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Trevorhb
19th November 2014, 10:39
When I had an early meeting with my speech therapist after diagnoses in March, she told me about PEGS, speech devices and help from the hospice. I came out feeling shocked, thought why have they told me these things so early, looking back I was in denial.
Now 8 months later, I cannot communicate without my iPad, I am having a PEG next Monday, my hands are weak, hospice visit tomorrow and I cannot walk far.
Reality! :(

willsandco
19th November 2014, 12:19
Its the same with me, Trevor! The fact is that it creeps up on you, slowly and imperceptibly, doesn't it? Nothing can stay its progress so we just have to adjust and adjust some more. Sadly, there is nothing to be done, no magic wand to wave. We just have to stay strong for each other, I reckon. x

Terry
19th November 2014, 14:18
As I said Trevor;

Things are a bit easier for me as I have had longer to adapt. This has aloud me to get things before I've needed them.

Reality is not always nice so who can blame people for being in denial. I don't think that you were long in denial because you came onto the forum and went to branch meetings quite soon after your diagnoses.

Regards Terry

Steve
19th November 2014, 14:37
Things seemed to move quickly for me in the first 12 months but after the chair, PEG, comms hardware etc. things have stabilised. I hope you have the same outcome.

Jock
19th November 2014, 14:45
I'm luckier in some regards. I saw my speech therapist for first time yesterday. I mentioned PEGs and Lightwriters and Ipads and she said they a bit down the road yet, With the unknowing nature of MND I'm not inclined to get over-confident.

My thoughts are with Bulbar guys. Keep the spirits up and keep busy. All the best.

Trevorhb
19th November 2014, 20:03
Had a bit of a low day today, but I will bounce back.:)

Trevorhb
21st November 2014, 10:47
We finished our 4 week course at St Nicholas Hospice in Bury St Edmunds yesterday. I have been invited back in the New Year for a further 6 weeks which will concentrate of symptom control and to give Annette a break.
On Monday I go into hospital to have a PEG fitted. I stay one night just as a precaution and then come home.

Terry
21st November 2014, 10:51
All the best Trevor, Love Terry

Trevorhb
21st November 2014, 13:22
Thanks Terry. Just had a guy here to fit a stair rail after our NHS OT assessment. Lovely job, great service.

marieline
22nd November 2014, 02:56
Hi Trevor, reality sure sucks big time, but you gotta do what you have to do. Just don't let the down time erode your spirit though. Like Terry said, you learn to adjust the longer you hang out with this disease. The body even learn to compensate faster than in the beginning, or perhaps we just get used to it, to the point where it does not terrify as much. All the best with your peg procedure. The hospice is a nice place to hang out, cups of teas, crafts and relaxation.
best wishes
Marieline

Trevorhb
23rd November 2014, 10:37
PEG tomorrow, go in at 1 pm, overnight stay to make sure things are okay, then hopefully home. Apprehensive, but will be glad to get it over with.

Springtime
23rd November 2014, 10:43
Hi Trevor, hope all goes well for you will be thinking of you both. Hugs spring x

Alig2014
23rd November 2014, 10:54
Good luck for tomorrow.

Alison c

KarenaB
23rd November 2014, 12:55
I was apprehensive too Trevor but nearly 4 weeks on I've no regrets and feel healthier and much better hydrated on 100% PEG feed now. Hope it goes well for you and keep your spirits up.

Karen xx

Nettie B
23rd November 2014, 13:34
Did any of you have your partner staying with you overnight? The last Iheard was that there wouldn't be facilities for me to do that despite Trevor's speech now being very poor.

KarenaB
23rd November 2014, 13:41
No Nettie, I was on my own but although my husband was joking about me being given a double bed prior to admission I felt ok in my self and we didn't seriously pursue him staying.

