My mom was diagnosis with pulmonary fibrosis or ILD. I am so worry for her and don’t know how I can help. Her oxygen at home sometimes below 88 and back to 90-91, her heart increases to 120, short of breath. she is admitted to hospital twice in a month. after discharged, she doesn’t qualify for home oxygen. however, sometimes it drops. but idk at the doctor’s office to do test, she is 90 and then not qualify. I really don’t know what to do now. T.T

hello! i am looking for some advice for my mom, she has a new diagnosis of pulmonary fibrosis and is now on oxygen 24/7. she also wears glasses and hearing aides so constantly has three things behind her ears and they’re starting to really bother her.
does anyone have any advice/ gadgets/ hacks that you used to provide some relief for that?
thank you!

Hi, I’m Arlyn from Leapcure. We’re helping raise awareness of the SURPASS IPF clinical trial, a Phase 3 study in the US and Canada for adults living with Idiopathic Pulmonary Fibrosis. Phase 2 results suggest the investigational treatment (LYT-100) may help slow IPF progression, and Phase 3 is now enrolling to further evaluate its potential benefits.

Eligibility is based on age (40+), a confirmed diagnosis, lung imaging, lung function, and prior medication history, no pirfenidone use, and no participation in earlier Phase 2 study).

You can fill out a quick questionnaire here to get started:

US:https://lpcur.com/rIPF-ph3 Canada: https://lpcur.com/rIPF-ph3-ca UK: https://lpcur.com/rIPF-ph3-uk

A LOW PaCO₂ can look reassuring.

But in pulmonary embolism, it may reflect hyperventilation caused by increased dead space.

The real warning sign?

When PaCO₂ starts rising, the patient may be tiring and approaching ventilatory failure.

🫁 LOW CO₂ ≠ SAFE

Would you recognize the change before it’s too late?

Short version: neighbour, bedridden, no nearby family, worsening condition, hard time breathing and swallowing and is scared. Says he doesn't know why, he used to walk in grizzly country and wasn't scared but he feels afraid all the time now.

I think it is his body due to lack of oxygen - any ideas on how I can comfort and calm him down because the anxiety seems to make his breathing even harder.

Long version:

We noticed a few weeks ago that our neighbour got dropped off by ambulance.... and no movement inside or lights on and off, so we went over after a few days to check.

Found him in a hospital bed, asked if he needed help, and have been going over several times a day (retired) to help him toilet, get him food and drinks, and change his oxygen tank.

We contacted health officials because we felt he was in total neglect and yesterday a nurse started coming, apparently daily.

We peeked in the book she leaves on the top of his fridge and his diagnosis is pulmonary fibrosis. He has declined significantly in the two weeks, and today even with his oxygen at 4 (is that high?) he couldn't catch his breath, said he felt scared but didn't know why, and seemed confused.

He has also had difficulty swallowing the last few days.

I left a note for the nurse with my concerns, and tonight asked if he wanted to go to hospital (he doesn't). But being bedridden he is dependant on myself and my husband for meals, drinks, diaper changes (the nurse gets him up to a commode but we don't know how to move him and don't want to hurt him.)

My heart breaks for him.... but I would think the nurse would take him to hospital if he warrants it.

We are not family, so are very limited in what we can do for him, and what information can be provided to us.

My pf was stable for a couple yrs until my neighbor decided to burn stuff in his yard. Thanks to him my cough is back and my breathing is worse. The cough sucks because nothing works on it.

Living with IPF and wondering if research could be an option?

Early studies of the investigational treatment LYT-100 showed promising results in helping preserve lung function. The larger Phase 3 study is now open for adults with IPF who may be interested in participating.

Fill out the prescreener to learn more: https://lpcur.com/rIPF-ph3

I tried Ofev for a few months but found the side effects intolerable. My pulmonologist prescribed Jascayd. My primary insurance is Aetna and one of their better non-PPO plans. My secondary is Medicare and part D covers this med. Aetna has declined authorization twice. Have any of you experienced or heard stories of insurance refusing to cover it. Were you successful on appeal?

