Hello I’m Douglas

[Ellie]

Thanks Douglas.

Your IPAP seems very high for someone who doesn't have an underlying respiratory condition, such as asthma or COPD.

Any idea if it was always set so high?

Love Ellie.

[Dis1960]

I asked Dr Bentley about this - it was originally set lower but due to the swallowing problems ( see Jaffa Cake ) it was upped. He did say it might be reduced in time if the target range is overshot

[Ellie]

Hi Douglas,

The rationale that your IPAP needs to be so high due to your "swallowing issues" is odd, at best given that a significant percentage of us with ALS/MND develop swallowing issues, hence the need for a feeding tube, and concurrently use NIV. But a typical starting IPAP level used with ALS is 9-10, with small incremental increases up to maybe 12 if necessary, and that's irrespective of having a feeding tube in situ.

Anyway, I hope you find that IPAP level of 24 comfortable at least? (I still think 24 is very high, fwiw)

Big hug - you must be thoroughly fed up by now

Love Ellie.

[Boiler68]

Hello Douglas

Been following your saga and hoping you are comfortable. We were at Wythenshawe yesterday for blood gas check..
Don't know about you all but Ellie's contribution to this chat is reassuring. Glad she (and Terry) are keeping an eye on you!
Best wishes to you.
Boiler xx

[Dis1960]

Well I hope it’s not a glitch but last nights CO2 was 5.1

Apparently the initial setting after the Jaffa was 26

The nose mask for the PEG trial started at 12/5 and the last hour was spent at 16/5


Boiler you weren’t Chris in bed 12 or Allen in bed 15 were you ��

Ellie ask me if I’m fed up on Monday after the wedding anniversary Saturday and my birthday Sunday

[Terry]

Hi Dis;

It sounds like they have put the right switch on now. I would expect (5.1) after the first 8 hrs night nearly 3 weeks ago, but hey, what do I know.

Great wedding anniversary then, I bet you never got her some chocolates.

Nice to meet others on the forum even if in hospital.

Hope you have a alright birthday.

Love Terry

[Dis1960]

No CO2 reading last night - the nurse said they didn’t need to !

[Ellie]

The nose mask for the PEG trial started at 12/5 and the last hour was spent at 16/5

Hello young man

I'm guessing you mean you started off on an IPAP of 12.5 and ended up on 16.5 for the last hour? (I know it wasn't your mask mask)

Were you struggling at 12.5 - is that why it was ramped up? I know I'm kind of badgering you but given they didn't have your NIV in Pressure Support mode, I'm left wondering if it's on the optimal settings for you.

I put my IPAP to 24 last night to feel what it was like - it was very uncomfortable!!! (My IPAP is 10.5 and I have swallow difficulties too, having failed the biscuit test many moons ago)

Happy Anniversary to you and Chris, though I know you'd much rather be at home with her

Hugs to you both.

Love Ellie.

[Dis1960]

They want to use the same profile for both masks

24 into the nose mask was not bearable 22 or 23 were ok but 16 was better still

[Ellie]

They want to use the same profile for both masks

(I am holding my tongue here!!)

Your Nippy can have 3 different profiles set for that very reason - people's daytime settings are often different to their night time settings, for obvious reasons, and for different mask types, as in your case.

The type of mask you wear is relevant to your IPAP setting, so having different profiles is not uncommon.

Love Ellie.

[Dis1960]

So 21st 5.1
22nd no reading
23rd no reading
24th 6.1
25th 6.5

They are talking about moving me to a local authority assessment bed as there’s a waiting list for PEG
The doctor is finding out about where on that list I am and has stated the pressure is high due to bulbar problems

[Terry]

Thanks for the update Dis,

I was hoping that co would be improving. Hope your OK in there.

Love Terry

[Dis1960]

Well tweaking continues pressure down to 22, slightly different rise time and 6.1 ...more pertinently it was a much more pleasant night on the reduced pressure

Oh and the PEG test went well

[Terry]

Hi Dis;

PLeased something has gone well, any news on the date of the opp.

Love Terry

[Dis1960]

Back up to 6.5

On the positive side my Birthday fundraiser on Facebook has raised £190 for MNDA