I am a strong believer in Western medicine and the importance of vaccinations, especially when living with a chronic illness like IPF. I came down with pneumonia, RSV, and influenza A this year, and it nearly killed me. It also significantly damaged my lungs. I routinely get the flu shot, but I’ve never gotten the pneumonia or RSV shot,… Read more

As patients living with a chronic illness like IPF, we’re used to navigating multiple medical appointments. Oftentimes, when I share with friends the number of appointments a typical clinic day is made up of, they’ll often say to me, “That must be exhausting”. I always answer with a short confirmation that it is, which is why I try to avoid… Read more

A tip that helps me stay active with IPF, especially in the harsh winter months in Canada, was buying a walking pad for my room! I’m able to just get out of bed now, transfer my oxygen source to something portable and do some walking in the comfort of my room and pjs. It was the best $200 I ever spent this year!
Char.

Hi @masonryt,

Instead of renting a POC, is it an option to have your doctor fill out a Fit to Fly form for oxygen on the plane if needed? I’ve travelled with my Respironics SimplyGo a lot on a plane and just needed paperwork to support the use of it as needed. I also required 2x the length of the flight in battery power for the POC, but once…

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Welcome 2026!

I used to be all about New Year’s resolutions! I loved setting goals and working throughout the year to achieve them. However, that changed after my pulmonary fibrosis diagnosis. I still strive to be intentional about how I want the upcoming year to look, but I put less pressure on myself to accomplish those… Read more

Hello forum family,

I was recently admitted to the hospital, spending a couple of nights in the ICU, due to both pneumonia and influenza A. Despite having many hospitalizations in the past, it was a scary time, and I noticed some differences in my treatment this admission compared to previous ones.

Has anyone ever discussed the… Read more

Hi @DMoffett ,

I actually wear my cannula backwards at night to help it stay in place! I know it sounds weird, but the “v” part of the cannula I put at the back of my head and tighten it versus under my chin and this has worked really well for me as the only part of the cannula that is in front is the prongs in my nose. I know some people…

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Hi Vance,

Thanks for sharing about the ring – interesting! Many members of the forum have discussed the use of an Apple Watch to monitor their oxygen levels, but I’ve not heard of this ring and I’m sure people will be curious, I appreciate you sharing! The Apple Watch is far pricier and understandably out of some folks’ budget. I’m going to…

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Merry Christmas Vance!
Are you noticing any other side effects from the Tyvaso?

Hi DMoffett,

I remember trying to navigate the loud oxygen concentrators at night and learning how to sleep with the background noise! I put my concentrator in another room or just in the hallway and purchase the long tubing off amazing to run it into my bedroom. That keeps the noise level down and promotes better sleep overall for me. I also…

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Beautiful post John, thank you for taking the time to share them with us! I have no doubt it will inspire others, thank you for sharing 🙂

Char.

Hi Everyone,

The management of OFEV side effects is a popular topic of discussion on our forums and for good reasons – they can be really hard to manage! I am on OFEV at 150 mg/day as well, but had to essentially go off and back on it multiple times, titrating down to 100 mg to test my tolerance before I could manage this dose. I also wanted…

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I am also sending prayers for your mom @raj1969! I am just curious whether she would qualify for the FDA-approved drugs to manage IPF? The side effects are something to consider when it comes to quality of life as they can be hard to adjust to but just wanted to share if this might be possible for your mother to consider. Keep us posted on how…

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Hi @katie-bagshawe,

Welcome back!!! Of course we remember you! I completely understand the need to take some time and refocus on you; grief, the pandemic and the state of the world can be all consuming at times. Congratulations on your son, that is very exciting and I’m sure your Dad is looking down with much pride! We look forward to having you…

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Thank you for starting this thread Alam! I am also very curious about patient experiences with Jascayd in general, plus taking it with OFEV. I look forward to folks sharing their experience.

Char.

On September 5th, I had an important test at one of the big urban hospitals near where I live. The test was unrelated to IPF but rather following a surgery that didn’t go well (because my lungs couldn’t handle sedation, but I digress…). It was a follow-up to nerve damage I was experiencing.

The appointment went very well overall. However, I… Read more

There is a lot of information out there regarding idiopathic pulmonary fibrosis (IPF)!

