Getting Peg Tomorrow

Mum is still waiting for a Diagnosis, but with her failing ability to swallow, and after seeing her GP today she was asked to go straight to hospital with a view to having a peg inserted tomorrow. We dont really have any idea what to expect. Her only other symptoms presently apart from fatigue is her eye is closed when she wakes in the morning, and it takes some time for it to come right. Dr did some tests today and said it was all fine! hmmmm. So we sit and wait for what comes next..........tick tick tick.

Dear astro
thinking of you and mum in the hospital today. Hope all goes smoothly.

Wishing your mum all the best, a peg will really help her conserve energy and not lose weight. Once it becomes hard to swallow it is too easy to stop eating or reduce the amount eaten so good for her with the peg. Eat the good stuff and leave the boring nutritious stuff for the peg tube.

Went ok, but collapsed as she was about to leave. Immense pain. Despite trying to hide it. They think that maybe her pants were pressing on it. Hmm. Funny thing is I think she was going to leave and not be shown what to do with it. Stupid hospital. Last time she was there having vein surgery, they wrote her off as some nutter due to her poor speech, pulled the blinds and ignored her. She was so upset. I certainly made sure this time that wouldnt happen, especially now as she has no speech. Has been treated well, lovely private room etc. I do hope Barry that she can still manage some soft foods.(this has been done urgently as her swallowing deterioated in a few days) Could you tell me how long it was after you developed bulbar symptoms did you notice other symptoms in your limbs? I hope you dont mind me asking, this is such a waiting game and I always wonder what comes next. I understand everyone is different though. Take Care.

I don't mind and yes we are all different but my first bulbar symptoms were in July of 2007 and my EMG of my limbs in September of that year showed some problems with my limbs. I didn't notice any limb issues until the spring of 2009 and in fact I was hiking, ATV riding and horse riding in the mountains in the summer of 2008.

Sorry about your mom's peg experience, so very much depends on the hospital and staff. It is really hard to be your own advocate when you can't talk so I'm glad you are ther to stick up for her.

Barry

She was very pleased to get home despite being in a lot of pain. I guess this is normal to start with. She was given no instructions and we are unsure if and when it needs changing.....does it? She used it to have some water. I am worried she will become dehydrated, not managing to drink at all now. Thankyou Barry for your experience, I dont understand what an EMG is, we are in New Zealand. She has had a MRI on her brain which didnt show much at all. But a test on her limbs would be great. Having a lung function test soon which i suspect wont be good as she is very short of breath! She has trouble opening her left eye after sleeping, but her Dr tells her everything seems fine.......obviously it is not. Take Care

Mum is back in hospital. Wound started oozing and she was in a huge amount of pain. Very annoyed that hospital discharged her saturday, no information on use, no prescription for pain relief or for Ensure, very poor. However now in a hospital closer to home, on oxygen due to low oxygen stats, had morphine for pain, been fed for the first time in 3 days.

So sorry to read of your mum's journey. Hope this hospital nearer to home gets a handle on things and that she is in less pain soon. Thinking of you both.

Still in hospital, despite only being in the first hospital for less than 24 hours she has developed an infection in her peg wound.
She is being well cared for now, and is managing the pain better. hopefully home soon. thanks for your kind thoughts and wishes.

So very sorry to hear of your mom's difficulties. Hope she heals quickly and is back home very soon. She is most blessed to have you there with her. Very best of wishes.

That is very sweet of you CAHPAH. thanks. Its taken a few days to get the infection and pain under control, but thankfully was discharged today. Yah. Take Care.

Hope things go better now. Barry and JoelC are the go to guys about PEG. Tthere are others here as well.

AL.

Hi astro, I am glad that your mum is home again and feeling better. I really wish that all doctors who did peg placements were as good and as thorough as mine is. He would not let me leave the hospital until I was trained and equipped to use it.

I never did explain the EMG, it is a nerve test that is done to diagnose ALS and when done right can detect motor neuron problems often before any symptoms in the area tested. In my case the EMG detected limb nerve problems when my symptoms were confined to my speech.

Oh wow, that is great, thanks for explaining the test. I wonder if it is available here in New Zealand. I will be attending her next neurologist appt in Dec and will certainly bring this up. She has definate fatigue, shortness of breath ( the silly woman continues to be a heavy smoker, despite the fact she doesnt have much suck or puff!) the bulbar symptoms but limbs still seem ok. She is in need of bilateral hip replacements but I cant see Drs continuing on that path. I will do some more research on it so I can be fully informed. You guys have been such help, thank you so much. Its great to know there is somewhere and someone to turn to. Take care precious people!