Susan Howitt

I am not able to interpret my DLCO and FEV numbers like the rest of you because here it seems to be totally different,  here being France for the FEV I have worked out I fluctuate between 47 and 43 %  so pretty good I think

For the DLCO not so sure but there are 5 different values and the first LFT on the 21 September 2018 there were three n…[Read more]

Looked up palliative care here and there is none, nor hospice care, far too out in the sticks and to go into a city like Paris would be the end of me because of the pollution, and would drive me insane lol.  Normally health care here is excellent if you don’t have something out of the norm, I do and have done loads of research but get poopooed…[Read more]

I get regular leg cramps but it is mainly the muscles over my ribs that going into spasms at the drop of a hat.   Odd thing Judy that is I am on oxygen and have been for 5 months now and the cramps have not relented one bit.  So happy for you that you have found oxygen helps you be more active, been not a lot of help for me, my combined co…[Read more]

Hi Nan

Thanks for the encouragement, had appointment yesterday, 5am get up as hospital is 1 1/2 hours away.  Rehab fella had never heard of what I have got but said all lung problems are the same and respond in the same way !!!!!  I have actually got a bit of a get out, proffs secretary forgot to make an appointments for the next stage of r…[Read more]

Thank you Nan

Think this week if I didn’t have my dogs I might have just stopped fighting, daughter back in the UK for a week. People tell me I know my own body, yes I do but here you don’t argue with the medical profession, I do, this is because since a medical mistake by a careless dr , nearly ended my husbands life 20 years ago, I research…[Read more]

Hi every one.  Saw the pulmonologist on Wednesday, to say I was shocked by what he said is an understatement, I couldn’t even argue, just wanted out, utterly defeated and depressed.  I don’t think he even looked at my notes. He said he is arranging a three times a week sessions of *heavy* exercise as I don’t do any and with my lung function at n…[Read more]

Hi Marsha

You’re so sweet, thank you

Our stories do have a familiar ring to them. I was also speechless I couldn’t even protest, also just wanted to run, never had depression before, it arrived yesterday, almost immediately after that disaster of an appointment, cried all night, not at all like me, not a nice feeling. I also was so shocked that…[Read more]

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.