a cupboard at eye level. It was as if everything weighed ten times as much as normal.

I also began to find it incredibly difficult to sit up and get out of bed. The grab rail secured under the mattress had been great, but my arms had weakened a lot.

I suddenly found myself uncertain about coming down stairs (there are two flights from our bedroom). My legs were much more jerky and my brain seemed to be warning me that stairs were now dangerous. I was desperate to avoid tumbling down the stairs and so we resolved to get the stair lift installed soon. And, having invested in the new bed for our room, we would now need to get a second stair lift for the second flight of stairs. More expense, and the trouble is you don’t know how long any of these measures are going to work.