When I was diagnosed in 2016, the first thing I did was sit down and read all that information, and what I read terrified me. This topic has been mentioned on our forums before. However, I think it is beneficial to reiterate it as we’re always welcoming new… Read more

This is a great post Sam and definitely something IPF patients need to be proactive about – travel with a lung disease can be scary! Like other forum members have said, I travel with extra medication, an extra 02 concentrator battery and a list of my medications in 2 spots: a printed out copy I keep with me, as well as a list of them (and…

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Hi Stewart,

I also primarily use a concentrator (Respironics SimplyGO) but find it heavy when moving around the house and I can still get sufficient 02 needs via concentrator or tank. I advocated for a D sized tank, which in my province is covered by provincial health insurance, and ordered a backpack for it to carry out and it’s been a game…

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Headaches are a common ailment that many folks have to deal with, regardless of whether or not they live with a rare disease. Even before my diagnosis of IPF in April 2016, I dealt with headaches from time to time. However, they seem to be getting increasingly worse as my disease progresses. I’m currently trying to track my headaches over a… Read more

September is an important month to many in our forums community as it marks Pulmonary Fibrosis Awareness Month. When I was diagnosed with IPF in April 2016, I was told this disease was rare, and it is still classified as a rare disease according to the National Organization for Rare Disorders (NORD). Despite it being rare, PF Awareness Month… Read more

@Samuel Kirton I am so jealous! Enjoy the Summit. I was there in 2019 when it was in San Antonio and loved it, so much to learn and it’s great to meet people in person as well. My favourite part was the vendor “fair” where you could walk around and meet with different vendors about PF products and services that helped you live well with PF. The…

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Pulmonary rehab has been a lifesaver for me on multiple occasions, especially after an acute illness or exacerbation. My local transplant center offers a good pulmonary rehab program that I can do in person but if yours doesn’t or you aren’t close enough, there are some credible online options like: https://pulmonarywellness.org Check it out…

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I agree with you Bryan! There’s also a bit of an assumption from society that our convenient technology devices (ie. AppleWatch) can accurately track our 02 levels. While certainly better than nothing, my Pulmonologist recommended I use my AppleWatch 02 tracker to cross-reference my oximeter reader only, but rely on the oximeter more. They are…

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Hi Debra,

Thanks for this post. I’ve also heard (via webinar) and been reading about regenerative medicine through the use of stem cells for different types of diseases, including pulmonary fibrosis. I don’t know if anywhere is conducting this treatment already, but it sounds like the representative you heard speak says there is? I’m leery…

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Everyone’s journey with IPF is different. Some of us experience nasty side effects from the medications to manage this disease, whereas others don’t. In the same way, the disease itself seems to cause varying side effects from patient to patient, based on conversations I’ve had with others living with IPF.

Has anyone dealt with hair loss as… Read more

Since my diagnosis of IPF several years ago, I’ve come to know and love many members of the IPF community. One thing that makes these forums so special is the sense of community felt across the site. Everyone shares so openly and is very supportive of one another.

The hardest part about the special community of IPF patients is when we lose… Read more

Hi Stephanie,

Thanks for your reply to this thread. Unfortunately, there can be a familial or hereditary components to this disease. It seemed rare when I first heard about it, but I know several patients now where siblings all have IPF or a Dad and son for example. You can read more about this if you’re interested on: pulmonaryfibrosisnews.com.…

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My forums co-moderator wrote a great column about this already; however, for the Canadians on this site, particularly those in Ontario, you’re likely having a tough time with the record hot temperatures blanketing the province this week.

How to manage the heat with IPF is always a popular topic of discussion among patients on the forums and… Read more

While Michael did not have IPF/PF, it feels fitting that this memoriam is made to our forums, as he was an integral part in getting the Pulmonary Fibrosis News Forums off the ground several years ago!

Outside of his diagnosis of SMA, Michael was a valued employee of BioNews, the parent company of Pulmonary Fibrosis News. You may have… Read more

This is a great post for discussion @Samuel Kirton and thank you for sharing your thoughts too, Linda! I agree, one must be very skeptical of non-prescribed therapies in an organ as precarious as the lungs. I’m not discouraging folks from doing their research into various options for symptom management, especially because treatment for IPF/PF…

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Thanks for sharing this resource link @jaymead, I’m sure it will be helpful for others’ looking into strengthening their respiratory health. There’s some great apps to help with this too!

As for the question about golfing with oxygen, I’ve done this! I have a small D-sized tank that I strap into a backpack and have played golf this way. No one…

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