Ventilation

[Gillette]

I had to go to Wythenshawe Hospital today for another appointment [the 3rd in 3 weeks!]. I was under the impression that it was to get a second opinion about a breathing issue. First they did the blood from the earlobe test, then the cough test. As I suspected the cough has weakened since it was tested there a fortnight ago. They talked about a Cough Assist but I explained that the physio I saw 2 weeks ago had said that I shouldn't have one. Unfortunately I can't remember what reason she gave and it seems she did not say anything about it in my notes.

The result of the appointment with Dr Choudhry was that he wants to admit me for several days to set me up with a ventilator so that I am used to it when the PEG is put in and also for another procedure. There is some doubt about me being able to have a GA for the second procedure so an anaesthetist has to be consulted.

Dr Choudhry is hoping to have me in next week.

I'm feeling a bit overwhelmed with it all at the moment. I had no idea that I was likely to have to be admitted for the breathing. It feels as though the MND is running away with itself.

[Terry]

Hi Dina;

It seems good that they appear to be ahead of your symptoms but I can see it's overwhelming. I guess it's easier to go in sooner than later because I would find staying in hospital extremely hard now.

I don't think there's a problem getting a Cough Assist machine because I reckon that once you have mastered it you don't have to use it, but it's there.

They talk about having it ready for the feeding tube opp but what other opp are they planning on?

Do you know what your blood CO2 and oxygen levels were?

Do you have headaches when you wake up during the night or first thing in the morning and/or extremely tired during the day?

Three days in hospital, great.

Love Terry

[Lynne K]

Oh dear Dina. I feel for you. I hope that everything works out for you. Take care. Love Lynne x

[Deb]

Hi Dina,

So sorry for you. You must feel totally overwhelmed with everything going on. It sounds like such alot to take in.

Thinking of you and hoping you are comfortable.
Love Debbie x

[Ellie]

Hi Dina,

I'm not surprised you're in shock and feel as if things are running away on you

It's a shame the Wythenshawe insists on admitting MND patients for several days to start them on NIV - many clinics don't need people as inpatients as settings are pretty standard and it's nicer for us to get used to NIV in the more relaxed setting of our own home.

If they suggested you go in for a one night sleep study, that's appropriate, but I do question the benefit to people with MND needlessly going into hospital... An overnight pulse oximetry test, at home in your own bed, in conjunction with PFT results done in clinic or a respiratory department which don't take long is enough to prescribe a NIV machine including its settings - no real need for a hospital stay

Do you know any of your Pulmonary Function Tests (PFT) results? For example, your FVC/SVC, MIP, MEP? Or a SNIP test? (sorry for all the acronyms!)

If you do need NIV, you'd need to have a good chat with the anaesthetist about having a GA and, if that op is vital, can it be done without a GA - epidural, LA, twilight sedation? You don't mean the feeding tube PEG procedure, do you???

Not everyone gets morning headaches with high CO2 levels, they may be marginal, but if you start using NIV, your breathing will be supported and should give you more energy.

Food for thought Dina.

Big hug.

Love Ellie.

[Sheila]

Hi Dina, I am not surprised you feel overwhelmed by it all I would be as well. And I think my time is coming soon. I had a overnight pulse oximetry done in my own bed , like Ellie said. Try and take one day at a time, and we are all here for you, sending hugs.
Love Sheila.

[Gillette]

Thank you for your support Terry, Lynne, Debbie and Sheila.

I was due to travel to Essex this weekend to see my new granddaughter, who was born on Saturday. I am rapidly losing the movement in my arms and wanted to hold her, while I still could. However, on that same day, it became obvious that I am not able to make the journey, which was hugely disappointing, and more than a little scary. I will still be meeting her this weekend as they are travelling up here instead, which is wonderful. But, even without the MND stuff that's happening, my emotions feel battered.

[Lynne K]

Good morning Dina. Sorry about you rapidly losing the use of your arms. It's smashing that your daughter is bringing your new granddaughter up to see you, enjoy. Love Lynne x

[Gillette]

Hi Ellie, thank you for your reply.

Actually, I don't mind being an in-patient (famous last words as I have no idea what Wythenshawe is like!), it's more the fact that I had no idea it was a possibility at this stage. I also had no idea that NIV was a possible outcome at this time. I have been trying to prepare my Advance Decision but each day it gets more complicated to work out what my options are.

The only test result I know is to do with the cough. Two months ago it was 200 - 250, three weeks ago it was 150 - 200 and now it is 150.

The chat with the anaesthetist is about the second procedure, not the PEG. The thoracic consultant has said the PEG should be done first. I had been booked in to have the second procedure done yesterday, at a different hospital. However, my MND consultant and I agreed that because of the dropping of oxygen levels periodically through the night, it would be better to have it done at Wythenshawe.

[Ellie]

Oh Dina, I am so happy for you that you'll get to meet your new baby granddaughter this weekend - how special that will be.

It's good that your daughter is coming to you, enjoy every minute with them.

It makes sense to defer the op until post-PEG procedure and see how that goes before committing to a GA.

I can only imagine your ADRT dilemma - it must be very hard to decide on interventions whilst their 'need' come hard and fast, and without warning. If it helps, any intervention can be reassessed at any time, with or without an ADRT and any unwanted intervention can be stopped or removed/not used.

I know you were not expecting NIV/BiPAP/Nippy to be started at this point, but using it overnight should give you extra pep during the day, improving your quality of live.

The figures you quoted look like Peak Cough Flow values, which would tie in with what you said about the Cough Assist.

Have you a date for your stay?

Love Ellie.

[Gillette]

Hi Lynne, thank you. Yes, I'm looking forward to them coming. By the way, I must ask my 6'4" son how he feels about being a daughter! Ha ha ha. He gets fed up when I call him "my little boy" because he's the younger of my two sons, so he's sure to enjoy having a quick transition!

[Gillette]

Hi Ellie,

I certainly hope the ventilator improves my energy levels! As for the ADRT, my difficulty is in not knowing what the procedures are, what happens with them and what options there are.

I don't have an admission date, he was hoping it would be next week. Apparently I am likely to receive a phone call one morning telling me that there is a bed for me that day.

[Sheila]

Hi Dina, so pleased you are meeting your granddaughter for the first time, how exciting for you.
Take care
Sheila.

[Deb]

Hi Dina,

I can understand how you must feel totally overwhelmed with so much going on and it must have been really upsetting not to see your new granddaughter last weekend when you were all set up to go. I am so sorry about everything.

It will be gorgeous to see her this weekend, however so enjoy every second and big congratulations to the new mum and dad.

Our sons are both 6 3, like their dad but they are still my little boys !

Love Debbie x

[Ellie]

As for the ADRT, my difficulty is in not knowing what the procedures are, what happens with them and what options there are.

Hi Dina,

I didn't know if that is a rhetorical question, or not!

Whilst it is an obviously difficult topic, it is something many of us do think about and document our wishes to have control over our treatment / interventions.

If you want detailed info on what an ADRT involves, I can give you a link BUT it's very detailed and obviously contains end of life discussion, which you may not be ready to read.

If you want a list of a few 'treatments' involved in an ADRT (e.g. NIV) I can give you a basic idea of what may be covered.

If indeed you are looking for info on ADRTs, leave it until after the weekend maybe...

Love Ellie.