Glenda Rouland

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very common “side effect” of IPF, especially with the way many doctors diagnose us and inform us of prognosis’ that are outdated (ie. 3-5 years to live).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]

@cecilzlotnick

Hi Cecil,

Not sure if anyone answered you.  I have been taking Serrapeptase for almost 5 years.  But I strongly tell you NEVER take it close to any other pills or food.  It dissolves those faster than normal.  That can be really bad news with other pills (ask me how I know) and a waste if taken with food.

I slowly ramped up to…[Read more]

@shahnn

Hi Neha,

I just saw the study going on with serrapeptase.  Do you have any results to share? Please use my screen name (like yours above) so I will get notified.

stay well…
Steve

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]

@jofac-ohandlin

Yes I consider the placebo effect on all I take but that would wear off over time as ”reality” sets in.

Having worked in medical in the USN, I try to be acutely aware of mental/physical changes but at best those will be subjective for several reasons.  The progressiveness of IPF seems to slowly affect the brain and of…[Read more]

@fmarzetta

Hi Frank,

What is your heart rate? PAH cause my heart to work hard which creates shortness of breath sometimes.  Also, O2 bottles go to 11+ L, and try wearing a face mask.

Stay well.
Steve

@charlene-marshall

Hi Friend,

Glad to see you here.  Fortunately, I am not on O2 other than at night and on the rare occasion, I need it wandering at home.  Sometimes walking I wish I had one but that is mostly my heart rate jumping a lot – don’t walk far anymore either.

Somewhat my fear is the very long flight from the Philippines back to t…[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?