Susan Howitt

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]

Hi Anne

I haven’t got radiation PF but chemical induced PF + 2 other lung diseases provoked by said chemicals and emphysema from me smoking, my condition is getting worse rapidly now, have recently jumped from 2ltspm to 6 and after two months that is now not enough.  Next Tuesday I will have a Y connection to hook me up to 2 big tanks at once,…[Read more]

James, you are so right about Symbicourt, it nearly killed me on the second dose (night, first day time dose was bad enough), I cramped up all over and couldn’t move, couldn’t breathe properly, if I could have got to the telephone, by my bed, I would have rung for help it was that bad. I was given it when at the very beginning they thought I had…[Read more]

Hi Rod

Try a wedge pillow for sleeping,  certainly helps alleviate the cough, though now I have had to get my son in law to make a wedge type frame to go under my mattress as I need to have my head even higher to be able to breathe and sleep. Also you could, if you sleep alone, put bricks under the feet of the bed head to raise it up.

I…[Read more]

Afternoon Charlene

Very disappointed, the first back pack was calibrated wrong, no wonder I was feeling so darn good and walked 3kms with 4 stops to get my levels back up, I now know it was delivering me about 8/9 ltrs per minute,  new back pack delivers 6 lts  and I still can’t walk the dogs as the track is very slightly undulating and that is t…[Read more]

Hi Vishal

For my diseases, CPFE, bronchodilators are dangerous so it is said

quote  *It is important to point out that the presence of emphysema and abnormal changes in pulmonary vascular bed in these patients may be associated with an imbalance in the ventilation/perfusion ratio (V/Q), as hypoxic vasoconstriction is one of the main mechanisms…[Read more]

Hi Taleena (lovely name by the way)

I read that far too many ordinary doctors put people on Prednisone at high doses and don’t take them off, this was my case as well, 40 mgs,  but as I hate taking chemicals (the  breathed in  ones caused my lungs diseases) I was quick to wean down when the inflammation calmed down and the pulmonologist co…[Read more]

You must have been on a pretty high dose all that time to get the moon face and put on so much weight.  High doses are usually short term because of a flare up and then slowly weaned down to an acceptable level of anything from 2 1/2 to 10 mgs if needed on a permanent basis.  I have no side effects on 10mg per day other than hunger which I c…[Read more]

Thank you Mark for your very kind words

I am on 10mgs and ever since I started on Prednisone I could eat a scabby dog, been on it for 3 years and only

just started to lose weight.

Oh yes Maka I really think people do think we are infectious even with nasal prongs and an oxygen tank.  I once answered some one (before Covid) that told me to stop spreading my germs, that * My problem was 100% fatal and 100% non infectious and thank you for your concern* made them as uncomfortable as I had felt, not nice I know but then…[Read more]

I have a pretty good immune system and always have had, even with my lung diseases each flare up has been caused by outside influences, i.e smoke, pollen (I am allergic to pine pollen and live surrounded by such trees !!) I rarely get colds, if I do it is just the sniffles for a couple of days.  I try to eat well, used to be able to walk with my…[Read more]

Reading this I was lucky, MRI scan showed up my Fibrosis, Emphysema and Bronchiectasis, ground glass opacities and TWILS so no invasive investigations, I was immediately offered Esbriet or Orfev which I refused, didn’t fancy the side effects and also as I had SSs as well as the other three lung problems I personally felt that no tablet was going…[Read more]