Jofac O'Handlin

Hi @Christie-patient,
My wife, English, had and still has difficulty with local dielect verse, so I can imagine your struggle with Scottish accents.
Here is a piece of Brown’s work. Something we were obliged to learn ‘off by heart’ as 10 year old primary school pupils. Hope you all enjoy, get somethkng from it. Joe

From the narrative poem…[Read more]

Hi Christie,
You interest in poetry strikes a chord with me. However, I will add a couple of personal limitations. Whilst I am reasonably articulate, I cannot write reasonable verse. I have ideas but have a blockage in constructing verse or poetry.
I do not identify with clever poetry, i.e. that writing which is gramatically, or word wise clever.…[Read more]

Thanks Chris for the link.
I zam not the best at deciphering statistics! But do I get the comparason that those on treatment effectively maintained capacity, sort of + or – a bit about their base lines? Those on placebos significantly continued their decline in FVC etcbelos their base lines?
Thanks,
Joe

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible trigger.…[Read more]

Hi Chris, Your post is most interesting. I feel almost certain of the gene mutation / aberation as my sister 11 years my senior died of the complaint at the age of 85. Possibly our grand father on my mothers side died prematurely aged 41 of an undefined lung condition.
An article that I read referred to the MUC5B mutation as a possible trigger.…[Read more]

Hi All again,
I apologise if my last message sounded rather morbid. It is a record of my experience to date.
One wonders about our vulnerability, what caused this disease in us? With my sister having it, we were 4 siblings, just 2 of us got it. Was it an inherited mutation that gave us a predisposition, maybe the MUC5B gene mutation? History,…[Read more]

Hi All, I am not sure that I should add to the contributions already submitted. However, here goes:-
1. I suffer from IPF diagnosed in 2013 now over 9 years. An early diagnosis following a bout of pneumonia caused by a virus that both my wife and I suffered following a visit to a theatre! Incubation chamber!
2. My sister 11, years my senior, was a…[Read more]

Hi Wesley,
Sorry, but it is necessary to be a bit of a pedant. Time and date, next Thursday is not good enough.
To be constructive, could a text summary be produced of the recommendations that may have surfaced.
As a long term sufferer, 9+ years, and one who is in the end game, I would be interested.
Keep exercising as long as possible, eat…[Read more]

Gene variations or mutations involved in IPF.
In the UK when one signs up to permit any samples taken to be used in research, you fail to understand that you will not get any personalised feed back. The only information received will be that pertinant to your treatment. So, monitoring the progression, and the prescribing (in my case one of the 2)…[Read more]

Hi Steve,This is one site referring to piceatannol:—
https://pubs.rsc.org/en/content/articlelanding/2016/fo/c6fo00685j
It suggests that it has greater potency than reversatrol. BUT.??
Regards to all,
Joe

Hi Steve,
It seems that we are at about the same stage. My O2 sats are about 92 – 94 at rest (creeping downward). Likewise, puffing at the top of the stairs. Have concentrators in living room and bedroom. Use as and when. Portable O2, which my wife carrys for use uphill, or against the wind. We go out for 20 to 40 mins EVERY night, except windy /…[Read more]

Hi All, The message to eat healthily is loud and clear and one which I have stuck to, despite the advice to avoid fibre to compensate for OFEV effects on the digestive system. I also take a cocktail of vitamins and nutriants. Keeping on exercising is vital, only walking slowly now.
People have advised taking various alternative therapies. I am…[Read more]

Hi Nina,
I will say hello.
IPF has been described as a cruel complaint. The progressive nature slowly or quickly robbing one of your physical abilities. We all, on this site, probably wonder what caused the investigation into your health that revealed your diagnosis. Mine was a slow recovery from a bout of pneumonia (that affected my wife as…[Read more]

Hi Natalie, I agree about exercise. My feeling is to try (against the odds) to keep going. A couple of years ago I used to talk about walking up the local headland from the sea side promenade. NOW! I can do it in very short bits with several rest stops, even with my wife pushing, hand in the middle of my back! Result, we do not do the headland…[Read more]

Hi Natalie, and other thread contributors.
I live in the Isle of Man, centre of the Irish Sea.
Because of its central location it was an ideal site for a Hyperbaric Chamber. In the ‘good old days’ this was a government facility to provide urgent support to the maritme industry. When this was deemed unnecessary the local leisure industry, and…[Read more]

Hi Jim,

You ask most pertinent questions. It is accepted that there no cure for our complaint, and the extension to our life by taking either of the two treatments against the side effects is questionable.

I started a thread asking for experience of the transfer from OFEV (nintedanib) to Esbriet (Pirfenidone). I received many replies indicating…[Read more]

Dear Jacqui,

I anticipate that you will get lots of support on this site, much of it with better knowledge than I can offer.

First, I would suggest getting medical advice for the pain / discomfort that your Mom is experiencing. It is, I believe, known that IPF causes stress on the right ventricle of the heart.  Does this cause chest…[Read more]

Hello Charlene,

A quick note, I was diagnosed with IPF August 2013, my sister in 2015. But our daughter diagnosed with sarcoidosis, following the birth of her two children, about 2012, aged 37.

As I have said on previous threads, I would like to know more about familial / gene links. My daughter ‘is my daughter’, she inherited my curly ears (as…[Read more]