Acute Exacerbation

[Steve Dragoo]

Hi Tempo – AE can be substantially different per individual and per incident. Had at least 2. The 1st was almost devastating. Initially I could not not sit up in bed. Didn’t eat for almost 6 weeks but I don’t recommend it as a weight loss program. It took almost 10 months before I could help again around the house and I have never recovered completely since Sept 2020. The 2nd was May 2022 and was much milder mainly was very tired and weak but got through it ok.

Any cold or – worse – the flu has a harsher impact on those with IPF I was 1st diagnosed with ILD Oct 2016 in the Philippines at age 67 and will be 76 in May. So this coming Oct will be 9 years into this lovely disease.

Lots of things you can do to help yourself.

Stay well…
Steve

[Ric]

Hi Steve:

Were you the guy who used Hydrogen Peroxide and was able to heal one of your lung scars?

Rick Hansen

[Rod Branham]

Steve, I can attest to that. I got Pneumonia in December and it took 4 rounds of antibiotics and a round of Prednisone to get me back on tract. But, in that time I lost 14% of my lung capacity. I was in a trial and doing well with stable lung capacity. I went in for my last appointment in a trial I was in for a drug that STOPS the progression of IPF and my doctor was upset that I had been put on 4 rounds of antibiotics and gave me a round of prednisone. Since they were doing breathing tests at every 3 month appointment, that is how I knew that the Pneumoni had taken away 14% of my capacity. So you are dead on about what you said

[Temple Mayo]

Thank you Steve.

[Charlene Beck]

great question. I keep hearing this term but dont have any idea what it could look like but Steve gave me some insight. More examples would help me tho.

I have IPF since 2020 appx and have chosen to NOT have lung transplant–

I remain at home mostly so not a lot of exposure to others. I walk daily and i am on Ofev w little to no side effects. My mom and 2 brothers died of this disease.

I wondered if Steve who answered you has had a transplant or not as his longevity is hopeful.

Thank you for any help you can give me. I would love to speak w someone w the disease. I feel very alone. Char B. in new mex

[Samuel Kirton]

I agree with Steve Dragoo… the reasons for an exacerbation are as unique as the individual. I was fortunate that I did not have any exacerbations prior to transplant which I would qualify as acute. Following my transplant, I had three. COVID-19 once, pneumonia once, and a narrowed bronchial stem. All three were handled quickly by my care team. In my view the critical factor is the patient must recognize they are experiencing an event that is an acute exacerbation.

Sam…

[Libby]

I do not have IPF but my ILD (hypersensitive pneumonitis) results in my having similar issues. I had an exacerbation in Jan ’23 after being quite sick with a bad virus that was going around. Lots of coughing that wouldn’t go away. My shortness of breath was acute. I ended up on Prednisone for several months. Then in the Spring of ’24 I started getting short of breath, but I had not been sick at all, and it happened so gradually I really wasn’t sure what was going on. I thought it was probably allergies but no, it was the lungs again. I still can’t figure out how that happens without even having a cold ! So far my exacerbations have been managed with an antibiotic and Prednisone. I’ve found that it does take several months for my lungs to recover even after I’ve finished the Prednisone. It’s almost like rehabbing an injured muscle.

[Debra Lowder]

Best advice ever- keep getting vaccines. Get ALL that are available- pneumonia, flu, COVID, RSV. Also, keep practicing all routines we had in place during the pandemic. Be diligent and take Vitamin C, D, turmeric and eat healthy!

Debra Lowder

[Roger]

Hi all,

I have had IPF for around 2.5 years. I’m not currently on oxygen or on any drugs. I just tried to get into some clinical trials in the past month however I got rejected do to being too healthy.

Since then my health has started to deteriorate (heavy coughing, lots of mucus, low grade fever, and now shortness of breath from walking around the house. I believe I having the AE you are discussing. In the last few days I have started on oxygen when I think I need it. Level 3

This came on very fast and hit me hard.

I have contacted pulmonologist.

Before this happened my oxygen saturation was at 62 on my breathing test.

Thoughts

[Jeffrey Borrell]

I had my first exasperation in March of 2023. I got off my boat and walked 200 feet it was hot out and I had to stop because I couldn’t breathe. From March2023 to April 2024 I could keep my Oxygen level at 92 -94 range with minor activity. Then one day in April 2024 I couldn’t walk from the house to the driveway without stopping. My oxygen went down to 82. The next week I went on Oxygen 2 liters. I was Dx Familial Pulmonary Fibrosis in April 2022. Though in 2005 I found results from an early x-ray that showed minor fibrosis in both lungs. I was listed for a single lung transplant at Columbia Presbyterian in October 2024. Just waiting for that phone call. I would encourage members on this forum to join or read the IPF forum. Very informative but it can be depressing. I wish everyone well and don’t wait to get listed because you may not have the time.

[momofGracie]

I am an 81 year old woman, diagnosed with ILD in Jan 2018. I ended up in ICU in March of 2023 and have been on oxygen (2L) ever since. I had an acute exacerbation a couple of weeks ago. I had been taking Ofev in hopes of slowing the progression of the disease. Despite all the little hacks from the NP, it really messed up my GI tract.

2 weeks ago when in the ED, a scan confirmed progression of ILD and I am finally finished with Ofev.

What I’m hoping to find out is whether or not my breathing will improve with time after the AE. I can only walk a few feet before gasping for breath. Even dressing and undressing is taxing.

And are there any tricks for avoiding another acute exacerbation?

Thanks for any answers you might have.