Bill Mattila

Hi Scott,

Thank you for your kind words, and I’m thrilled this forum has been helpful to you… it sure has been a labour of love and wouldn’t be possible without the vulnerability and contributions of everyone here. I think the patient-to-patient sharing is what makes this site so special, of course I am bias though ;). I’m also thrilled to hear…[Read more]

Agreed Scott, the Pulmonary Fibrosis Foundation’s website is a wealth of knowledge about this disease. I encourage folks to use it as one of their primary (if not their primary) source of information about IPF. Take care!

Thank you all for sharing your insights in response to @Stella ‘s question about depression. Unfortunately, I think this is a very common “side effect” of IPF, especially with the way many doctors diagnose us and inform us of prognosis’ that are outdated (ie. 3-5 years to live). I’m glad conversations are happening across patient platforms on how…[Read more]

I couldn’t agree more Diane, thanks for sharing this! Pulmonary rehabilitation has helped me tremendously over the years as well and I wish it was recommended more.

Hi Gavin:

I am so sorry you’re having this experience! I always say unless someone has experienced true breathlessness, they have no idea how terrifying it is and I’m very sorry the doctors won’t listen to you by the sounds of it. Chalking it up to anxiety must be so infuriating! It sounds like you might need to “prove” your hemodynamics (ie.…[Read more]

Hi @canalblue

Thanks for your post. I’m not sure if you’re thinking of Steven Baum who is the MD on our site and relatively active with sharing some relevant and credible research and resources for IPF? If so, he doesn’t have IPF but does treat patients with it. He has another rare disease but it isn’t IPF, just so you have that…[Read more]

Thanks John! This website is indeed the most credible site to find IPF studies or clinical trials, many of the others are not vetted for credibility, however, this one is. Thanks for sharing for our members!
Char.

Hi @vangie

thanks for sharing a bit about your story and upcoming snorkelling adventures – I love to snorkel, it’s one of my favourite travel-related activities but I admit, it is getting a lot harder. A couple of tips that have made it a little easier for me include:
1. Keep your oxygen nearby (ie. on the boat you’re snorkelling from or on the…[Read more]

Thanks for your comment John. I also have the Phillips Respironics SimplyGO POC and my only compliant is that it is heavy! I also had to get a backpack, which has made it a lot more manageable and its the POC that works best for me, hands down. Might be worth exploring as well @fmarzetta?

Hello everyone,
I have had ILD for 5 years now. I had an endoscopy 3 years ago when my stomach was really acting up (starting on the Ofev!) and a hiatal hernia was diagnosed. My GI doctor said that about 65% of people over the age of 55 develop this type of hernia…so it is extremely common and she did not think (in my case anyway) that it had…[Read more]

Hi Roger,

Does your local transplant hospital (or the nearest one) have a support group, either virtual or in-person? Sometimes they have disease-specific groups or even age-specific which I find a lot more relevant than some of the generic PF groups online. Just a thought if you haven’t checked there 🙂
Char.

Hi @mehta & @msherbert

Thank you both for starting this conversation! Sadly I agree, there are a lot of environmental and occupational hazards that people aren’t aware of that can cause damage to the lungs. I’ve never heard of home kitchen fumes being problematic but it likely depends on what you’re cooking. I know for me, even if I accidentally…[Read more]