Karen xx

Davec
23rd November 2014, 14:33
All the best for tomorrow
Dave and Sharyn

willsandco
23rd November 2014, 15:12
Yes, Trevor, we are all rooting for you. Hugs Joycie xx

Barry52
23rd November 2014, 15:35
Best wishes for tomorrow Trevor and a speedy recovery. Annette will soon learn the skills required to manage your peg but make sure you get professional support in the first instance. From what I have read before on this forum some people are left to their own devises.
Barry

Trevorhb
23rd November 2014, 16:05
Thanks everybody. I am sure our support will be good, we already have a document with all the local contacts in, the feed people, even instructions to take to A & E if I ever have a problem.

Nettie B
23rd November 2014, 16:15
As expected good old Trevor HAS bounced back. Had a good giggle very mushroom soup today! Can't for the life of me remember why but it was so good to see his winning smile again!

KarenaB
23rd November 2014, 16:22
That's great to hear Nettie xx

willsandco
23rd November 2014, 16:45
You have both gone through weeks of apprehension, Nettie, waiting for this procedure. Once it is done, it is done and you wont have it to worry about. We will all be awaiting progress reports! Hugs Joycie xx

Tangie
23rd November 2014, 22:48
Did any of you have your partner staying with you overnight? The last Iheard was that there wouldn't be facilities for me to do that despite Trevor's speech now being very poor.

Hi Nettie/Trevor

Sorry to hear how things are progressing. The PEG as unpleasant as it is can take a little of the stress away should eating become more of a burden. It gave me a little peace of mind when mum had hers fitted and was easy to use. I just wanted to let you know my dad stayed with my mum whenever she was in hospital. There where no facilities but given the circumstances they were accomodating and let dad stay in a chair next to her. They often arranged a private room as one of us would stay by mums side. Sending you best wishes and hope you are in and out of hospital quickly xx

Lycanthrope
23rd November 2014, 23:17
Hi Trevor x hope the op goes well tomorrow. Best wishes. Becky x

marieline
24th November 2014, 00:33
Best wishes with your procedure today Trevor, and Nettie.
xo Marieline

BlueEyesOhio
24th November 2014, 02:28
Trevor and Nettie,
Best to you both. Please pop back and let us know how Trevor is getting on Nettie. I'm sure everything will go well and Trevor will be back home safe and sound.


((((((((((((((((hugs))))))))))))))))

Lynne

Trevorhb
24th November 2014, 09:19
Thanks for all you good wishes, it really helps. We had a specialist nurse phone us this morning at 8.30 am as promised to answer any final questions, she will be at the hospital, along with the dietitian to meet us. You cannot ask for better support.

Jock
24th November 2014, 10:15
All the best Trev. My late Mother attended Bury for both cancer of the colon and MND and had no complaints. She even got the Stones played over the hospital radio station. :)

Jan
24th November 2014, 11:12
Wishing you all the best today Trevor, hope all goes well

Trevorhb
25th November 2014, 15:22
Well I am home, very sore tummy, but otherwise it went well. What a caring, kind, professional staff they have at the West Suffolk Hospital, excellent.

The procedure is uncomfortable, but it is over quite quickly. The consultant who I saw at my first appointment did it, together with a endoscopist and a number of nurses in a purpose built endoscopic unit. Once the mild sedation wears off, which is quickly, you are aware of a very sore tummy and bloating as well because they pump air into your stomach.

I was later moved to the EAU and then on to a ward which understands PEG feeding. Was on oxygen during the procedure and for a period afterwards because my blood oxygen was a bit low. Blood pressure was also up, but I think that was caused by stress.

Later that evening a lovely, kind staff nurse connected me to a drip and pump to slowly flush the PEG with water. Just after midnight when this was finished, she gave me my first feed, (sounds like a baby).

I was checked over by the consultant this morning and had a lesson about PEG feeding from our specialist nurse. She thought he had done an excellent job, no bleeding, no leakage, nice and tight. We came home this afternoon and Annette has already given me a feed, very easy. Nurse will call on Thursday and we have already received a call from the food company to arrange a delivery this Thursday. so far so good. :)

KarenaB
25th November 2014, 16:03
Fab to hear you're home so quickly Trevor. Felt to me for a few days after like I'd had a good kick in the stomach but it does settle down very quickly. The company that delivers the formula are fantastic and so helpful and they have an easy online ordering system you can register on. Are you given an information pack when you were discharged, there should be a card in there to register? No regrets from me having it done, it's the best thing I could have done and life is so much better without the stress of trying to eat and drink for me.

