Oxygen

[Jody123]

Hello everyone

My dad has been told today that he needs to have oxygen, we are not sure if this is just at night, but going to hospital on Monday to get it sorted and bring home. the consultant who rang them today, said its to give my dad more time. This has upset my mum so much by her saying “more time”. Could anyone shed any light on this, my mum has asked me to ask, is it a bad sign that he has to be using oxygen or is this normal for this condition? Doesn’t it mean he has drastically deteriorated?

Thank you in advance xxxx

[Barry52]

Hi Jody,

I wonder if the terminology has been mistranslated as normally oxygen is avoided in MND since the patient is not able to expel enough carbon dioxide. The recommendation may be none invasive ventilation (NIV) via a mask which helps to regulate the airflow. It doesn’t mean that your dad has drastically deteriorated as you put it and the system will improve his situation. Why not have a family discussion with the respiratory team for clarification.

Best wishes,
Barry

[Ellie]

Hi Jody,

I'm sorry your Dad's Consultant's turn of phrase upset your Mum - out of the entire conversation, I'm quite sure all she can focus on is that "more time" wording 😪

I second what Barry said about oxygen - it's by and large a big No-No to use on people with MND - and I am presuming Monday's appt is all about NIV (Non Invasive Ventilation) - in which case the Consultant should have said how much it can improve Dad's overall quality of life by increasing his energy, sleep quality and appetite. NIV machines draw air from the room, i.e. regular air.

If you want to read about what's involved in supporting breathing, here are 2 info sheets which you all may find useful:
https://www.mndassociation.org/app/u...g-problems.pdf

https://www.mndassociation.org/app/u...ne-disease.pdf

Here is a link to a website:

https://mybreathing.mymnd.org.uk/

But please do ask us questions if you have any.

Using NIV/BiPAP for the first time can be a wee bit daunting so, if your Dad fights it, maybe he can wear it for an hour or so watching TV as a distraction (it's too easy to just focus on one's breathing and the machine's rhythm, but if he's distracted by a good war film, he hopefully won't notice it 😉)

I always advise people to bring home 2 different mask types to try and also not to give up if their mask isn't comfy as there are other types available.

Take care and all the best to him on Monday.

Love Ellie.

[DeeH]

Hi Ellie

Thank you for the link.

This explains why they plan to send out an overnight O2 monitor for my husband. Though if his snoring is any indication, he is not having issues with breathing at the moment.

Hi Jody

I have found that not all doctor's are great at explaining things in lay person's terms and this can be cleared up on further conversation. I would just phone and ask for clarification.

Best wishes

Donna

[Ellie]

DeeH I sympathise having had to listen to a honking hippo for years. Then I couldn't even kick or thump him to stop the snoring 😌😟 but when I got my own hospital bed... Ahh, bliss (every cloud )

What happens in ALS/MND is, as the diaphragm and intercostal muscles weaken, we can't breathe in sufficient O2 nor expel as much CO2 as we should, leading to headaches and lethargy - that's when NIV/BiPAP can make a difference.

Love Ellie.

[DeeH]

Thanks Ellie, for your knowledge

He is having headaches and is tired but when I check his O2 obviously during the day it is around 99%.

Just got a phone call about OT and Physio, community visit on Thursday.

Hope for helpful advice

Love Dee