Peg fitting

[Teddies]

Hi all has anyone had experience of fitting peg well before patient experiencing difficulties swallowing (coughing is an issue at times) it has been suggested that it is fitted whilst patient is healthy enough to have procedure. Do all psp sufferers end up being not able to swallow? I don’t understand why it should be fitted now ? Any help or advice appreciated x

[Old_Lumpy]

Has your speech and language therapists suggested thickening liquids? Peg feeds are a last resort in my ,very limited, experience.

[Teddies in reply to Old_Lumpy]

Not at that stage yet I’m afraid mum tolerating drinks and food doesn’t need thickened liquids at present I think it is too soon for peg

[Hidden]

Mom had PSP, while in the nursing home she was given classes on swallowing & breathing. She did not have a Peg so l don't know what to think about putting one in before it is needed. There is a lot of information about the procedure on this site... if l where you l would reseach the pros & cons before agreeing to a Peg. Sending hugs... Granni B

[Teddies in reply to Hidden]

Thank you I will xx

[Yanno]

Hello Teddies

Jackie, my wife had a PEG fitted some time ago and she is still eating, drinking and swallowing okay. She has MSA not PSP but there are huge similarities. Jax had lost weight and was not eating at all well and she decided to fit a PEG on a preventative basis i.e. before she needed it but just in case she did.

The risks appeared to be low and the upside considerable. After taking feed through the PEG for a few weeks, she regained her weight and her appetite and we have not looked back. Now we only use the PEG for water (Jax has never been one for drinking as much as she should) and some of her drugs.

Quite exceptionally Jax had an issue when the PEG split and without hesitation she chose to have it replaced.

We now see the PEG as another minor irritation that has to be built into our daily routines. I realise for everyone its a very personal decision but for Jackie and I we would not hesitate to have one fitted.

Take care, Ian

[Teddies in reply to Yanno]

Thanks Ian x

[NannaB]

Our local Hospice wanted my husband to be fitted with a PEG before I thought he needed it. He was eating mashed food but not puréed at the time. I said I wasn’t happy about it and asked the GP to get him an appointment to have a swallowing test. The speech therapist said what the Hospice did, that it was better to get it done while C was fit.

He had the swallowing test and the doctor who saw the results said he wouldn’t fit it then even if C wanted it as it wasn’t necessary. He said every procedure had a risk and although there are very little from PEG fitting, why take the risk if the procedure wasn’t necessary. It was exactly two years later that he finally had it fitted. He could still swallow soft food but could not take in enough nutrients to keep his skin and bowels healthy. The PEG improved both. The local hospice was wonderful with C going to the day centre every week but I did feel they thought the PEG would be easier for them at lunchtime as someone had to feed him. They also panicked if he started coughing whilst being fed. Once he had the PEG he could be fitted to a pump which did all the work. During those two years they mentioned the fitting many times, each time saying he may miss the “window” and it would be too late. C knew when it was time and agreed when we were told the reason for the pressure sore not improving, lack of nutrients, by the district nurse who came to dress/treat it for 6 weeks with no improvement.

I made a lot of gut feelings decisions during the 6 years I nursed C, not all of them like by the professionals.

Best wishes

XxxX

[Teddies in reply to NannaB]

Thank you NannaB that is very helpful xx

[PSomani]

Hi. Typically once the diet comes down on account of difficulties in swallowing and coughing - there may be a tendency to start having muscle attrition . In some cases it may impact the leg muscles resulting in a inability to walk. Hence , if a requirement is likely later and you are pro-putting it , it may be worth to evaluate putting it early to prevent muscle loss. Muscle loss now cannot be recovered later by pure peg feeds.

We faced this with my mother hence sharing.

Needless to say there are lots of issues in peg maintenance . That’s something the care givers at home or elsewhere need to be prepared for. End of the day, it’s an open wound . Likely to get infected as well hence cleanliness is v important.

Hope this helps.

Anshuman

[Teddies in reply to PSomani]

Thank you so much for sharing this with me. X

[AJK2001]

Hi

Mum has been asked virtually from time of diagnosis what her view on a PEG is. In her case she's a no, but she is still asked regularly by SALT, Dietician, Neurologist in case she has changed her mind. We were told last summer when she first started losing weight that if she was to have a PEG fitted, it would be better to do it whilst she was still "well" rather than leaving it to an emergency intervention as it would have greater chance of success, Mum would recover quicker etc etc. Mum once again reiterated she didn't want that level of interference and the Nurse Practitioner agreed with us saying that the there was no evidence to suggest having a PEG increased life expectancy and there was a risk of complications. In Mum's case she has had a heart attack so a general anaesthetic probably poses a greater risk to her than most people.

It's a very personal situation and you have to look at the person as a whole. Mum is rapidly approaching her 87th birthday, has poor quality of life, so why would you put yourself through a procedure that isn't going to change the outcome of PSP. If she was 20 years younger, I think she would have a very different view.

So the take away is, if you are going to have a PEG the outcome tends to be better if you are "well" before you have it done. The decision whether a PEG is appropriate for you or your loved one needs to look at the wider picture. I must say I was very lucky in that Mum has been so definite about this, that it has made it easier for me, in that it is not my decision, she has made it, it has been documented and I just need to make sure her wishes are respected.

[Teddies in reply to AJK2001]

Thank you for responding this makes it easier for me to understand x

[Javan]

If the old bag had a peg earlier, she would have not have had uti and weight loss due to dehydration. We felt that early fitting would have been better and have cut out hospital stays.

[Teddies in reply to Javan]

Thank you x

[Fiona_McL]

My mum had a PEG fitted before her swallow went completely. It happened when already living in a nursing home because of her care needs, but was reasonably ‘well’. It made a huge difference to her straight away, to my surprise. I hadn’t realised how dehydrated she’s become. She was still able to eat soft food, but the PEG took away a huge amount of stress.

My mum was 66 when the PEG was fitted, and she made the decision based on advice from her neurologist. (SALT, family and carers were all for it, but it took the neurologist to convince her.)

The health of people with PSP can deteriorate quickly and unexpectedly. That’s why the medics want to do the surgery when folk are fit to cope with it. The decision is be for each patient/ family to take depending on their own situation.

Good luck x

[Teddies in reply to Fiona_McL]

Thank you so much this is very helpful xx

[doglington]

Chris and I discussed the pros and cons of having a peg early on. He was sure he didn't want one. Quality of life was what mattered. He was 80 at diagnosis and I agree that if he'd been younger the decision may have been different. In fact the decision came when he couldn't see much, hear little, speak at all , even turn over in bed. Eating was his last loss and he didn't change his mind. In fact he refused to have anything as he was ready to die - and he did.

It's surely a balance between gains and losses and the answer depends on the individual.

It's an emotive issue. I hope you are able to discuss this with your mum.

Love Jean xx

[Teddies in reply to doglington]

Thank you Jean sending my love to you xx

[Robbo1]

My husband was fitted with a peg due to coughing and choking. I think it extended his life by about 6-7 months. Eventually, he still choked with the peg feeding This is when they ceased peg feeds to avoid the liquid from going into his lungs. A few days later, he died, very peacefully, with myself and our children at his bedside.

It’s a hard decision to make, but I’m my opinion, the stronger the person, the quicker they recover from the operation. The peg also avoids early loss of life through choking. My very best wishes to you both. R.

[Teddies]

Thank you for your response I hate this PSP x