Susan Howitt

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

H Randy

Sorry to hear you have a catalogue of complaints like me, doesn’t make life easy.

Can imagine how having two concentrators running at one makes a room unbearable beside the high electric bills, happy to read that you have managed to get back down to one and are hoping to do yard work in the Spring, brilliant, hope it comes to fruition. I…[Read more]

Hi Reshma

Sorry have no advice.  I have to use Omeprazole once a day because if I don’t eating is a very unpleasant experience.  I eat every four hours day and night, mostly soups so that I can sip and nothing big *lands* in my stomach. I cannot eat anything spicy, shame I used to love a good curry, nothing too sweet either and I never add s…[Read more]

Hi Reshma,

I have severely swollen ankles and feet at times, always fairly swollen, if I drink too much water they get a lot worse, so it is a fine balance between drinking enough but not too much, also I sometimes put my feet up on the wall (when in bed) for half an hour, higher than the rest of my body to help drain the fluid as I had my leg…[Read more]

Hi

I used to have horrific dizzy spells, for instance if I was shopping and got to the check out and stood still, spells were always when I stood still after a bit of an effort, I would have to grab something to steady myself. I am now on liquid O2, brr so cold on the back, instead of the O2 (oh lor can’t think of the English name for those…[Read more]

Hi Brian

Great you have had your vaccine.

Hope you manage to get out here in May. Wouldn’t want to be anywhere else in the world than here.

cordialement  Sue

Hi Reshma

Glad to know that you now have the big cylinders  and two little ones like me, great help.

I find Vicks vapour rub very helpful for the coughing at night, I rub it on my upper chest and up my neck,  haven’t yet used it by day, maybe a little under her nose might help too, I find it helps with the tightness in my upper chest and eases t…[Read more]

Glad to see you back Reshma

I am now on liquid O2 big cylinder that supply 6 lts per min, (3 of them) my O2 providers are bring, this Tuesday a Y connection so that I can have two cylinders joined together to go higher, up to 12lts if necessary. 10metre supple tubing so I can get about the house, I up or down the O2 as needed depending if I am at…[Read more]

Yup Jofac, all we can do is follow medical advice, though I do a lot of research as my combination of lung problems is very rare.

I wish your wife well.

Hi Jofac

I think Anne’s PF might have been caused by chemotherapy a known cause for PF. A right B…. that curing one disease has the potential to cause another.  But yes you are right in your thinking too, we have no idea of the harmful substances in our food nowadays.

Here (France) if you live in fairly isolated communities you haven’t got a chance of getting vaccinated until way down the line. All health workers come first, and so they should, then care homes and the like, then city folk with health problems, then city folk.  I have been told that I am not suitable for the vaccine because I have allergies…[Read more]