Take care

Karen xx

Artmart
25th November 2014, 16:06
Hi Trevor

Good to see you are back home and that it's all gone well.

Take care.

Arthur

Jock
25th November 2014, 16:10
Good news Trevor. Thank you for the write-up.

willsandco
25th November 2014, 16:36
Hello Trevor. That sounds quite uncomplicated, doesn't it? The respiratory nurse who came to day from Sheffield to demonstrate the BIPAP machine is booking me in in January in Sheffield. They are recommending a PIG instead of a PEG because they think it best I don't have procedure lying down. However, that is a worry for another day, isn't it? Lets get Christmas and New Year out of the way first, eh?
I am so relieved that you are home safe and sound. Hugs Joycie x

Terry
25th November 2014, 17:12
Hi Trevor;

Good to hear that all went well and you're back home. It might be a little sorer tomorrow but it soon should start getting better after that.

Love Terry

Jan
25th November 2014, 17:14
pleased it went so well for you, allayed some of my fears about making the decision to have a peg. How did the BiPap go Joycie?

Night walker
25th November 2014, 20:01
Hello Trevor
Really pleased you are on the up and thanks for saying how you found it as it will help me when and if I need to explain it.

Best regards
Sylv

Trevorhb
25th November 2014, 21:20
No it is not pleasant, I would not want to cover that up, but here I am sitting at home on the day afterwards. Annette gave me a feed this afternoon and we have just done a liquid feed, I used to really struggle to drink in the evening, now I do not have to worry.

Jan
25th November 2014, 21:49
Does it take Baileys over ice?!

Terry
25th November 2014, 22:10
That's defiantly the easiest drink for me to drink, Jan.

Count me in, Terry

Lycanthrope
25th November 2014, 22:30
Glad to hear it went so well and you're now home Trevor. Best wishes Becky x

marieline
26th November 2014, 02:16
Great to hear about you news Trevor, all well that end well. Now you can be a big baby and let yourself be pampered. An acquaintance here relished his afternoon glass of wine down the PEG. take care
Marieline

Jock
26th November 2014, 04:44
Am I right in thinking that sense of taste with food and drink is lost with PEGS? (the taste buds being well side tracked).

I'm also wondering if you can get drunk feeding booze through a PEG tube?

Steve
26th November 2014, 10:14
you obviously can't taste food going through the PEG (The taste buds being in the tongue) but in my experience it has no effect on food eaten orally. Some bulbar sufferers lose their sense of taste and smell but again this is unrelated to the PEG.

You could get drunk through it, it only bypasses the throat. Personally I like to taste my booze as I make my own but there is no reason why not.

Trevorhb
26th November 2014, 10:50
A very restless night with lots of pain when I move. Had to end up propped up in a sitting position after that I did get some sleep. On the positive side we changed the dressing and it looks clean with no leakage.

Terry
26th November 2014, 11:17
I can't remember lots pain but time is a great healer. No Leakage is a good sign and I hope you sleep better tonight.

Love Terry

Nettie B
26th November 2014, 11:51
Hi Jock.
Trevor's sense of taste has been changing a lot for the past few weeks ... so prior to the PEG. Things that he used to love like broccoli stopped being even palatable a couple of weeks ago.
They are quite fussy about what goes through the PEG and I don't know about alcohol ... I suspect it's a "No No". Trevor can't tolerate alcohol any more. Like orange juice (which he used to like too) the sharpness of the flavour catches in his throat and makes him cough/choke.
No fun this MND is it?

Terry
26th November 2014, 12:03
Hi Neetie;

It is very common for the taste buds to be affected with Mnd, sharp drinks or foods make some of us pull funny faces as we can't stand the sharpness.

Broccoli can be dryish and bits of it can go everywhere especially if not over cooked or cooked to soft.