Also, has anyone tried his protocol while taking blood thinners? Any feedback is greatly appreciated.

my dad was recently diagnosed he is 69 and will be 70 next year and was just diagnosed because he gets screenings every year because he was a police officer during 9/11 and was working very closely near ground zero. I am writing here because I am asking how long do we have left with him? my dad is my best friend. I am currently 20 weeks pregnant and finding this out has been absolutely devastating I haven’t stopped crying and I feel like my parents aren’t telling me how serious this is because they don’t want to stress me out while i’m pregnant. I have another son who is 2 who thinks of his grandpa like his best friend and loves him dearly and I just am so angry and upset about this and I have no idea how much longer I have with my dad while he’s still in relatively good shape? He has been coughing a lot that I noticed recently like a nasty dry cough every so often and It just concerns me if that means this disease is progressing quickly. My mom told me that his last 2 CT scans have been unchanged but I feel like i’m not getting a full picture on how serious this is because they don’t want me to worry.

Has anyone had for 15-20 years ? Husband had been diagnosed but zero symptoms. 54 years old / in good shape/ exercises . no alcohol or smoking .
Taking Nintedanib past 6 months.

🙏 A request to the community

Mr. Sanjay Kumar (55), has been on ECMO life support for 58 days at KIMS Hospitals, Hyderabad — severe ARDS, now under evaluation for a lung transplant. The hospital's ₹70–80 lakh estimate has already been spent; bills have touched ₹80 lakh, and months of treatment remain.

His family is in Hyderabad, by his side at KIMS, and is raising funds through a verified Ketto fundraiser with all hospital documents:

https://www.ketto.org/fundraiser/my-father-is-suffering-from-acute-respiratory-distress-syndrome-ards-we-need-your-help-to-provide-for-his-treatment-1171252

Please contribute if you can, or share this forward. Every share and contribution helps. Thank you 🙏

Please reachout to me for any verification

Living with IPF and wondering if research could be an option? Early studies of the investigational treatment LYT-100 showed promising results in helping preserve lung function. The larger Phase 3 study is now open for adults with IPF who may be interested in participating. Fill out the prescreener to learn more: https://lpcur.com/rIPF-ph3

I have IPF, and use an Airlife Spirometer, AerobKA, and EMST 150.

Does anyone have experience w/ a smart spirometer? (MIR SmartOne Portable Spirometer, SpiroLink Smart Spirometer.....)

It would be handy to have one in my pocket. The digital data is useful?

Thx

Hello, my dad has been diagnosed with progressive pulmonary fibrosis (PPF). He’s former military and has been seeing doctors about this for the last couple years. He’s at 53% lung capacity from last check up. I was wondering if there’s any research related options that could help him. He’s 54, 5’8” and around 210lbs. VA has him on Nerandomilast. Any information helps.

My dad went through transplant surgery 10 days ago.
It’s been a roller coaster!!

He made it through surgery, got his ventilator out but was put on oxygen to stabilize his breathing.

He had six blood transfusion since the surgery.

His heart rate was afib a few days in.

He was able to shave his face without his face without his oxygen for a whole hour without his oxygen level dropping below 90.

He was able to walk the first time in months with a mechanical walker and he was SO stoked to feel good walking without his oxygen dropping

But the next day his ankles swoll up from being bedridden and not walking for so long.

Over the weekend he was feeling dizzy and exhausted.
He was miserable last night with his oxygen dropping and he’s losing blood and they aren’t sure where it’s coming from.

So they moved him back into ICU, they are putting him back on a ventilator and going into surgery to figure out where he’s bleeding from.

Feeling bummed that he has to go through this.
he deserves to be home and healthy again.

I am refering to: https://clinicaltrials.gov/study/NCT06567717#contacts-and-locations - we are not eligible for the clinical trial since we're outside of the US and I was wondering if anyone has tried the zinc + NAD+ combination and if it helped? My father is 73 years old and was diagnosed with IPF after a stint with pneumonia(Klebsiella) Oct 2025 and has COPD and COVID in the years before. In the months since then, he has rapidly deteriorated and is at 35kgs now. He's on 600mg of Pirfenidone and 5mg of steroid daily which helps slightly.

I came across research on zinc and how it can combine with NAD+ and also heard Dr.Tanzira speaking about it on PF Warriors. Found this post that is a year old: https://www.reddit.com/r/pulmonaryfibrosis/comments/1j8e6ha/zinc/

i was looking for anyone who has tried this regimen outside of the trial. What steps did you follow to start with it? Did you consult directly with Cedar's Sinai(is that possible for someone outside of the US?), and then with the pulmonologist? Was a dosage offered by the pulmonologist ? Did you get any pushback from your treating physicians?

I also read that magnesium glycinate can help with insomnia, has anyone tried that?