Some refer to mindful living as being aware of or engaged with all that is going on around us. I think of it as being present in the moment. 

It is putting my phone aside or closing my laptop. It might look like turning off the television or putting down a book I am reading. It is stopping you from doom-scrolling as you look for info… Read more

Hi Scherry,

The site is Pulmonary Fibrosis News. The umbrella of fibrosing lung diseases is more encompassing. Pulmonary fibrosis and idiopathic pulmonary fibrosis are both interstitial lung diseases (ILD). NSIP is also an ILD. Lately (several years), the term progressive pulmonary fibrosis has become more common to recognize other ILDs that…

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Hi Scherry,

Your situation is not that unusual, as different drug combinations can either amplify or mask side effects. Because you are doing your own work to narrow down which might be causing the issue, you are on the right track. Look at the link above. The FDA MedWatch form walks you through how to report the information.

I find the form to…

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Last 4 days I’ve been experiencing tachycardia, first episode was around 4-5 hours, pulse would go from 160ish down to 60, then back up sometimes. Mostly it stayed high. I started Tyvaso for PH 3 weeks ago and cardiologist started me on HCTZ around the same time since BP was running high. I was so afraid. Didn’t take either of those meds next…

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Hi, I have ILD/NSIP and I get confused by IPF references vs ILD. This site is pulmonary fibrosis foundation. I’d appreciate you help!

If it lets you escape briefly, it is perfect. What period do you enjoy writing about in historical fiction?

P2-E6 Manual – https://www.rhythmhc.com/Product%20Manuals/P2-E6-Manual.pdf

P2 Manual – https://www.hendrickhealth.org/documents/medical%20supply/Lifestyle-P2-POC-Manual.pdf

Organ donation is so much more. Eye and tissue donation can help multiple people.

Sam…

That is a good point, Jeffrey. If you suspect it is associated with one of your medications, it is worth reporting. You can also report it as a possible interaction with another medication, which is also important. Personally, I err on the side of reporting.

One difficulty I have with reporting side effects is that I’m often unsure whether the issue is a side effect of the medication, or of some other medication, or merely of old age. That makes it difficult to decide to report the issue, in case it is from another cause rather than from my Esbriet.

You might be a candidate for pirfenidone (it comes in a GENERIC FORM now) instead of OFEV. Ask your pulmonologist if this drug has any potential for you….

No — for the simple reason that my organs would be in too much of a state of disrepair for anyone else to use.

I don’t even have the manual for the units (portable and standalone) that l have now. I found the manual for the standalone (BIG unit) on the internet — I still haven’t found the manual for the Rhythm Health Care P2(E6?) any place — not on the Apria website (Apria is my DME provider for oxygen supplies), nor any place else.

I would NEVER stop a medication FOR ANY REASON while on vacation. I know that with pirfenidone (OFEV’s competitor in the IPF space) any break of 14 days + would mean that you would have to ramp up to the full dosage ALL OVER AGAIN as if you were starting from the beginning (1 X 267 in week one, then 2X 267 in week 2, then 3 X 267 in week 3…

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My oxygen unit is NOT an Inogen: it is from RHYTHM HEALTH CARE (either the P2 or the P2 E6: I am not even sure which unit I have other than I know it’s black) — and only lasts about FOUR HOURS per charge (when the charger is not plugged into the unit) on 2 L / minute (my current oxygen amount when I am on the go). I would have to have the…

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You are lucky that you had no problems. One of my pulmonologists (I am up to THREE) wants me to consider JASCAYD (its brand name). Boehringer-Ingelheim has also put out Arikayce (which I was supposed to go on in some kind of ongoing trial to reduce my production of mycobacterium avium complex), but I rejected it (at the last minute) when I…

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My wife (she’s the caregiver) and I like to watch mindless old sitcoms. I’m a history buff, and I find a lot of interesting YouTube videos. But the main things I do are play the piano and write historical fiction. They engage me so much they take my mind off the IPF. I would think this would happen with any creative activity: writing,…

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The medications that pulmonary fibrosis patients must take often come with side effects. Here in the forums, I have read a number of comments asking if anyone else experienced (insert side effect) after taking (insert drug name).

You should always inform your care team of any side effects you recognize.

Did you know you should also… Read more

Those shows should let you escape from the reality of this disease.

I started taking Jascayd in November. I noticed a little loser back pain, but nothing real bad. I would lay on the ground and do some stretches and it usually helped. In the last month or so it has become very more painful. Did anyone go off Jascayd because of lower back pain, and if so did the pain go away? Thank you.

Keep in mind that the battery life has to be 1 1/2 the length of the flights. If the flight is 10 hours, the battery[ies] have to be good for 15 hours. Important to bring documentation. I was almost denied boarding on a flight to Belgium last summer.