Love Terry

Steve
26th November 2014, 12:24
There was someone on here who used to put a JD and Coke down every night. You need to be careful re. the consistency of whatever you put down in case it gets blocked. I don't think alcohol would be recco but can't see it doing any harm to the equipment, anything that would do damage to the tube would do far more damage to the person receiving it!

Interestingly the best thing to clean it is Coke as the acid present is also an active ingredient in the stuff i use to steralise my plastic brewing equipment.

Jock
26th November 2014, 14:59
Thank you for the replies.

You're absolutely right Nettie that MND isn't fun. We just try to adjust as we go along and get the best out of each day. :)

JAY TEE
26th November 2014, 15:29
I was formally diagnosed in May this year but had had a sore hip for a while and assumed was to long in the front row. I retired as well and can still manage walk about with a walking frame and using a stick. My speech not to bad and managed to give an interview on the radio last week for the Brum Pub Bombs. I hope the Riluzole will hold it off a while. I take each day as it comes. I have had wet room fitted and a builder coming next week to put in a good disabled access for the front door. I managed to go on a cruise 3 weeks ago but with the balance problem I don't think I will be doing the Bay of Biscay in a Force 8 again. The back up from the local team from the QE Hospital and the Speech Therapist and Podiatrist is excellent.

Trevorhb
26th November 2014, 16:07
One useful point if you go into hospital, they do not take responsibility for any valuables, unless you hand them over to be locked up. I had my iPad to communicate and needed it with me, so what we did was if I was away from the bed, or at night, it was locked up in the medication locker beside the bed. It is worth thinking about because there are people wandering about night and day on a ward.

Trevorhb
27th November 2014, 07:20
I had a much better night, did sit up in bed most of the night, but did manage to lay down in the early hours. Pain in control with regular applications through the PEG. It was done just at the right time, I cannot drink fluids anymore and eating is getting more difficult. PEG nurse and dietician coming today and should receive our first delivery of food.

willsandco
27th November 2014, 08:52
Yes, right time, Trevor. It is a brave move, but a sensible one. MIne is in January - lets get Christmas over first! x

Trevorhb
27th November 2014, 09:54
The first boxes of food and syringes have just been delivered. It seems the company has a warehouse in our town of Thetford, so the driver said we will probably be the first delivery every time. With the PEG nurse and dietician coming this afternoon, I must say the support we are getting is excellent.

Terry
27th November 2014, 11:43
Pleased to hear you had a better night Trevor;

The pain should improve tomorrow and things will get back to NORMAL??

Sounds like it was just in time and it is nice knowing you don't have to drink and eat if you don't want too or can't.

Just think of the money you are saving so get Neetie to drink the same stuff and no more food bill or shopping.

Thinking of you two, Terry

willsandco
27th November 2014, 12:13
that has made me chuckle, Terry! x Joycie

Nettie B
27th November 2014, 16:17
Thank you so much Terry. You have a wicked sense of humour to be sure!
Well the dietician has made me realise that we should be taking in a lot more fluid SO I have come up with a formula!
The decrease in the food bill that you predict could in future be in direct proportion to an increase in the SHERRY bill!

Terry
27th November 2014, 17:13
Me, not I Neetie;

Just wait till the next branch meeting and I will bring freshly cooked in butter bacon rolls and eat one in front of Trevor.

That's not wicked, just plain nasty, LOL, Love Terry

Trevorhb
30th November 2014, 09:43
Listening to the advice on this forum and my own observations, I think my tummy muscles have been effected by the PEG procedure. It hurts so much when I cough, laugh, yawn, or even breathe sometimes. This is making for very restless and sleepless nights, I dread going to bed. Hope it will pass soon, the feeding is no problem and the site looks OK. May go and have a chat with the GP tomorrow.

KarenaB
30th November 2014, 10:29
Trevor, it will pass. I had the same problems as you, felt like I'd been kicked in the stomach! Trying to turn over in bed, cough or laugh & other things we do naturally was very painful; but you will be fine soon and it will be much more comfortable for you, I promise.

