Susan Howitt

Hi Sam

I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day)  to be able to rest on…[Read more]

I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose.  I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.

I have exactly the opposite problem, can’t stay warm, even with these last few days being very warm, 24° I am here in thick jumper and fluffy blanket with hot water bottle !!!  Not on any anti-fibrotic

Sorry Wendy, I just sleep through them too. I have found that if I eat something, usually a half cup of a substantial soup, I sleep deeper and better and seem to get through the episode faster.  Sorry can’t be of more help

stay safe   Sue

On oxygen I have a bubbler so until I went on really high out put  never had a problem.  Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I k…[Read more]

Hi Marianne

My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to get…[Read more]

Hi Bill

Yes I am trying to get the Moderna vaccine, seems to be the safest one for me.  Can’t even get a Pfizer jab here even if I wanted it !!!  Live out in the sticks and in my county there were only 800 jabs (Pfizer available) and all went to Drs and frontline workers.  Being in the sticks I am safer, I hope, than most people.

Hi Bob

Dear Bob

I had 2 Inogen  concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in these…[Read more]

Hi Marianne

Glad you got your Covid vaccine, even though I am classed a critically vulnerable I haven’t yet been able to get an appointment for the vaccine, I am too scared to take the Pfizer vaccine, my friends husband had the reaction I dread the most, he was unable to breathe easily for about 1/4 of an hour during the night following his…[Read more]

Hi Marianne

I am English but live permanently in Burgundy France.   I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6,  I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a ba…[Read more]

Hello Marianne

Have you got CPFE?    Diagnosed in 2014 and on O2 for the last three years. I started off on a back pack oxygen recouperater (sorry can’t think of the English word)  they go up to a maximum of 3litres per minute but they can be plugged in to the electric current anywhere to recharge, including the car.  The problem with them is th…[Read more]

Each country seems to have different systems

I have huge cylinders that I fill my back pack from,and use for my O2 needs,  tried to find the literage but not anywhere visible, I use one and a 1/4 of these cylinders per week for my O2    (weekly delivery)

Wish my back pack lasted all day because of my O2 levels  it only lasts 1 and a 1/2 hou…[Read more]

Dear Joe

Just one warning about concentrators, as you are in the UK, they do not have filters that deal with Covid, so either use your bottled O2 when out in any sort of company or get a liquid O2 back pack, that involves having a huge cylinder (I have three + two small ones) in your home to use around the house with 10 metre hose  and also…[Read more]

Hi Bob

I am a mouth breather too and have had to train myself to nose breathe. Never even considered face mask. I have found that if I lie on one side or the other that side nostril tends to bung up so also have had to train my self to sleep on my back, in a half sitting up position. Don’t need high concentrations of O2 to sleep 3 or 4 litres but…[Read more]

Hi Floyd

Like you I am at stage 4, it is it happening very rapidly, in the last 2 months I have doubled my O2 needs, cannot move without dropping below 69 blood O2 even on the highest number my machines go up to, being supplied with a Y joint next Tuesday to join my 2 cylinders together, atm I often have to have two sets of prongs up my nose,…[Read more]

Sorry to say that any virus germ etc is sucked directly into your lungs, so mask no good at all.  A  bottle of liquid O2 is the only answer.

Take care   Sue

Hi Bill

No I wasn’t suggesting that money was a problem for you, just stating how lucky I was not to have any worries at all on that score over here.  I know it can be with some insurances or lack there of, can be critical for  others, reading about the costs of some vital medications over there, if accurately reported.

Hi Bill

Lucky to be here (France) where I pay absolutely nothing for my oxygen, don’t even have to have an insurance, in fact as some one with a life threatening disease I don’t pay a penny for any care, cancer and heart disease also come under this heading, it is all paid for by the governments health care system. Have to pay for the odd…[Read more]

When I was able to be more active I wore my back pack to do everything, living where I do pulling a trolley would have been a right pain and very restricting and ex broken collar bone made it out of the question to carry a shoulder version, you soon get used to the weight and after a while I hardly noticed it, mine with a double battery was 10 kgs…[Read more]

Hi John,

Doesn’t seem to be a formula as to when people need to go on O2. Apparently some can go for years and others go down hill faster.

Hopefully you are one of the former

Cordialement   Sue