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Susan Howitt replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 2 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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.
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago
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]
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Susan Howitt replied to the topic Dizziness and IPF in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 4 months ago
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]
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Susan Howitt replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 4 months ago
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
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago
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]
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Susan Howitt replied to the topic Oxygen in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago
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]
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Susan Howitt replied to the topic all us old folks with radiation induced pulmonary fibrosis???? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 5 months ago
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.
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Susan Howitt replied to the topic all us old folks with radiation induced pulmonary fibrosis???? in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 5 months ago
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.
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Susan Howitt replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months ago
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]
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