Karen xx

Terry
30th November 2014, 11:13
Hi Trevor;

I was explained that it's like being stabbed, well that's what it is. I can not remember a lot of pain and like Karen says it will take a few days. If you're coughing alot it will not help.

My RIG leaked and was infected as a result of the opp but even then the pain was not so bad. I would drug yourself up for a couple of nights to get some good rest.

Get better soon, Terry

pete
30th November 2014, 11:45
Hiya El Tel,

For most of us knowing what being stabbed feels like ,thankfully we don't know, I t does amaze me why isn't this procedure explained better ,I think if it's so essential maybe the hospital should explain that having a foreign bit of plastic poked through your stomach wall and exit around your waist ,is going to cause more than a bit of discomfort and will depending on you pain level threshold ,and healing rates, will take a while longer than a few days. Or do they already ??

KarenaB
30th November 2014, 12:05
Trevor, can you take paracetamol? It helped me, I couldn't swallow well so used soluble paracetamol down the PEG especially before bed and it did help and made me more comfortable.

Karen xx

Terry
30th November 2014, 12:16
You see it on TV all the time Pete, they keep going on fighting and are saving the world the next day.

They say two weeks before you should do much, I was trying to say that the main of the pain probably happens on day two and three, after that I would hope things start improving.

I know I moaned a bit but I can't remember having that amount of pain. Jeanie got a bit criticized for posting the details of the opp, I like to know what they are doing, how they are doing it and why. You just can't win sometimes.

As well as the hole, the tummy is bruised and we know bad bruising can be bad for two weeks.

I went to the gym after two weeks but did not do tummy exercises till three. Whilst it did not feel normal, I felt much the same after so the movement did not harm it after three weeks.

Terry

Terry
30th November 2014, 14:54
Hi Trevor;

You can read a bit of my experience after the RIG opp on the 5th June, it looks like time has marred my memory, have a look at:-

http://forum.mndassociation.org/showthread.php?4445-The-RIG-and-breathing/page3

I think that the stitch caused a lot of pain for me as I think it was cutting my insides as it pulled, it was very tight and things felt better when that was cut.

Terry

Trevorhb
30th November 2014, 15:08
Thanks everyone for your comments today, I think the phrase "it feels like you have been stabbed in the stomach" sums it up perfectly.

When I read Jeannie's description of the procedure, it did put me off, that is why I believe it can be wrong to give too much detail. The doctor explained everything to me in great detail, before and again on the day, it is him that I will listen to and it did differ in some respects to what I was expecting. The procedure is tailored to you, your health and your condition at the time.

I do not know if I will have a follow up appointment with the doctor who did it, I expect not, it will be the PEG nurse who keeps and eye on me and we even have her mobile number and told to call at any time if we are concerned. The doctor will realize that you will feel "some discomfort" afterwards, but if they do not see you again, how do they know how much discomfort?

Terry
30th November 2014, 15:18
I don't think they do know Trevor;

I might be wrong but they don't seem interested in feed back, and you are just meat on a plate to them. I did try to see the specialist a couple of weeks later but it took a couple of months eventually to see her.

I don't know how they will improve things without reviewing.

Terry

Trevorhb
30th November 2014, 16:32
I suppose it has to be done and that's that.

Trevorhb
1st December 2014, 09:26
We discovered last night at 10 pm that it has become infected, that must be the cause of some of the pain. We are waiting for the PEG nurse to arrive to take a swab, but it does not look nice, leaking and some swelling around the hole.

KarenaB
1st December 2014, 09:42
Oh no, that's terrible, maybe because it was heavily covered the area stayed moist, shame they didn't leave it uncovered so the air could get to it. Hope they can sort it quickly for you Trevor.

