how far can you get along the evading a PEG

[Worsleybird]

Me again, same old subject, having evaded the PEG op in November I am now being told it will be scheduled for January, which I have kinda agreed to half heartedly. I dont have any swallowing issues but am just careful in eating and having a drink besides me just in case anything gets stuck. No issues swallowing pills (two at once) just thrust my head back and a big gulp of water and away they go. Many many years ago my mother in law had an awful experience in a geriatric ward (patients pulling equipment off themselves and shouting and wandering around the beds, she was absolutely exhausted when she came out and died shortly afterwards of lung cancer). Also too much experience of relatives in nursing homes as well and not in a positive way.

Now I am left with an image of Bedlam. I think if it was just a day or two after the PEG I could probably just about cope but the thought of struggling to speak, my snoring and possible breathing issues overnight is really putting me off. I dont want to upset other patients either by keeping them awake. Then you think if you went in would you ever get out - getting really hospital phobic thinking about it.

Has anyone got breathing difficulties and swallow difficulties and not had a PEG and what is involved please foodwise/medication wise? Do you think you made the right decision or do you regret it?

When you have a young family its so difficult to know what to do for the best ..

[LindaB]

Hi Worsleybird I use an NIV overnight & up to now decided it's not the right time for me to have a peg. Initially I was flat out no....however I now think I could change my mind. I've discussed with the palliative care nurse and we've agreed it's something to consider...in the future
I'm aware that breathing issues could make the procedure more than difficult.

I eat fairly normally....just carefully...and drink again cautiously. I've got supplement drinks for any days I feel I need to add calories.

I take Riluzole tablets (small) but would request meds in liquid form if necessary going forward.


I've changed my meal routine as find I'm better to eat my main meal at lunchtime....before the fatigue really hits. Then early evening I can have more of a snack. I 'graze' throughout the day....

The consultant talked about having a peg from the 1st consultation...however I declined to even discuss then as felt it overwhelming. 8 months later Im less anti....but hanging on for as long as I can. It's what's best for me but of course we're all very different.

Sounds like you're doing really well up to now🙏😉😘

[matthew55]

I've had a PEG for ages. It's saved me for visiting hospital and it's the only way I can take painkillers. I've never had an infection. It boils down to how long you want to live. For me it's my hands. 👐👇👏👆xx

[Lizzie]

Hello Worsleybird. I too have bulbar onset. I had the PEG fitted a year ago when I was still eating and drinking, but I was persuaded that it’s better to have it done before you really need it. I went along with it, and now am truly grateful that I did.
I can no longer eat or drink or swallow meds, so it has helped to make sure I’m getting the nutrition I need.
iI know it is a personal choice and that is important. All I can say is I’m glad I had the PEG, as it has improved my quality of life .
Love, Lizzie

[Ellie]

Me again 😉😏

I know I sound trite - it's easy to when I've the luxury of sitting here, feeding tube in situ, knowing I'd be long dead had I declined it - but, to me at least, it seems you're overthinking the whole thing - it's no Bedlam...

You can definitely avoid ever getting a feeding tube, no need to evade the procedure as it is entirely your choice as to whether or not you have the procedure.

From a purely clinical view, if a person decides to get a feeding tube, considerations as to the timing of the procedure include:
- type of MND and rate of progression
- swallow ability
- recurring chest infections
- respiratory function
- weight loss greater than 5%

I daresay Clinicians are trying to do best by their patients in suggesting it's time to get a tube, though undoubtedly they underestimate the psychological impact having such a tube may have.

Has anyone got breathing difficulties and swallow difficulties and not had a PEG and what is involved please foodwise/medication wise?

That can vary from person to person, depending on whether they use NIV, how bad their breathing is, their weight and overall health and resilience but they all have the same thing in common, which is access to palliative care, ensuring appropriate care including medication to suppress and alleviate hunger pangs and breathlessness. If a person can physically swallow but it cause them to cough a lot and for food to perhaps find its way into the lungs causing pneumonia, I have known several people to continue eating small amounts of food with an 'eyes wide open' attitude.

When you have a young family its so difficult to know what to do for the best ..

That is a factor, for sure, as is your Quality of Life, whatever you deem that to be.

My heart goes out to you - there is not right decision, no wrong decision, just the decision you make.

Love Ellie.

