Home visit Community Respiratory Team

[Heather R]

Thanks

[LindaB]

Heather R yes today I couldn't try the new machine with the consultant in the room...she said it wasn't allowed because covid is airborne. 🙄

shelly21 yes more relaxed to be at home. You're right the anxiety of travelling doesn't help breathing!😉

Music man's wife Good point I need to check about battery for number two machine.🤔

Ellie I think I had the mask so tight that it made my nose sore...but I can't stand the 'farting' noises😂

💙💙💙💙

[Music man's wife]

Fantastic that you are getting decent support Linda, just to say you can also get an external battery for those ventilators. Great if your planning to go out.

[Heather R]

LindaB glad you’ve made some progress with things, and very impressed that the respiratory consultant visited you at home. I only get to see respiratory physios at the hospital or on zoom (hospital equivalent of), never seen a consultant. I certainly appreciate having 2 NIV machines with batteries, reassuring and can have them in different rooms. So now I have one in the sitting room, but gather that we have to be mindful if a visitor comes, and you have Covid (!) but don’t know it, they are more likely to get it in your sitting room if you have just been using machine. They may need to wear a different mask. At first an MNDA visitor said MNDA didn’t let them visit if you were using ventilator, but that seems to be not the case now??? X

[Ellie]

I’ll add the name when I remember….it’s an eye drop apparently

That sounds like Atropine.

Also a different mask…fits under my nose and over my mouth….give my poor nose some relief.

Oh poor you, I didn't realise you had an uncomfortable mask 😟 I have one of those under nose-over mouth ones and find it very comfy indeed.

…breathing being such a big issue I was glad to feel better supported

So glad you have access to a home respiratory service.

Sleep well 🤞🤞😘

[shelly21]

LindaB thats good news re the home visit. It must help being in your own environment re stress etc and the usual issues re travelling etc. Glad you are getting support 👍 x

[LindaB]

Update. Respiratory consultant from my hospital team undertook a home visit today. Makes so much sense for us to be seen at home IMO

Anyway she went through the usual questions & my list. My friend was here & I used the predictable app to communicate.

I discussed the sleepless nights when I’m struggling to clear secretions off my chest. (Not often but occasionally)

She mentioned various medicines that thin secretions…however as it’s not a daily/nightly occurrence I wasn’t sure…we agreed on a prn medication…I’ll add the name when I remember….it’s an eye drop apparently 😳

I was asked how many hours I used my NIV….which is roughly 16 hrs daily. She then agreed I need a second machine (apparently over 15 hours).

So I have a second machine. Which isn’t as ‘high tech’ as the one I have & not recommended for overnight use if taking anything sedating. So I’ll use it day time watching TV etc. The name on the machine is Vivo3

Also a different mask…fits under my nose and over my mouth….give my poor nose some relief.

So I’m on her list of patients for home visits….possibly monthly.

I asked about using a nebuliser….she didn’t agree…I didn’t press the point.

She gave the usual advice about staying hydrated & also pineapple juice (@Ellie) to keep secretions from being overly thick.

Thats about it…breathing being such a big issue I was glad to feel better supported 💙💙

[billy106]

Got to say Linda , I usually have to phone the hospital up to adjust my wee machine.ie when it has to be upped.like everything you cant rely on people getting back to yourself whether its Consultants or doctors to review stuff. Blunt as it is .You aint gonna get the treatment you deserve baby. zzzzzz.

[LindaB]

Heather R thanks - some might say stroppy 😂


I do strongly believe that all professionals...health & social care....should deliver a high quality service.

XX

[Heather R]

LindaB I’m sure you must have been an excellent social worker, with such expectations of high standard of care. Sorry services are not ideal where you are, but hope your expectations and assertiveness will get results. Xx

[LindaB]

Ellie oh that wasn't mentioned....duly noted😘😘

[Ellie]

Ellie who undertakes the service?

Don't forget that I'm under a different nhs. Servicing is subcontracted out and my Nippy is serviced annually (10,000hrs is the recommended servicing interval but my annual service is done on ~4,000hrs)

Is the SNIP test the ear lobe blood test? She had a machine that processed the readings.

No, it's a really simple, quick test which measures your sniff effort and is a very good indicator of respiratory function in ALS.

[LindaB]

Unfortunately it is up to us to be our own advocates. We must do our own research and ask the right questions to get answers.

Keep up the good work.

I respectfully disagree....not everyone has the stamina or skills to research the 'right' questions. Our respective health care teams should be providing us with all relevant information as standard.

👍🏻

[LindaB]

Ellie who undertakes the service?

Is the SNIP test the ear lobe blood test? She had a machine that processed the readings.

XXX

[xraydude]

Lisa, I'm glad to hear that you have put together a good support team. Unfortunately it is up to us to be our own advocates. We must do our own research and ask the right questions to get answers.

Keep up the good work.