Karen xx

Jan
1st December 2014, 11:36
thats not good, sometimes the old remedies are the best. I swear by manuka honey, it has fabulous healing properties and you can buy a jar at Holland & Barratt - Rescue cream i think it is called, I have used it on many infected area and as it contains manuka honey it has helped the healing process. Check with the nurse though, although it is 100% natural ingredients it should not cause any harm

edited to add I have been told that you can get the manuka honey in sealed packets from the pharmacy so that it is sterile

Terry
1st December 2014, 11:40
Oh that's just great Trevor;

They took four or so days to get the results back as they have to grow them. Don't get a general anti-botic as the infections generally need a special one. Infections can come from surgery and/or stomach normally but could be from outside. There is my story if you want to be depressed on:-

http://forum.mndassociation.org/showthread.php?4445-The-RIG-and-breathing

I had three different infections and I think they didn't come from the outside in. The names are there as is the names of the antibiodics.

It could be a reason for you being a bit hot. When are the stitches coming out as I think that will help pain wise.

All the best, love Terry

PS:- The manuka honey should be from the doctors or chemist as it should be a sterile one that I believe comes in small sterile sachets.

Trevorhb
1st December 2014, 13:11
No stitches Terry. She has taken her swab, put a loose dressing on it, but we have already had to change it because of the leakage. She did not seen very concerned, I am, maybe I should have gone to the GP.

Terry
1st December 2014, 13:20
I think it's quite common and they are quite casual. I think that the nurse is best as many doctors have not seen PEG's. Do you think it could be stomach contents as well coming out, as it would be a bad infection to leak that much.

Everyone, (the specialists) kept telling me it looked quite good and they have seen a lot worse but I knew it was not right.

I hope it's sorted soon, love Terry

PS:- it's not a bad idea to see your GP as they will log it and maybe give feedback to the hospital. Do tell him that normal antibiotics might not be right, perhaps take a list of mine as they might be the right ones.

KarenaB
1st December 2014, 13:41
I know I've gone on about it before but I'd highly recommend colloidal silver, I've used it from day 1 and no infection or healing problems over the last 5 weeks since having it done.

http://www.naturalnews.com/010038_colloidal_silver_natural_antibiotics.html

Karen xx

pete
1st December 2014, 13:55
Hiya Terry,

I don't know ,so I am asking you as you had the peg fitted. Do they give you at the time or before the risks of having any form of feeding tube, I can remember the specialist making lite of the whole procedure to me all those years back ,saying it was a simple procedure and would take less than an hour to complete, what wasn't said was the possibility of things going wrong, However after I did ask my neuro at the time ,and received the answer I knew was a lot closer to the truth, With any operation there are many risks ,we know that to be true by Joybelles complications and the results ,and I know myself having my carotid artery op that was a total waste of time in my case, because I ended up with it totally blocked, and extensive loss of facial feeling ,and nerve damage ,not to mention the unbelievable pain when they removed the drain tubes two days after.
Pete

Nettie B
1st December 2014, 14:56
Just been to the pharmacy to get Trevor's new lot of riluzole and to discuss pain relief. Lovely man, very sympathetic. We've been using Calpol by day and cocodamol by night. He suggests go up to cocodamol day and night. If
that does't help the next step is ibuprofen. He encouraged me to contact GP of still worried.
I think nurse appeared casual as maybe this infection doesn't seem too bad to her as she will see much worse. Obviously when you have a painful problem you can't see it like that. It was a shock to see it and being me I blamed myself for doing something wrong but she reassured me that was not the case ... more likely happened as the stomach is not sterile environment and this happens sometimes. I see her point about my going overboard with the dressing as air helps healing. Now trying to put less on but enough to cope with "products". Chicken and eggs come to mind. Nurse back on Thursday or sooner if we need her. Hope new pain relief schedule helps.

Terry
1st December 2014, 15:09
I did ask a lot of questions Pete;

From my Mnd specialist, who provides the best information and a few others. I did not think that I had any choice but to have it done as ifg as was ill I would /did find it hard to drink. I was a bit Pixxed off them not allowing me to have a PEG, they guided me wrongly in the hospital after my specialist and I wanted it and not a RIG.

I was told of most of the risks but it is made light of. Also afterwards, when I had problems, (I still have problems with slight blood very occasionally and granulation) they did not help me as I wanted and made light of it giving me bad information.

However, I would have thought over fifty percent go without problems and little pain after a few days. I knew mine might be a bit worse as I'm quite active.

