Susan Howitt

Hi Mark, Not ready to just sit and exercise yet, just mowed, ride on mower, OK yes so sitting down lol, my land, 2,000m2, and like every where here it is no where near flat, very very steep gradients in parts, can’t wear back pack, too bumpy, so have to just wear a mask, do about half an hour  then stop for a top up of oxygen, get down to about…[Read more]

Hi Mal

I do sing/hum in the car when I haven’t got my oxygen on, Phil Collins fan, as you say, the rhythm keeps you focused on breathing properly.  I used to walk my dogs 10kms most days,   now struggling on the slightest incline of which there are many here in the mountains, nearest shops 12 kms away.  Love this area but for some one with seve…[Read more]

Hi Mark

I have one of those tanks, it is for emergency use in case of power cuts.  My static concentrator is continuous flow and would go up to 5l pm , not on that yet but am on maximum 5l pm and struggling on the back pack  I suppose if need be I could get machines that go higher, don’t want to need to go higher after only a couple of m…[Read more]

Hi Mark

What are E tanks please.   I have a tank but not sure if it is an E tank, it goes up to 6l pm.

I have 2 concentrators one static and the back pack plus a tank in case of power cuts.

Yes 6 minute walk test, at the main hospital it is in round a hall, easy, at the hospital where I was sent this May it included stairs, 2 flights, there, I failed miserably whereas in the big hospital, on the flat, I sailed through. !! I will also have lung…[Read more]

Hi Mark

5l is the max for my back pack, I have only been on oxygen since this May !!!!!  I don’t use it at night as all my readings come back at 97 overnight but as soon as I start moving I drop quickly, even getting bathed and dressed has me at 82. My next appointment with the pulmonologist is on August the 20th, 3 difference RV’s all on the…[Read more]

Hi Mark

Thanks for the encouragement, I know I have to be very careful re sats but had no idea I was plunging that low until I hit *the wall* last Saturday, very very scary.  I among other things have internal version of systemic scleroderma and only one kidney so every thing is trying to work against me  Been a mouth breather all my life f…[Read more]

Hi Mal

I wholeheartedly agree with the singing thing, I have a CD, on repeat, in my car and I hum to the tunes and it really does help with the breathing, I hate wearing my oxygen in the car so breathing  to the rhythm is extremely helpful, as I have a tendency to mouth breathe and too fast, singing/humming make me breathe from the right places…[Read more]

Hi Piet

High doses of Vit D are definitely beneficial, I take it once a month and instantly feel more capable.

I was  diagnosed in May 2018 and given 2 to 3 years !! want to prove them wrong. Because I haven’t got IPF but PF very different reactions so I believe,  plus others,  there are no tablets that would be of any advantage, in fact to ta…[Read more]

Was going to get it from I-Herb eu

Thanks Steve

When I first looked it up in French, silly me should have gone straight to English, it said it was cumin, looking it up in English it is as you say, I think I will try it as I have absolutely nothing to lose and everything to gain, thanks again.

Hi Steve

Thank for your reply. I will be 73 tomorrow, yay made another year. Got real diagnosis last year, in May, after five years of being told I was **asthmatic**. Gone down hill fairly fast since diagnosis and yes I know I have got a fight on my hands.  Can’t give up as I have 2 rescue dogs who are my world.

I have industrial Pulmonary F…[Read more]

Hi Wendy,

That is all we can do, as much as we can,  doesn’t pay to work til exhausted, can do so much less, so the idea is to pace oneself, I am widowed so almost alone in a foreign country but my neighbours are such treasures, I have my nearest neighbour (think she has OCD) she comes in every week and cleans my shower for me, can’t do the…[Read more]

You are quite right we need to exercise but yes so exhausting. A lot of the lung diseases have as a nasty addition, utter exhaustion. Here there is a heat wave at the moment and I just can’t summon up the energy to do anything as besides the heat it is hay making time and the pollen and dust are making life impossible.  I now can’t bend so have…[Read more]

Hi Charlene

One of my conditions causes a CO2 build up so have to do a fair bit of pursed lip breathing out for 7. Haven’t got a lot of lung capacity left, think I am now on 30/40% .  I do have an oximeter and used it fairly regularly to check myself after I turned down the pulsed machine, most of the time I am on the static machine with nose…[Read more]

Linda Waldschmidt

Only just seen your question re pain in the middle of the chest.  I have this almost permanently on breathing in, some days are worse than other but I cannot put a cause to this though today is warm 25° and high pollen count and the pain is much more noticeable.

Has any one had to reduce their oxygen intake?  My portable oxygen concentrator was set by my doctors orders at 5lts (pulsed) the max for my machine,  tolerated that for a month but felt *blown up,* is the only way I can describe it, so turned down to three, not enough, went back up a bit so am now at 4lts. Oxygen people came the other day to t…[Read more]

Unfortunately the answer is yes, and wish I knew the answer to your second question

Sorry can’t be of much help as I have CPFE and my readings are very different to some one with IPF and there is no tested drug treatment for CPFE my last CT scan showed very little advance of my diseases , however I did have again an exacerbation beginning of May, same as last year, no idea what causes these.

I am now on oxygen because of…[Read more]

I unfortunately cannot get pure CBD oil here as I cannot get it through (French) customs, the sort I have got  has had all the *useful* ingredients removed and has done absolutely nothing for me.