Steve Dragoo

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]

Here are my answers concerning my Ofev experience:

1. I started Ofev about 6 months after my October 2020 diagnosis.

2. I was not told at that time about the severely of my IPF. I had a surgical biopsy soon after and learned I did indeed have IPF showing mild to moderate progression.

3. Choosing Ofev was my decision as the Doc indicated…[Read more]

Hello Michael

Could you please let me know the herbs you are using>

I also have the sneezing and then nose bleeds, my ENT doctor suggested Neli Med and make sure it had aloe in it, no more nose bleeds but still get some sneezing. He also told me to cut the cannela that goes into the nose back to take pressure of the area where nose bleeds can be started.

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 @steve-dragoo ,

Not a problem at all, we just wanted to post that reminder to ensure emails aren’t being left publicly, most importantly to protect our members’ privacy. In a PM/DM is totally fine!

Hope you’re doing as well as possible! think of you often.
Char.

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]

Saw PF on a x-ray reminded me when I was 10 years old and got home from school and my older brother who was 18 at the time was eating a late lunch of chicken noodle soup and reading a magazine. Hw asked me anything new at school and I said yes, we were doing drills for a nuclear weapons explosions and we get under our school desks, he showed me…[Read more]

Talk to your Pulmonologist, they can refer you, Matrix is out of plant city and is a provider.

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]