Love Terry

Seriouslypinkchick
1st December 2014, 17:21
Trevor just like to say hi, I am a carer for my dad who has this bloody awful disease he was also diagnosed in March this year and for first few months things seem to be going ok and slow ish pace but last 3/4 months have just really going downhill and not fast rapid dad can't walk very ffar at all can't walk at all unaided and has to go in wheel chair outside his speech is going and there are times when I just don't understand him he on a soft diet but had peg fitted in May but not using at min but I don't think it will be long my dad is 56 and my life has been changed complete by this as I am only child and all family just don't seem to care so it's just me and dad I given up my job to look after him it's so bloody hard but one thing I learnt since dad's diagnosis is that we are not alone and the people on this forum are amazing strong people x inbox me if you like to chat more I must say I get comfort from people on here because everyone understands how difficult this really is x all the beat Jennie

Terry
1st December 2014, 18:23
Hi Jennie;

We can sort of understand. I hope you have some help and a fall back plan. The hospice is a great place for support for you and your dad.

Regards Terry

willsandco
1st December 2014, 18:41
Jennie, have a word with a speech therapist and see if you can get some communication aids for Dad, if you haven't already got something! It makes such a difference. It is such a sad, distressing place to be but there is loads of help available Love Joycie xx

BlueEyesOhio
2nd December 2014, 04:25
Hi Jennie,
What a wonderful, thoughtful daughter you are to take care of your dad! This disease is not easy for the one who has it or the care giver. My husband takes care of me and I SO appreciate him. People who care for MND patients are the best. Just like our Alison who comes here and is a carer for her friend Jean. We are lucky, lucky blessed to have such lovely people caring for us.

Lynne

Trevorhb
2nd December 2014, 11:44
Another painful, restless night, PEG is still oozing, but is no worse. We find adding too much too soon through the PEG causes bloating and a sick feeling, better to split the food and drinks up and have them at different times. On the positive side I started doing my stretching exercises again today and have my rise and recline chair delivered this evening. Bought it off a local firm who offered me free delivery.

Trevorhb
4th December 2014, 11:10
PEG rotated this morning for the first time. Nurses seen happy with it, but it is still oozing. Just a dry dressing on now. Only pain relief at night so I am making progress.

Terry
4th December 2014, 13:15
So glad to hear it's feeling a little better Trevor;

Are you managing to sleep at nights now, life is so hard if you don't. Even the best people get grumpy with little rest and food. I just had a rough night for no real reason and could not move this morning.

Any news on the infection, post the name and the name of the medicine. You might have some leakage, I got told that mine was not and a month later it was.

Love Terry

KarenaB
4th December 2014, 13:15
That's great to hear Trevor, so glad you are a little more comfortable. It will get easier for you I promise.

Karen xx

Trevorhb
4th December 2014, 14:07
A little better last night Terry, the problem is I cannot lay flat, my stomach hurts and the main trouble is a build up of saliva which makes me choke. My medical team are on the case with a change of medication and a suction machine is on order. The result of the swab is still not in.

Davec
4th December 2014, 14:28
Hope you get what you need soon
Dave and Sharyn she sends A careful hug xx

Nettie B
4th December 2014, 15:39
I'm trying to speed things up about the saliva medication. We last heard about a possible solution since a letter from consultant was sent to our main specialist nurse on November 19th, pre PEG. Since then haven't been able to contact her and neither have PEG nurse or consultant's secretary who I spoke to yesterday. We all presume she must be ill.
Secretary phoned me today to suggest that I ask GP to follow up suggestion sent in the same letter (copy) as above. GP will phone tomorrow morning then maybe Trevor may get some different help with the saliva problem. Everything else so far has failed.
Fingers and toes crossed ... or the phone will have to be hot to someone else!

