Test

[Jojo1962]

When do they do blood gas test?
does oxygen levels have to be low before it’s done

[shrew]

My late Husbands MND nurse used to come to the house and take the blood from his ear. Or he had it done at Preston hospital on his routine appt

[shelly21]

Firstly you would have a lung function test at the hospital. Are you due to have one?

[Jojo1962]

My late Husbands MND nurse used to come to the house and take the blood from his ear. Or he had it done at Preston hospital on his routine appt

Had lung function test fortnight ago but haven’t heard anything yet

[shelly21]

my experience was that i did a full lung function test every 3 to 4 months. also the respiratory team sent me an overnight oximetry monitor. then after a year they did ear gas test. maybe when you have our appointment re your results you could speak to them re your concerns.

[Claireflo]

My dad's consultant refused to send him to the NIV/sleep clinic as he wasn't having headaches when he woke up. His breathing was declining and the physio had to write to the consultant to get the referral.

They tested his blood gases and said his bicarbonate levels were raised. He did an overnight monitor in June but looks like his appointment to find out the results is not til mid September.

[Ellie]

They tested his blood gases and said his bicarbonate levels were raised.

If your dad didn't have the misfortune to be under the 'care' of that consultant, he'd most likely have been offered NIV by now... 😟

[MMG]

My husband has been routinely tested every 3 - 4 months since diagnosis. Full lung function initially and regular routine overnight oximetry which we send back through post and we get a letter a couple of weeks later telling us the results. He then gets blood gases test ( via earlobe) at each visit and we get results immediately.

He still has no breathing problems but still regularly tested. We know the symptoms to look out for and can have an emergency appointment if symptoms start.

We have had more contact with respiratory consultant than neurologist.

[Jojo1962]

My husband has been routinely tested every 3 - 4 months since diagnosis. Full lung function initially and regular routine overnight oximetry which we send back through post and we get a letter a couple of weeks later telling us the results. He then gets blood gases test ( via earlobe) at each visit and we get results immediately.

He still has no breathing problems but still regularly tested. We know the symptoms to look out for and can have an emergency appointment if symptoms start.

We have had more contact with respiratory consultant than neurologist.

What is ear gas test? I thought they took it from a artery in the arm when I was googling

[shelly21]

Jojo1962 thats the trouble with Google. They take the blood from the ear.

[Claireflo]

MMG that's great that your husband gets such regular testing. It must be really reassuring to know it's being monitored and that he doesn't have any issues so far.

[Heather R]

They take some blood from a prick on your earlobe, after warming it up with a bag of hot water you hold against your ear for a few minutes to increase your blood flow. Bit like a staple gun I always think! No big deal x

[Claireflo]

If your dad didn't have the misfortune to be under the 'care' of that consultant, he'd most likely have been offered NIV by now... 😟

Indeed! The NIV clinic didn't seem to agree with her "we treat symptoms not numbers" approach as the blood gases clearly showed his breathing is declining. They indicated they would likely recommend NIV, depending on the overnight monitor results.

September seems quite a way off but equally he's managing for now other than the continual issue of mucus (not sure how easy it will be to use NIV with the mucus issue) so hoping he can enjoy the summer and deal with NIV in September.

Whilst he's less active now he's still pottering around the garden, managed to have a little fire in the garden burning some rubbish during the heat wave which turned into a big fire with 5 fire engines to put it out! Thankfully only an area of the garden got burnt!

[MMG]

They take some blood from a prick on your earlobe, after warming it up with a bag of hot water you hold against your ear for a few minutes to increase your blood flow. Bit like a staple gun I always think! No big deal x

Our hospital (Stoke) use a little squirt of deep heat spray to warm the ear.

[Jojo1962]