Breathing

[Jeanette Pearce]

Hello @Bexxy
I have a Social Worker... she informed me that I should contact her for any concerns and liaises with my OT’s and nurses

So sorry to hear all your exhaustive efforts... I have carers during the week which means my husband doesn’t get so exhausted

i hope you get more support when you contact the MND team xxx

[matthew55]

I have a PEG so any medication is simple. 😊x

[Music man's wife]

Hello Bexxy, I'm so sorry to read about your husband's condition and total lack of help.
My hubby uses a ventilator and he takes Lorazepam, an anti anxiety med, before he goes to bed. That settles him for the night.
He was prescribed Lorazepam for severe breathlessness and just got into the habit of taking it at night, something his GP agrees with.
I would consider changing your GP, ours will come out whenever we ask, though usually a phone call does it.
Sending a hug.

[Bexxy]

He took it before we got the mucodyne as I read on here that guifenesen was helpful. He hasn’t been taking it for ages but tried it again today. The mucodyne made him retch so much we had to get the capsules instead. I mean, who decided rum was a good flavour for medicine?!

[Ellie]

Cough medicine!! Has he been taking that lately - it can have a dramatic effect on mucus?

If he has, which one?

[Bexxy]

Hi Lynne

No it wasn’t a joke so thanks for advice. It doesn’t seem to be the hamster as he has been fine plenty of the time and has also really struggled to breathe when upstairs where the hamster doesn’t go. But it was certainly a consideration.

Matthew- a community nurse, now that sounds like a dream! I will ask anyone I can when I make my calls tomorrow. Thanks.

my I have also noticed that since feeling like this my husband retches when he has strong flavoured medicine, like cough medicine. Proper retching that if he had eaten it would all be brought up. Anyone else experience this? Also in the same period his bowel movements have been loose and infrequent. Just throwing it all in here in case it’s connected!

thanks

[Lynne K]

Hi Bexy, I see that you’ve had lots of advice today which is good, but nobody has commented on allergies. Was it a joke about the hamster in the room? If not then move it or any other animals out of the rooms that your husband uses and vacuum every surface well. I used to feel my chest irritated when our cat was in the room. It went missing eighteen months ago and I’ve had no such issue since. Good luck for a quick solution, Lynne x

[matthew55]

I got mine from my community nurses and it can go as far as you'd want it. It's the same as dentists use. x

[Bexxy]

Thanks Ellie. Good to know. It’s not knowing what to expect and what to accept that is so hard. I will have a list of people to get on to tomorrow. I frequently make in excess of 20 calls every day of the week just chasing things up for him. His oxygen saturation level was around 95

[Ellie]

the question is why he has so much mucus if he doesn’t have an infection. Is this normal?

It's a 'new normal' so to speak! You're doing great in trying to keep his airways clear of thick, sticky mucus - extra nebs & fluid should make a difference. There is probably a normal amount of mucus being produced, but A) it isn't being swallowed normally and/or B) it's thick because it isn't being diluted by normal amounts of saliva and/or water.

Even tiny amounts of food in the airways can make mucus green.

does anyone use a suction machine? Should I try and get one?

I have a feeling that depends where you live - Nurse, OT, Physio, Hospice, Clinic or sometimes nobody 😣

Keep up the good work.

One thing - can you remember what his Sats figure was?

Love Ellie.

[Bexxy]

Hi Matthew

Is it easy to use? Does it not make you gag? And does it get the mucus from quite far down? Who/where did you get it?

thanks

Rebecca

[matthew55]

I have been given a suction machine, and it works great, it's just a little large for everyday use. Unless you're not moving obviously. 😄x

[Bexxy]

Sue

I’m sorry you are in this sinking ship too!

I think the overriding feature of MND is hopelessness which I find very hard to deal with as I do not give in or accept defeat easily.

[Bexxy]

Thanks Ellie. I would feel much more alone if it weren’t for you and this forum. I just feel so bad for him. Yeah I think the local hospice is our best hope of help. I am going to find someone to do a referral tomorrow, possibly MND coordinator at royal London as that will be two birds with one stone.

in the meantime, I have upped my game on the mucus attack! Doing nebuliser every 1.5hrs followed by cough assist with ventilator rest of time and also plenty of fluids. We have had a fair bit of greenish mucus up already today which is good. Hopefully this will have an impact by bedtime. I am also trying to buy a riser recliner on eBay to go in the bedroom so if he needs to sleep in the chair I can still be in bed. I think he has only managed one full night in bed in two weeks even though it’s an electric profiling bed.

the question is why he has so much mucus if he doesn’t have an infection. Is this normal?

does anyone use a suction machine? Should I try and get one?

thanks

rebecca

[Suefromwakey]

Bexxy

I think you and me are pretty much in the same boat, looks like a trip to nowhere though eh?

The word abandoned keeps coming to mind,

Sue