Dear Joanna:

Huge and heartfelt ♥congratulations to your father, you, and the family and friends who are celebrating your father’s transplant. It is indeed a miracle! Your father is now a pioneer. Everything he experiences will help the medical team treating both PF and post-transplant patients learn so much. My boyfriend just had his…

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Hi everyone.

Maurice, if it doesn’t harm your mother, it’s worth trying the dextromethorphan and I hope it helps her.

On another tangent, and not to be pedantic, I think we should use the words “cure” and “amelioration” with caution. My understanding as someone diagnosed with PF in 2013 is that once the lung tissue is scarred it cannot…

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Hi Beverly.

As others said, you have to check with the health plan for the province in which your mother lives regarding coverage for Ofev. I would be shocked if it wasn’t covered. Perhaps her pulmonologist meant to say “it would cost $10,00 per month if you had to pay for it yourself”, rather than meaning she would have to pay for it…

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I was diagnosed with auto-immune PF in April, 2013 at age 58, and it was very aggressive. My respirologist put me on 50mg of Prednisone immediately. Within two weeks the dose was dropped to 30, and a week later to 20mg which I stayed on for three years, then slowly weaned off by June, 2017. I had two infusions of Rituximab (same thing…

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Congratulations on the success of your hip replacement, Dave! It’s wonderful that your transplant doctor came up with a plan that worked for you.

Hi Malcolm.

I was diagnosed with PF from an autoimmune disease (which is still not identified) back in April, 2013. Every day I cough and have to clear my throat frequently. I hate it, but am also aware that others might find it annoying and a bit alarming (esp. since COVID!). I live in a concrete-construction apartment building, and so far…

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Hi Harold.

Just for the sake of others who might want to read the stories, here’s the link:

https://pulmonaryfibrosisnews.com/make-every-breath-count-samuel-kirton/

If you have found another link please let us know.

Regards,

Patricia

My “credentials” re PF: I was diagnosed with autoimmune PF in 2013, and my boyfriend had a lung transplant four years ago. Something he finds helps enormously with the cough that was interrupting his sleep is not lying completely flat in bed. He has a remote-controlled mattress and raises the head just 3 – 4″. A less pricey option is a…

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Hot moist air doesn’t agree with me. It makes me feel suffocated. Occasionally when I’m washing pots and pans I have to step back while running the hot water to fill the sink. Some members of my PF Support Group feel better when the air is humid, others don’t. I cough a lot from post-nasal drip so take antihistamines year-round. The…

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I definitely wear a mask when I’m in close quarters with others in grocery stores, the weight room at the gym, etc. I don’t wear a mask when I’m walking on the track at the gym because there aren’t many people using it when I’m there. When out for a meal at friends’ homes or a restaurant, or entertaining at home (always groups of no more than…

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Hi again, Gavin.

You might also want to look up

Copy of Home

which is the UK organization.  The US site is extremely helpful too:  https://www.pulmonaryfibrosis.org/.

Best wishes!  – Pat

Gavin, have you looked for pulmonary fibrosis support groups in your area?  I have found being in the company (in person or via Zoom) of others who are living with PF to be extremely helpful.  Plus we usually have a speaker who understands and treats some aspect of PF such as exercise programs, physiotherapy focused on breathing, eating well,… Read more

Hi Allan.  Such a pity that something you enjoy (singing) plus something that we need in our everyday life (speaking) is affected so much.  I took a short course in voice acting a few years ago.  The instructor said that eating a Granny Smith (or probably any) apply seemed to help people avoid clearing their throat or coughing.  Just a piece… Read more

Doug, just click on the words in blue in Charlene’s post (“important role in lung fibrosis”) and it will take you to the article.

– Patricia

Our support group asked the organizer to have someone come in to speak to us about what it is like to die from PF.  We were fortunate to have the head of palliative care in our province (Alberta) address us.  It was one of the best-attended meetings we’ve ever had.  Despite the fact that talking about death is difficult and uncomfortable for… Read more

I would have replied sooner but just now saw your post. When I was first diagnosed with PF my nostrils were over half full of dry scabs which only added to the stress of finding it hard to breathe. My doctor sent me to a wound clinic where the nurse said (off the record) that I could pick off the scabs, then smear Vaseline in my… Read more

For the Canadians like me in the crowd, here’s a link:

https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html

Stay well, everyone, and Merry Christmas!

Patricia

 

Hi Ron.

Funny you mentioned scrapes and cuts becoming infected.  I haven’t had any infections, BUT I’ve found that wounds heal much more slowly in the last seven years, including the last three since I’ve been off all meds.

I love dairy products.  In addition to drinking lots of milk, eating cheese (and taking a calcium supplement while I was… Read more

Immediately upon diagnosis of PF from an as-yet-unidentified autoimmune disease in April, 2013 I was put on 50mg/day.  I read the information sheet and when I saw that weight gain is a typical side-effect, I decided to pay strict attention to what I ate.  “Mindful” eating really helped me.  If I was out for a meal I would eat half of what was… Read more