Malcolm Mann

Also 70 year olds were all subjected to 30

odd years of involuntary passive smoking.

I had a fundoplication in 2015, I had a large hiatus hernia about the same time my IPF was noticed. I had been on Nexium a PPI for some years prior to that to control reflux. I didn’t have any obvious reflux symptoms while on Nexium.

After the fundoplication I was warned against heavy lifting, the recovery was as expected and the fundo is still…[Read more]

I find all bending over brings on my cough, emptying the dish washer, picking up stuff etc. my house has a lot of low cupboards.

If I were to design a home for IPF sufferers it would have everything above waist height.

cheers

Mal

Hi Joe

I was on Ofev and couldn’t tolerate it, they switched me to Esbriet 2 years ago. I live in Australia a (Scottish, Italian heritage) and I was fearful of the sun issues but in my case that has not been an issue. Initially I was smothered in sun block and bought long sleeved shirts etc, but the over sensitivity to the sun did not occur.

I’m…[Read more]

Hi John

Productive in the mornings, not so much later in the day, also post nasal drip again mainly in the mornings. the post morning cough is dry annoying and brought on by exercise, bending down, stress, cold air, often when I’m trying to talk on the phone.

They have been prescribed steroidal nasal sprays and antibiotics, neither produced any…[Read more]

Hi

I have had the cough for 15 odd years, well before IPF was diagnosed in 2015, the cough is still with me. Nothing seems to reduce the coughing, the medical fraternity seem to suggest I just live with it.

There are a vast range of triggers but it is probably worse in the morning.

Cheers

Mal

I wont try a long answer, for fear of rejection.

Pursed lip breathing works for me, inhale through nose, pause 7 count, exhale through pursed lips, repeat.

Cheers

Hi I’ve been on Esbriet (801 x3) for just over a year, my IPF has remained stable :-), no GI issues other than an and aversion to some foods I once loved, and an overall reduced appetite and consequent weight loss.  Sun sensitivity hasn’t been an issue. I’m still coughing and suffering fatigue and beer tastes awful.

Other than that everything in…[Read more]

Hi I’ve been on Esbriet for 10 months, no GI issues but I continue to loose weight. My appetite is greatly reduced, and sometimes I’m just not hungry.
On the positive side my PFT results have remained stable for the last year, and I’m now in the normal cohort for BMI
Cheers
Mal

Hi @Charlene-Marshall
Thanks and all the best for the new year, the packing up is progressing and the place is in total chaos. We’ll be on the ship to our new home on the 26th of Jan.
Do include Tasmania on your next island escape, there’s plenty of room in our new place, we could organise a coughing duet to welcome the new day each morning.
Cheers
Mal

HI all

This is not so much a resolution, but more a real change of life. Where we live in SE Australia in a beach village, we are on a very steep block of land, there are 40 steps between the bedroom and the back yard, and the garden is becoming unmanageable for us.

Last month we decided to sell hoping to buy in the local area, but it seems…[Read more]

Hi All progress report, I changed over from Ofev to Esbriet in May this year because of side effects with Ofev.

Recently I have had two wins.

Since switching to Esbriet I have had no stomach issues at all, and and no other debilitation side effects. A month or so back I was starting to get a rash around my nose and forehead, and I was fearing…[Read more]

Hi David

Like I said we don’t know, without the fundo I may have been much worse position. I glad I had it if only to avoid another potential cause. I read somewhere that while reflux is not a direct cause of IPF (ie there are plenty of burpers without IPF), it is present in many IPF sufferers. Before my fundo I was on a cheerful fundo forum,…[Read more]

I David I’ll put this in points as long winded response failed, again
Coughing since before 2000
PF diagnosed 2015
Reflux suspected despite me being on anti reflux meds (ppi’s) since mid 90’s.
Fundoplication in 2016, good recovery, back swimming inside a month post op.
Fundo surgeon warned against heavy exercise & dont lift heavy weights etc, or…[Read more]

@renehakkenberg @charlene-marshall

Answer is coming, the computer ate my homework 🙂

HI Michael
Yes we may have the same disease but there is a wide range of effects, in my case the movement of air in and out isn’t too bad but the diffusion (the exchange of oxygen from the lungs to the blood supply) is quite restricted.Lung function tests next week, first in 10 months.
I took the dogs out yesterday for a walk along the beach, I…[Read more]

Hi Jess

Thanks for your reply, like you my cough is a major concern, exactly as you described, and it can result in headache.

I bought a small open sports car, (1990 Mazda Miata, MX5) as motorcycle replacement therapy, 3 months before I started Esbriet. Not a good move to avoid sun exposure.

I’m now buying long sleeved t-shirts for summer, plus…[Read more]

Thanks Charlene @charlene marshall

Enjoy the ocean, swimming is good for the soul.

I have always swam and done age group competition, over the last 5 years I’ve worked out how to keep swimming with reduced lung efficiency. The main thing is I don’t kick, the legs just come along for the journey. Not kicking means you need a wet suit to maintain…[Read more]

Make that 3 times, I wrote a half a page, hit submit and got an error message “are you sure you wanted to do that?”