PEG tube Feed Duration Update

Continuing the discussion from PEG Tube feed duration:

Further to my original post from 29 April 2022, I would like to share an update on this.

The PEG site condition seems to have deteriorated and there seems to be a lack of expert knowledge or reluctance to do something about it, apart from the fall back default of a course of antibiotics.

In mid-June, roughly 6 weeks ago we managed to meet with a stroke specialist in our local hospital with a view to getting advice on how we can better manage this and other conditions to make Mum’s life more comfortable. We were quite excited and hopeful that the specialist stoke consultant would finally help us.

Sadly it was all a bit of a let-down as we came away with nothing new and no new hope. It was the same old, she (Mum) is 90+ and realistically she will not benefit from any further treatments or tests. So for example, they said the tests may prove to be invasive and/or uncomfortable. Further, any treatment may improve/extent life expectancy by months. All words designed to put you off from pursuing the case.

The PEG site was treated with a heavy dose of antibiotics which seemed to not help very much if at all and indeed led to (expected) side effects including diarrhoea and c-diff infection.

Mum ended up dehydrated and hospitalised. During her stay, the PEG site was again the subject of conversation and again we were told “let sleeping dogs lie”. So instead of replacing the tube which they say will be stressful for Mum and which might put her at risk.

The reluctance to change the PEG tube is incomprehensible to us, but as the words are coming out the mouths of experts we are unable to challenge them, because they keep saying age is not on Mum’s side.

Their solution:

Mum has now been put on a 16 hour duration PEG feed at a low rate (50ml / hour). She is on liquid feed and the required volume is 800ml, hence the 16 hour duration.

This is a significant change from her feed plan prior to the hospitalisation when she was effectively on 3 meals and a snack times i.e. she would have a breakfast, lunch, supper/dinner and a snack all lasting between 30 minutes and an hour. So “normal” lifestyle. She then had opportunity to do other things e.g. sit out in the chair etc.

Now she spends a lot of time in bed on her feed because to reduce risk of aspiration she must be lying at an angle of between 30 o and 45 o (degree angle).

These doctors/consultants have no idea of what this means to a person’s quality of life. The solution they have come up with is the easy option for them to free the hospital bed and not do an operation to replace the PEG that they believe will not be required for much longer as Mum is probably nearing her end of life (sorry to be blunt).

They trialled this for a few days in hospital, but without the realisation of the impact this change has on Mum and once the tests indicated Mum was medically fit, she was sent home.

Happily, Mum is a tough cookie (her original stroke consultant called her “Woman of Steel” as she kept surprising him with her will to life post the very severe stroke that he and his team had told her/us she has had – that was over 3 years ago) and she is still fighting on.

I hope there is something in this that may help someone out there - it is our mission to share our experiences, good bad or indifferent in the hope even one person may benefit in someway because we believe no one should have to go through what we have (and I suspect others out there have) had to go through.

Peace and Love to all. :pray: :hearts:

@ManjiB thank you for sharing and yes we will take something away from your mums journey. I wish her well she sounds as strong as an ox (in old terms)

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@ManjiB thank you for sharing your story. I am sure others will take something from your experiences. Sadly I think age really does make a difference when Dr’s are deciding on treatment & it does seem that they don’t bother with the older population. I guess they have to balance benefit vs risk but that’s not easy to accept when it’s your loved one they’re treating (or not).
Your mum does sound like a fighter though & hopefully she’ll be around for a long time yet.
Best wishes
Ann