My husband and I enjoy watching Survivor, too! Found all the seasons on Paramount and (re)watching them all! He is in late stage of IPF… & enjoys watching all the reality “Alaska” shows, his favorite sport teams, Colts, Huskies, Dodgers and Chase Elliott race! We’ll watch the Game Show Network together throughout the week, too, for some…

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Living with PF is a terrible reality show. How do you escape from your reality? I have developed a fondness for the television show, Survivor. Maybe it is more of an obsession. 

I seek out not only Survivor here in the US, but also Survivor Australia, and, when I can find it, Survivor Africa.

Do you use television as a break… Read more

Hi dle,

I would suggest you ask your care team first. Not knowing where you are on your journey, it is hard to answer your questions. If you are tolerating Ofev well with no apparent side effects, is there a reason you want to pause it while on vacation?

Regarding whether you can have wine, make your case with your care team. Prior to…

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Rest easy, Debra. My condolences to your family and friends.

Hello. I love to take vacations with family and friends. I am wondering if it is ok to take a break from Ofev while on vacation. I have no side effects, and wonder if it is ok to have wine with dinner. Since I have no side effects is it even necessary to take a break? If I do take a break, for a week, will the disease progress within the…

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Viola Conklin

🙏 Rest in peace.

Breathe easy, Debra. 🙏🏻 for Debra’s loved ones.

I use a Bench in the shower. Before you get in the shower turn your oxygen up. Get in shower and wet yourself then shampoo hair with cannula in giving you air. Soap up body and finally face with cannula out. Rinse face first then put cannula in and rinse your hair and body while seated . Stand with grab bar and rinse the rest. Dry while…

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It helped me to hang the hose down my back, rather than the front which was my habit during the rest of the day. That way the cannula would not be u dear my chin as I washed my face.

My experience was that the positive pressure of the air coming out of the hose kept water from going into the tube. I would never submerged it, but the splashes…

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Hi I shower with it on and do hair and face as well. I stand with my back to water for my face and gently go around and under the sides of the cannula. I have also used in shower and just take it off briefly to wash face and hang cannula over faucet. You could also use a self attaching hook higher up that keeps water out of it. So many things…

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Debra Anne Stafford Lowder

July 10, 1953 — March 27, 2026

Mt. Holly, NC

When you say your breathing gets worse, are you referring to shortness of breath or a decreasing oxygen saturation level?

This is one of the inconveniences of supplemental oxygen. If you require oxygen while you are showering, you might consider using a shower chair or bench. Sitting is usually less exertion than standing.

Sam…

Hi everyone, hope you had a great day today. How do you guys wash your head and your face in the shower. Ever since I started using oxygen, I tried to use the oxygen in the shower but when it’s time to wash my head and my face I have to remove the nose cannula but by the time am done my breathing would be worse. Is there a way we can do…

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An easy way to prove battery life is to pack the manual for the POC. The battery life for each setting is usually listed in the manual.

Are you an organ donor? Not everyone is an organ donor. As a member of the PF community, where a transplant may be the only viable option, the need is great.

If you are not an organ donor, can I ask why? If you are an organ donor, are you comfortable asking others whether they are registered organ donors? 

hello to the 3 musketeers above. YES i also have had traditionally back pain but nothing like recently. i started with JASCAYD, (18MG / 2 D) About 6 months ago. i had tried OFEV but my stomach just could not handle it. and YES my back pain has been intolerable. i stopped taking it since i also started w loose stomach. i have now restarted…

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I added Jascayd to my OFEV regiment two weeks ago and for the last 4 days I started having debilitating back issues. As most, I have some pre-existing back issues but none have ever hit me like this did. Getting up from a chair or from bending over the sharp pain was so bad that my knees would buckle…that was a new one for me! I am going to…

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He Sam – thanks. VA reminds me of vacs when needed. Stay well – Steve

Make sure you inform your airline that you will be bringing a POC with you, and check about their policy etc. Most airlines require that the battery will be sufficient to provide oxygen for 1 & 1/2 times the length of the flight. Translation: if the flight is going to take 8 hours, your battery must be able to last for 12 hours. Some…

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Hi, I take Jascayd and Ofev. Been on both for about 2 months. So far no side effects. Not even diarrhea or nausea. Have had no back pain at all. We never know how we will react to these drugs. Hoping the 2 together will help. Tomorrow could be entirely different. Brenda

I take all 3. You can take the OFEV and the Jascayd. Just started the Yutrepia 3 weeks ago but was using Tyvaso prior to switching. I could not tolerate the Tyvaso. It is the same medicine but a different inhaler and it is much better. I am doing well on the Yuptrpia. I take so much medicine and can’t tell if I am having another side…

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I remember having this pain that radiated down my back to my leg like sciatica early
But the pain did stop and have not had it again. Asking a new question Has anyone switched to Jascayd from Ofev or perfididone? I have definitley gone down at a faster rate with it . Has anyone else? Also taking new drug Yutrepia

I was diagnosed with sleep apnea and was put on the paper, i had inital covid then PF…I believe the two caused PF as I ran and biked months before..SPO2 is usually 92 now.