Pulmonary Fibrosis News Forums | Karen Bowen | Activity https://pulmonaryfibrosisnews.com/forums/members/karenb/activity/ Activity feed for Karen Bowen. Sun, 19 Apr 2026 14:02:24 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 3d81ee6a1b0632ff2e77f91595d4f4c1 Karen Bowen replied to the discussion How quickly can pulmonary fibrosis progress? in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/how-quickly-can-pulmonary-fibrosis-progress/#post-35400 Fri, 14 Jul 2023 14:08:36 -0500 Reply to How quickly can pulmonary fibrosis progress?

PF is an umbrella for so many Interstitial lung diseases.  Since I developed it – & yes I say DEVELOPED it – I’ve researched it inside & out.  I’ve met people that have had it “comfortably” for 15 years. Others 5-7. And  then the 1-3. Depends, I believe, on when diagnosed & what the underlying exposures or medical condition is/was.  PLEASE get a… Read more

]]> f17e37ab7af937581794d130bcf6bb45 Karen Bowen replied to the discussion Cost of Ofev in the forum Ofev (Nintedanib) https://pulmonaryfibrosisnews.com/forums/forums/topic/cost-of-ofev/#post-34330 Tue, 07 Feb 2023 20:22:52 -0600 Reply to Cost of Ofev

Hi GreatfulDeb….. I went thru Boehringer Ingelheim for OFEV, filled out the financial aid info & I got it for free. I’ve Medicare & BCBS. Boehringer was a much quicker turnaround than dealing with Genetech (who tried to block Sandoz from developing & making the generic Esbriet).

You do need to go thru your Doctor. They took the paperwork… Read more

]]> 00e1b0f0a5c98091d7e95849ad8842c4 Karen Bowen replied to the discussion Optimum Esbriet dosage in the forum Esbriet (Pirfenidone) https://pulmonaryfibrosisnews.com/forums/forums/topic/optimum-esbriet-dosage/#post-33259 Mon, 10 Oct 2022 19:25:25 -0500 Reply to Optimum Esbriet dosage

Joing in better late than not at all!

I’d been on Exbriet for 3 months & had no side effects until recently. My doctor cut me back to 2 pills 2x’s a day but the lack of energy & dizziness only improved a bit. I asked him if I could take a break. It’s been 10 days & I’m not feeling any different – dizzy, no energy basically still. He has… Read more

]]> f22d9a447984844ce8a239f3d7582104 Karen Bowen posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/34785/#acomment-35321 Tue, 04 Oct 2022 20:28:44 -0500 Thank you! Had a hell of a time signing in! All appears well now 🙂
I also belong to an ILD Collaborative here in the Boston area – great group of people, have zooms discussing many topics with professionals – Doctors, Repiratory Therapists, looking forward to the oneon diet & IPF. I’ve actually shared with them some of the things I’ve… Read more

In reply to - Karen Bowen became a registered member ]]> dc8f35b73d91b0067536c8327a5df6e2 Karen Bowen replied to the discussion Leaving the house on 4LPM oxygen? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/leaving-the-house-on-4lpm-oxygen/#post-33211 Tue, 04 Oct 2022 20:13:33 -0500 Reply to Leaving the house on 4LPM oxygen?

Hi again….. I’m on 4lpm myself & when my stats crash I have to sometime bump up to as high as 7lpm, 6 at the least. Doesn’t give any of the tanks much life. There is something called an oxymizer that can be used to conserve oxygen. I believe you need to be tested for it to make sure you’re a candidate for using it. Your RT will test… Read more

]]> f8304bea848f3caba0dbc412c1f2e605 Karen Bowen replied to the discussion Can a spirometer increase lung capacity in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/can-a-spirometer-increase-lung-capacity/#post-33210 Tue, 04 Oct 2022 19:50:08 -0500 Reply to Can a spirometer increase lung capacity

Hi Natalie! YES! the Spirometer will exercise your lungs & help with expanding their capacity. My Pulmonologist and the doctors I’ve encountered at the hospital all have told me to use it. My PT & OT have also pushed me to use it. “At every commerical” they tell me. Our disease is one of progression so if this helps keep the dogs @ bay,… Read more

]]> 3b8f802476f3f4346d544806f6a21cd2 Karen Bowen became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/34785/ Mon, 15 Aug 2022 13:49:43 -0500 2