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Tinamic
2nd September 2014, 00:41
My brother was diagnosed 12 months ago and has lost an enormous amount of weight. He is now under 8 stone, he is struggling to walk even with assistance but is very reluctant to use his wheelchair.
He reluctantly had his peg fitted last Wednesday and all seemed fine apart from some discomfort but last night he began bleeding and he has now had 2 blood transfusions and a CT scan.We are expecting results tomorrow.
He lives many miles from the rest of the family apart from his wife who cares for him and we were planning to visit next weekend but my sister and I are trying to sort out work etc to go on Wednesday instead.
I just wanted to know whether anyone has any experience of this?
I'm very concerned because I spoke with him on the phone last night before the bleeding started and he said he was feeling very weak, since then he's been rushed into hospital and had the scan & transfusions so I can't imagine how weak he is feeling now.
I hope it's ok for me to post even though I'm not a carer or anything , just a very worried sister.

pete
2nd September 2014, 08:10
Hi Tina,
A very worried sister qualifies ok, well not to seem to blunt, he needs to help himself and those around him, the peg issue is and can only be sorted by the surgeons , much is said about getting the peg fitted as if it's almost mandatory ,by those who advise us, however they don't ever say that any operation carries risks with surgery, we have many who have had it fitted without problems, but some have, I have no knowledge as I elected not to have one,, is he eating anything by mouth and how does he manage with fluids, I certainly hope he gets sorted soon as by the sound of things ,he really needs to regain his weight and strength as soon as possible.

Pete

Tinamic
2nd September 2014, 08:41
Thanks for your reply Pete, he has always been a picky eater but he does eat small amounts at each mealtime and has 2 fortisip daily but I think he has eaten barely anything in the last 24 hours or so. I presume that he will be on a drip whilst he's in hospital.
You are so right about him needing to help himself but to be honest I think he's in complete denial.We spent a week with him in Devon at the end of July and he told us that if anyone asked about him we should just say that he fell off his bike. I don't think he realises how physically fragile he looks.He used his wheelchair whilst we were away but will not use it in the village where he lives and has has an electric wheelchair delivered about 10 days ago which he will not try as yet.
I'm afraid his wife is less than compassionate in her manner towards him, I do appreciate what great strain she must be under but it seems to make the condition that much more unbearable when there's barely a kind word and we are so very far away, I send him hugs down the phone.Sorry to be so long-winded.Thanks in advance for reading.

pete
2nd September 2014, 10:16
Hi Tina ,
We are all the same ,reluctant to admit what is happening and worse we have to accept help, doing even simple tasks take on a whole new challenge when your hands legs and fingers don't do as you tell them, I think it's very much what works best ,being a bit short with us works well as most of us developed a poor me attitude ,then realise we can do things just takes a bit longer and working out new ways , don't be to hard on his wife ,trust me we can be just like two year olds tantrums,and mood swings ,unless you live with it 24/7 you tend to see what works best , just hope he gets the help he needs, and don't apologise for caring enough to post ,long or short it's worth reading.

Pete

Tinamic
2nd September 2014, 10:55
Thanks Pete, it's easy to judge from the outside, i know it must be difficult for them both. I'm working now but perhaps I can post later and explain my concerns in a little more detail.
It would be great to have someone else perception, maybe I'm being overprotective but I don't think it's just that.
Kind Regards
Tina

Tinamic
5th September 2014, 09:08
Hi Pete,
We went to visit my brother in the hospital on Wednesday, he is feeling sore and weak, he now weighs only 7st 4lbs. They haven't established the cause of the bleeding and were asking whether he had been messing about with it, he hasn't because he's really squeamish & a bit mard tbh. Yesterday his wife was asking the nurse to do the peg feed as it was half an hour late but they were busy, she told them she would do it as she had been shown last week and when she tried it began to bleed again, it seems that she is too rough with him or trying to rush things,
I'm very worried about him being discharged because at home he still has to struggle to get upstairs to bed, they are supposed to be making the downstairs dining room into a bedroom for them both and have a downstairs bathroom which has been made into a wet room. 7 weeks ago my brother,Ken said that work couldn't start on the new bedroom until it is cleared, it still isn't cleared because his wife has decided that they are going to decorate the whole house and it seems that room is going to be last, she has had the *******,hall and living room decorated and new carpets fitted and now the spare bedroom upstairs is being done, In the meantime when he is home he cannot manage to get upstairs alone, she has to go behind him, shoving him upstairs by his backside. I just don't understand her.
She said they've been told that the doors need widening (bathroom door already done) for the wheelchair and when I asked if that was for the electric wheelchair she said that they cannot have the electric wheelchair indoors as there is no ramp. A ramp won't fit at the from door because it would block the garage door. They have patio doors in what will be the new bedroom and I suggested a ramp for there and she said "no we can't do that as were having an extension built" I said I was surprised as they have plenty of room but she said she wants somewhere to put her washer and dryer so that she can put a dishwasher in the ******* but there are only the 2 of them and Ken barely eats very little anyway. We are starting to wonder whether she just wants to spend as much of their joint funds as she can and increase the value of the house as she is not a beneficiary in his will apart from the house. I'm still concerned about her manner towards him too, I know there must be frustrations but when I say barely a kind word there's no exageration, her words and her tone are not pleasant to hear and there's no niceness to outweigh it :-( I'm so very sad for him for that as well as the disease.
On a positive note it was wonderful to see his face light up when we arrived to see him on Wednesday and I'am looking forward to going again tomorrow, my sister & brother and I are going and will stay over so we can see him on Sunday too, just need to find a B&B now.
Thanks for reading and for your advice.
I hope your journey with MND is more bearable than Ken's, he seems to have a very aggressive form. How long is it since your diagnosis?

Terry
5th September 2014, 10:21
Hi Tina;

This disease puts strain on all but the best relationships. People do do strange things because of the extra responsibility and work load but you would think that she would would sort access and a down stairs bedroom first. I can understand your concerns but don't see any way around it other than moving in. You could maybe get an OT to give advice when Ken gets home.

Regards Terry

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