Springtime
4th December 2014, 17:49
Hi Nettie,
I ring our GP whenever Jim has any meds suggested by MND team or Respiratory team and ask her if she has not heard yet from the appropriate proffesionals when she does could she please put the meds on repeat and usually get a phone call the following day to say the repeat perscription has been done. I think that with MND so many proffesionals are involved (not complaining) that sometimes one thinks the other has sorted perscription meds. Springtime x

Nettie B
4th December 2014, 22:43
Thank Jane. I've been struggling with that one. XX

Trevorhb
5th December 2014, 10:44
Slept much better last night, actually laid down for a period as well. PEG site is still oozing very slightly, but is clean and healing well.

GP rang this morning, changing medication to control drooling.

looking good! :o

Artmart
5th December 2014, 10:50
Good to hear that Trevor. Better sleep will help all round.

Best wishes

Arthur

Springtime
5th December 2014, 10:57
Goods news all round then Trevor. x

Nettie B
5th December 2014, 11:23
GP phoned and is sorting prescription to help Trevor with saliva and sleep. Things may be improving now.Tiredness has been so bad for us both.

Trevorhb
14th December 2014, 12:11
Three weeks tomorrow since I had my PEG. The infection has cleared up, the wound is clean and I am showering as normal. We are passing all liquids and some food through it, the food has been switched from the supplements in the bottle, to one in a bag which gives a more balanced addition to what I am eating. We have choose at present to add food and drink during the day because that seems more natural but it is very restrictive. We have come up with a time chart which gives Annette two clear hours in the morning and again in the afternoon. This morning we have been out Christmas shopping and I drove my car for the first time. So good progress, but given the choice, I would rather be without out it.

Jock
14th December 2014, 12:21
Your last line reads as if you regret your decision to have a PEG fitted....have I got the wrong impression?

Springtime
14th December 2014, 12:22
Good Afternoon Trevor,
3 weeks have gone very quickly, so pleased that everything has settled down and you are finding a way forward and routine. It must have been fantastic for you to get behind the wheel again, you must have been up and out early for Christmas Shopping. Take Care and hugs to you and Annette. Spring xx

Ellie
14th December 2014, 12:41
Thatís great to hear Trevor. Of course none of us want a PEG, but it does take some stress off our daily lives.
Are you using a food pump with the feed? If so, at how many mls/h?
I have a pump and just pop everything into a backpack on the back of my chair if Iím going out, nothing shows.
All the best,
Ellie.

Trevorhb
14th December 2014, 14:14
Thatís great to hear Trevor. Of course none of us want a PEG, but it does take some stress off our daily lives.
Are you using a food pump with the feed? If so, at how many mls/h?
I have a pump and just pop everything into a backpack on the back of my chair if Iím going out, nothing shows.
All the best,
Ellie.

It may be the way forward for us, at the moment our regime is very time consuming and does not let Annette have much freedom. My hands are too weak to open the clip, so Annette has to do the lot. Jock - there was no alternative for me to having the PEG as my swallowing is so bad, but to answer your question, do I like it, the answer is no.

Ellie
14th December 2014, 14:48
Using a pump would certainly free up Annette's time, she could just set it up and let it run. It's very simple to use. You can decide how much feed to take and over what duration.

Nettie B
14th December 2014, 14:59
Ellie. I admit it would be nice for us to go and do things or visit people for more than 1 or 2 hours at a time. Do you drive and if so what do you do with the backpack? It sounds more natural than a pump running overnight. We are doing alright at the moment as ots a bit cold a d miserable to go far but it would we nice to have more freedom as to where we go and when.

Ellie
14th December 2014, 15:27
No, I'm in a wheelchair Nettie. The feed tubing ("giving set") is easily detached, should Trevor need to temporarily interrupt feeding. Or, indeed, perhaps he could manage to keep attached to the pump and put the backpack on the passenger seat whilst driving (does not need gravity as it's a pump) The dietitian/PEG nurse or the pump supplier can show you everything and then you can both decide whether it is suitable.
Ellie.

Terry
14th December 2014, 15:50
I have been shown the back pack and I think it could be linked up and carried or be connected and disconnected. It houses probably the same pump and a feed bag so it just needs connecting and switching on. It is ideal for putting on the back of a wheelchair but could be used in most places.

Terry

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