[Worsleybird]

Thanks guys, sensible thought out opinions as always. Will wait for that appointment next month and try and make the best decision for me. Difficult when you have family as you are thinking about them as well as yourself. Stay strong

[Lynne K]

I have an appointment with the breathing team lead doctor at Wythenshaw on 15th January to discuss me having a suprapubic catheter and a PEG. The PEG won’t be a problem, it’s the suprapubic catheter. Both of these were my decisions. I requested them xx

[Ellie]

Worsleybird IDK if you've seen this my Tube website - it's MND-specific and might help you in making a decision. xx

[Suefromwakey]

This comes up time and again, it leaves me wondering if Albert has made the right decision time and again,

Defo no PEG..........I see from a post above they can give something for the hunger pains which I did wonder about but how could that be managed without a PEG and no swallow?

Is it inevitable that he will lose his swallow which is currently ok and although his appetite has waned a bit its not much at all - is it possible he can get through this without Bulbar?

I keep polishing the ball (Mystic Meg eat yer heart out)

[Ellie]

I see from a post above they can give something for the hunger pains which I did wonder about but how could that be managed without a PEG and no swallow?

It depends on the timing Sue, but meds can be absorbed through the inner cheek or nasally, given as a skin patch or delivered by a syringe driver through a little plastic implant under the skin.

is it possible he can get through this without Bulbar?

Absolutely. I have known quite a few people still able to safely eat quite substantial meals right to the end. Loss of swallow is not inevitable. xx

[PeterPan]

December 2020 - I could eat most things carefully, but pretty easily, with a drink handy in case I needed help with swallowing. I could take 2 or 3 pills at a time with no problem.

A year on I have to be extremely picky about what I eat. I can never drink at the same time as eating because that’s guaranteed to make me choke. I now have to have all my pills crushed as they are impossible to swallow.

In March I had my PEG fitted while I could still breathe easily lying down. I snore but didn’t keep anyone awake in hospital during the two nights I was there. The other patients in the small bay were much more disruptive than me! I put my headphones on and listened to sweet music.

I’ve lost more than 10% of my weight now and I have to be so careful about food. I’ve just started supplementing meals with Ensure Compact feed via the PEG. All my medications go via the PEG.

I’m pleased I made my decision I did. I’m also pleased I made the decision when I did. BUT we all have to make our own minds up. The mytube website was helpful to me too. Worth looking at.

[John D]

Diagnosed with bulbar June 2019. Gastro team tried to persuade me to have a PEG from 1st meeting with them. Resisted until April this year because it represented for me another step down a road I didn’t want to travel.

I was very aware of the issues around best (or more accurately worst) time to think about having a feeding tube fitted. My breathing wasn’t a problem but swallowing was, particularly fluids which I was only managing to sip. I’m glad my SALT finally persuaded me because it enables me to take sufficient water on board to stay properly hydrated. I was in hospital for just 2 nights. I also take Nutricia’s supplements through the tube although I can still eat albeit slowly and messily.

[Deborah]

Hi, I'm sorry you have to make this difficult decision.

My mum had bulbar onset. She opted for a Peg. She had lost her voice by then but we found the hospital staff super accommodating. She was in for 2 nights. The first few days home were difficult for her, getting used to the tube. And for the first few months she only used it for fluids.

But then she started using it for meds and food too. It was a massive relief for her as swallowing had become a trial. And the time we spent with her giving her fluids etc. through the peg were really special. We timed it with our favourite tv programmes or radio shows.

She never got an infection. It was pretty easy to learn how to use the tube and even friends of my mum's would help. There is amazing support at the end of the phone too with the feeding team.

Just our experience of pegs...

Big hug to you, Deborah

[Worsleybird]

Thanks guys watched the video. Very much with you on this John ''Resisted until April this year because it represented for me another step down a road I didn’t want to travel'', thats definitely me trying to hang onto my independence as much as I can.

Could someone detail what their experience of being on the ward in Wythenshawe / Salford Royal was like please as I was told it would be an MND ward - Im a bit worried/frightened/vulnerable about patients getting out of beds and wandering around in the night etc. as I will struggle to speak? Would there be a nurses station on the ward and how many beds in the ward please? Is it a mixed sex ward?

Plus the mickey PEG seems much more discrete but when I asked about that I was fobbed off and told that wouldnt be classed as a priority as it was more cosmetic than necessary. Can you insist on a Mickey tube PEG rather than the longer tube one I wonder?

[Lynne K]

Worsleybird I’ll watch for your replies as I’m going to Wythenshaw too in the near future xx