Hello everyone,
I know you talked before about the PEG but I need to know how was/is your experience with the PEG? My father's doctor is saying that the PEG has a lot of disadvantage that the area around it might be infected if not cleaned properly also it might cause stomach issues etc..
My father is at the stage where he is chocking a lot and an MRI just showed that the swallowing part of the brain is damaged.
Thanks a lot.
My husband has had a PEG tube for 10 months. It has been great . We keep it clean. The only thing that I am having trouble with is recently it has started growing mold. This seems to be able to be cleaned with soda soaking in the tube. My husband has not been sick from this tube and infact has survived due to it's ability to feed him...he would have no other way to take in nutrient.
Good luck when considering this method of nutrient intake.
AVB
Hi Julia. My hubby hasn't got one yet and is still undecided if he will have it but my understanding is that there can be infections and other problems but I suppose if your dad is able to make an informed decision then he may wish to give it a go so collect all the information, medical and anecdotal, that you can find and that should help both of you. Good luck. Marie
Invaluable in my husbands case.Had one fitted in August and its been a god send.He couldnt even keep thickened drinks down without choking and meal times were slow and v stressful before.Now he is hydrated.Its not difficult either.It doesnt prevent the risk of aspirating on excess saliva and my 59 yr old hubby coughs at night.But hey ho you cant win some.Good luck xx
Hi my wife has had a PEG for over 18 months. Our experience has been good it provided 12 months of extra quality of life made day trips easy and going to concerts again worthwhile.
M is weight stable and it is easy to keep her fed and hydrated. We use bolus feeding 4 or 5 direct feeds a day I find it keeps us connected even in the nursing home. The alternative is pump feeding continuously over 12 hours which is easier but less personal. Keeping the wound area clean is essential but easy in 19 months no major problems but may be bolus feeding means the site is inspected and cleaned more regularly.
There have been issues with accidental tube extraction but M has only done it twice fiddling with the tube, the other times have been carer mistakes forgetting to check tube position before removing trousers it means a trip to hospital for reinserting but after 2nd trip to A&E at night we now wait for first thing in morning trip to day surgery ward and catch nutrition nurses before they start the day.
The first year was great and we would not have had the great time and experiences (grandchildren) but we are now reaching a point where her quality of life is reducing with more sleeping and no communication and chest infections becoming more aggressive. Day trips still ok but I do not think she gets the full lift she used to. I worry more about am I keeping her alive by force feeding when she is tired of life but then you see her fight infection or smile and the decision is still worthwhile for us.
Remember the decision to have a PEG (or RIG) is the patient get the information listen to professionals. In our experience I would say go for it.
Best wishes Tim
We are going through the same stage of thinking about a PEG. G has said in the past that she doesn't want one, having talked to our wonderful GP, who said she wouldn't have one. Other people have since said that G should consider it which is confusing. G asks me what I think, I say it is her decision. I worry that it will prolong life, that's not great, but I would hate for her to starve to death.
Sometimes this pig of a disease is just too much.
Gadgetgeek
We are in the same position. I know we are very close to having to make that decision. I spoke to my husband about it and he looked terrified and said no. However like you I don't want him to starve to death either. I did explain that would happen without a PEG. He still said no. I really don't know what we should do and in our case there is nobody to talk to. The Secretary to the Neurologist refused to allowe me to talk to him twice in the past 3 weeks. He is not due to see him until December!. Does anyone know who can talk to us about this? I have the name and email of a PSP nurse but was told not to contact her until we had a diagnosis by the PSP Association so I am in a real dilemma as to what to do.
Incidentally our Parkinson's nurse has only seen my husband twice since the beginning of the year! I did have a phone call from a Parkinson's nurse through the National helpline and she was very nice and advised my husband has at best a few months but that he could die tomorrow if he caught another chest infection. She also advised me to talk to the local Hospice as my husband used to attend the day care there. I had been thinking that I would do that in the hope we could get some palliative care. He is currently in a Care Home and I spend every waking and some sleeping hours worrying about him. Despite having 2 terminal diseases and other complications too I will be very surprised if we get CHC. Everything was marked down. I didn't want to hear the truth if I am honest but now I realise this is beyond unfair! I feel so alone with all of this.
Marie_14
Sorry Marie, I have forgotten where you are in the world, but I am presuming UK. Get in contact with the Speech therapist, they should then refer you to a dietitian, who will help make the decision. We have only got to that stage at present, so I don't know what happens next.
