CPAP and so on

[Veem]

Not a good day. When the worst storm in many years was about to hit Europe, I had to be up early to drive to the hospital for 8.15 to do an ‘under stress’ test for my lung capacity and oxygen levels. I set off in the dark (having not driven in the dark for around 7 years, post cataract ops) and hit a few heavy downpours. Scary. I was on the lookout for fallen trees and vehicles halted by the conditions, but arrived at the clinic in time. With Hi Tech equipment strapped to my wrist I set off to do 6 minutes walking as briskly as I could whilst a staff member monitored constantly on a receiver. After what seemed a quick 6 minutes, she stopped me and asked me to sit down. Then Dr Istria appeared to tell me the test had been a ‘catastrophe’ because I was clearly short of oxygen and he had stopped the test early. So I had to do it again, this time connected to an ambulatory oxygen cylinder. Better, but not great.

End result, this afternoon a technician came to set me up with permanent oxygen paraphernalia. A rather loud oxygen concentrating machine which takes the ambient air, removes the oxygen and feeds it to me via a nasal tube. I have in effect a long flexible tube which allows me to roam anywhere within the house within about 15m. I can make it to the fridge, but not the front door. I feel like a gypsy cob tethered on a common.

I’m not allowed to cook when wearing it because of the high flammability of oxygen.
At night, I have to disconnect myself from the large noisy machine and attach myself to the overnight CPAP machine into which I have to plug the tube from the large noisy machine so as well as pressurised air via a mask, I’ll receive additional oxygen.

Then, if I want to go out, I have an ambulatory pack. It’s a battery operated machine which is in a bag with a shoulder strap. It weighs about 4 kg, so not inconsiderable. Batteries (there are two) only last 3 hours, which rather limits the time I can be away from a power point or the big noisy machine.
In case of power cuts, I have a large oxygen cylinder (lasts about 16 hours) that I plug myself into and then have to stay close to it ……… and ring for replacement if it looks as though the power cut might stretch into days.

It’s a lot to take in.

Sorry for the very long post. Has anyone here had a similar experience?

[Pathca]

I believe you have said before you have COPD ,COPD management is very complex and it sounds like you have had some decent care ,
My auntie in the Uk had a condenser for a good few years and managed well (apart from when the nursing home closed the door on the tubing but that’s another story )
As well as care when cooking be careful with skin products,lip balms ointment etc containing petroleum products ie Vaseline as it can cause burns

[Veem]

Thank you Pathca.
The technician warned me of the dangers of using skin products. I am about to try the 4th mask - which is material based as I developed extreme allergic reactions to the silicon in the first 3. The selfie I took of my poor face after just 3 nights is horrific. But I do have very sensitive skin so shall have to ask at the pharmacy for recommendations for emollients/creams I can use as I gather oxygen can increase the possibility of skin dryness.

[Pathca]

Watch your ears and your nose as nasal cannula can make them sore

[L Austin France]

Sorry to hear of your problems V. Must be a right pain carting that stuff about.
Guess it's gonna ruin the poo picking.

[Blaze]

Goodness, that sounds awful, Veem. Thank goodness you are being well looked after.
There are precautions to take with oxygen but it sounds as if you've been well briefed. The pharmacy should be able to recommend some sort of non-greasy cream to sooth the skin. It's important to keep the skin moist - they may well suggest products by Avène, La Roche Posay and Uriage which are excellent. I have used them for a skin reaction that I've started getting at this time of year and they work well.
I hope the oxygen makes you more comfortable.

[MAD87]

Golly, what a trial for you. Bon courage Veem.

[Veem]

Thanks for the words of support and encouragement.
I slept with the new mask last night for a little over 10 hours. I hadn't realised I was so tired!
Today I shall visit the pharmacy for advice on creams, lip salves etc.

LAF - I stopped pping back in March when Biggles wasn't well and couldn't empty the pooh trailer onto the muck heap. That part of the routine had become too much for me. So we now pay a young Brit to come to do it every other day. I actually miss it though. I miss having the regular routine of watching the boys doing their thing, checking the state of the fencing and condition of the grass and generally keeping an eye open for small daily changes like the appearance of poisonous plants, unusual holes in the ground or a sudden surge in mushrooms.

[Lori]

That all sounds very serious Veem. I hope it gives you some relief and helps you rest better.