Susan Howitt

Hi Charlene

Thanks for the reply

Mine is also a Respironics Simply Go but only goes up to 5 lpm and is pulsed.  I have a double battery, 4 hours is its max when on 5 lpm and yes it is heavy, mine is in back pack form and I am now used to the weight, my complaint is the heat it generates in summer from the battery, in my lower back, can’t…[Read more]

Hi Charlene

What make is your POC, pulsed and continuous sound good and what lts pm can it go up to, I am on max on my pulsed and it is not enough at 5lts.

Merci bien

Hi Sita

I turn my oxygen concentrator off,  when I use my POC, yes it is pulsed and on max setting 5ltsm, even on that setting I have to stop every 200m or so, really does depend on the weather as to how far I can go before stopping, to let my blood oxygen come from about 79, (like hitting a brick wall), to 91, I use an oximeter to check…[Read more]

Hi Sita

Wonderful that you can and are willing to look after your mother.  Personally, and it is only my opinion going by what your mother can do and what I can do, it doesn’t look to me that it is time to discuss hospice care, if she can get up and down stairs without too much problem, this is good , I can’t , and I think I am far from needing…[Read more]

I am 74 on my own with four progressive lung diseases including PF, on 20 prednisone,  3lts O2 24/7, and need 6lts or more when I go out, I force myself to exercise and try and walk at least 2kms a day, don’t always make it though.

I was horrified to read that the pulmonologist was talking about hospice care, I personally, speaking as one that…[Read more]

Hi Merle

Love your name by the way.

Is your blurred vision permanent?  I ask, because mine seems to be when my blood oxygen sats drop too low, for example when out walking, I have a back pack oxygen recuperateur ( sorry can’t think of the English word) on 6lts, I  quite suddenly hit a wall  so to speak, after anything from 100ms to a km, se…[Read more]

Hi Karen

I think you have done amazingly well to get the weight off, and be on predisone, well done you. I am so lucky, on permanent prednisone since May 2018, even though I wanted to eat a scabby dog I didn’t put on any more than 2kgs and another 2kgs over lockdown, struggling to move it even the slightest. I gather that insomnia is one of…[Read more]

Hi Charlene hope you PFT’s went well.

Mine as expected showed a sharp decline in Dclo’s  probably caused by neighbour deciding to cut down a huge acreage of Christmas trees just above me and then set fire to them and went on his hols, my house disappeared under a thick smoke  cloud and the smoke penetrated everywhere inside.  Had to dose my…[Read more]

I decided against taking Esbriet or Ofev as at my age, (74 this week) and with other serious lung problems didn’t see the point of taking something that may or may not work and at best slow things down a bit, and judging by most that I have read and posts here, I don’t fancy the side effects so have opted for quality rather than quantity, that…[Read more]

I have CPFE, PF + and have been on ever increasing doses of Prednisone for the past three years, absolutely no side effects what so ever other than at the beginning where I could have eaten the neighbourhoods scabby dogs.  Go up to 60 or 80mgs if I have an exacerbation, had 2 in the last 2 months, and taper back down to my normal 20mgs, very very…[Read more]

Hi Bill Kelly

My portable goes up to 5L/min as does my home concentrator both  Phillips Respironic (France) on max for both now.    Just walking around in my house on the home concentrator I dive to 79 blood oxygen at times, weirdly it is getting into bed that brings me the lowest, something to do with lifting up my knees higher maybe.

Not sup…[Read more]

Afternoon Don  (thought I had just published this but it seems to have disappeared !!

Doesn’t seem to matter which I am on, pulsed or constant, I have both like you,  I still desaturate pretty quickly as soon as I move, often down to 79 within 300m.  Really does depend on the weather with me, cold brr, damp urgh, hot, phew, spring and au…[Read more]

I hope you can fight your cancer as well as you have fought your other condition and good luck with your hip replacement

Unfortunately for me mine are fatal, was given 1 to 3 years, now on the third year, but I do intend to fight tooth and nail to prove them wrong, I know I wont win but I will beat the prediction..  I agree good old prednisolone…[Read more]

I am on the maximum my machine will supply.  It is only when I move I need oxygen, sitting her at the computer my sats are 93. To sleep I don’t need O2 either but just to get undressed and into bed I can go down to 75, no one can explain this. This has all happened in two years.

I am greedy in the fact that I have 4 advancing lung conditions at…[Read more]

I am on permanent steroids and have been for 2 years, not a high dose 10mgs but if I have an infection it has been increased to 40mgs for two weeks.

I know steroids and the Corona virus don’t mix, think being right out in the country I am fairly safe but am under no illusions if I get the virus I am a goner.

I have been able to get my walking up…[Read more]

I unfortunately have to go to the supermarket, no deliveries here.  I have hand sanitizer with me at all times, have ordered a visor but it is some where in the post, and has been for quite some time. Can’t use a mask as I really can’t breathe in them and of course a nasal cannula stops any form of good seal.  The joy of living out in the c…[Read more]

Thanks Terry

Yes it is lovely, I live in mini mountains, wonderful clean air, when folk aren’t having bonfires!! but these same mini mountains really stop me from getting out on foot, so I have to drive, can’t even go down into my basement, well can go down but can hardly get up again even on oxygen.

The goat patrol sounds wonderful what a…[Read more]

Oh Terry, what a shame that eh one park you wanted to go to has completely closed.

I am very lucky I live in a national park here, no where near as magnificent as yours but still beautiful, at the moment there are fields and fields of wild daffodils and with this lockdown the Parisians cannot come down and trample everything down in their greed…[Read more]

Hi Terry

Re putting fuel in your tank, I have to do it myself,  hand sanitizer is like hens teeth, not to be found so  I carry around in a zip lock bag, and fresh every time I go out, two or three pieces of kitchen paper towel which I have dampened with a disinfectant product, 1 sheet as I pick up the pump, clean hands when finished, one sheets w…[Read more]

Hi Wendy

Just been announced that our lockdown (very strict) has been extended for another two months .  Luckily my oxygen 24/7 now,  is a concentrator run by electricity,  or a battery back pack. Only thing I will have to do is save my pipes, sterilize them more I suppose they wont go too stiff as the weather is warming up

Keep safe.