Lots of love
Heady
Heady
I am in Cheshire. I will contact the SALT person. See if she refers us to a Dietician. When you say she will make the decision do you mean about food being pureed or about the PEG? Sorry for being so dense but nobody has told me anything apart from the nurses at the National Helpline. Trouble is if you don't know the questions to ask you are lost.
Marie _14
Know that feeling!!! The SALT team are the best NHS support we get. Sorry, I'll rephrase that, the only support we get. Hopefully, they will advise you.
Lots of love
Heady
Hi Marie-14
We live in North Wales but have family in Cheshire Marple, Northwich and Warrington, If you are close to Northwich maybe we could meet up in Lostock Gralam new pub Watermead (Chain so very wheelchair friendly) if you want to discuss PEG with me and my wife on our trips to see grandchildren.
Tim
Tim
That's very kind of you. I actually live in Chester! Don't drive! Now why did I think the bus service would always be great and my husband could drive so I didn't need to? Biggest mistake of my life and there have been many! It would be great to meet if you can think of anywhere wheelchair friendly with bus or train for me to get there!
I could do with talking this through with someone that's for sure as I am struggling with the idea for and against. Don't want my husband to starve to death though. I think it's beyond awful that people have to think of doing that.
Marie_14
Chester is easy as takes 45 min from home by car or train could meet up at any venue in Chester which is wheelchair friendly. Another idea, There is a PSP group meets at the Liner hotel in Liverpool back of Lime Street station easy access contact juliabonner29@gmail.com for meeting details.
Best wishes Tim
Of course there are lots of disadvantages, but the main advantage is, it keeps you alive, the problem is, when does that turn into a disadvantage. At the moment my husband is refusing, but he can still just about cope with pureed food. What happens when that changes, I don't know.
Lots of love
Heady
At present this isn't an issue for us. However, Chris enjoys his food and I'm not sure if he would have a good-enough quality of life with a PEG.
He was quite adamant about this. I agreed. But I know that others on this site have found it good.
Unless the patient has an infection I think they are allowed to starve to death. I feel very strongly that this is wrong.
love, Jean
Jean
PEG does not stop patient eating it just ensures your guy gets his full nutrition and liquids without fuss. M used to enjoy chocolate and ice cream as supplements until she lost all swallow function still give her tastes of things from a minute dab on my finger or plastic teaspoon if she is in biting mode. The smiles are brilliant.
Tim
Its difficult to ask this, Tim, but do you feel she has a good-enough quality of life ? I don't personally believe in life at any cost and this disease tests me. - and all of us !!
love, Jean x
Hi Jean M has had the RIG (type of PEG) in March 2015 after losing 25% of her weight in a month. The PEG meant that she regained weight and could go out again within a month of the op. Her quality of life was much improved for about a year during which we were able to go out on day trips and overnights with our children it meant she was able to play with her first grandchild.
The problem is PSP progresses and in the last 6 months her quality of life has deteriorated as she can no longer mobilise or communicate but the PEG does mean that feeding and hydration are one problem we no longer have. I am still able to take her out in the car to Bodnant Gardens and Conwy RSPB reserve and feed her in the chair or restaurant but other than fresh air and different surroundings I do not know if she fully appreciates the trips but she smiles in response to any question about a trip.
Without the PEG M would not have been able cuddle her grandchildren so for us it provided many great memories we would not have had if she had not had the PEG. I am now wondering if it has not reached the time to stop the support if she suffers a bad chest infection but while she is smiling and not suffering chest infections the PEG stays.
In my opinion if the patient is fighting PSP (not the carers) and has no other bad issues then they should consider having the op.
Not an easy decision good luck and best wishes for whatever you both do. Tim
Thank you for your openness. Chris is no-where near this decision, and may never. But he did an Advance Care Plan over a year ago. It seemed a clear decision then.
As he deteriorates I think about it a lot. He actually seems fine but when he was in the hospice for a weeks' respite he said his quality of life was 3. He never complains.
As things progress all these decisions become less clear.
Listening to you I think all those memories are well worth it as long as she isn't suffering. Memories are everything, aren't they ?
If only life was as straight forward as I used to see it !!!
I hope M continues to enjoy moments and makes memories for you all with the grand children. Linking up with the future.
love, Jean x
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