Pulmonary Fibrosis News Forums | Lystra | Activity https://pulmonaryfibrosisnews.com/forums/members/lystra/activity/ Activity feed for Lystra. Sat, 04 Apr 2026 22:03:26 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 dae43beb65378cfeabee2f9adf80085b Lystra replied to the discussion Quilting in the forum Hobbies & Projects https://pulmonaryfibrosisnews.com/forums/forums/topic/quilting/#post-38080 Sat, 15 Mar 2025 13:53:30 -0500 Reply to Quilting

I also love to quilt!! The math side is harder for me so I follow patterns closely. I realize that I don’t need anymore quilts but the therapy it provides and the total escape is worth it! I do think about what will happen with the quilts when I’m gone but the enjoyment and mental healing this hobby provides is worth not worrying too much…

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]]> 5c15ed1d5898c5e38e873bb37ba18c19 Lystra replied to the discussion Lazer therapy in the forum Treatments and Science https://pulmonaryfibrosisnews.com/forums/forums/topic/lazer-therapy/#post-36867 Tue, 02 Apr 2024 21:24:34 -0500 Reply to Lazer therapy

Lee, this doesn’t have anything to do with Laser Therapy…but I just bought your book! It is very inspiring and you are a diehard exercise dude!! You have been inspiring me so much. I don’t have IPF but it’s slower cousin something called PPFE, Hoping to put some of your great suggestions to use. I have exercised all my life, it’s hard…

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]]> 1b227c80bcf153489b36bbe883f65645 Lystra replied to the discussion Appetite in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/appetite/#post-33249 Thu, 06 Oct 2022 22:26:05 -0500 Reply to Appetite

Elaine,

I struggle with GI issues also.  Currently just taking one Prilosec 40mg a day.  Do you feel the 2xday is helping?  I just stopped Ofev and started Esbriet.  I’m also on Cellcept 2000mg a day.   Sorry for the appetite issues you’re having.

Lystra

 

]]> ddc21ed4541290035d83d5db7d040ac8 Lystra replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32335 Fri, 10 Jun 2022 21:55:01 -0500 Reply to How do you deal with dyspnea?

Sue,

Thank you so very much for reaching out.  We may be rare but we’ve found each other!  I have the same diagnosis except reversed PPFE with IPAF.  There is a chance I  have Systemic Scleroderma because of an unusually  high blood test for Scleroderma. It is what I believe causes the throat problems and GI issues that I have.  For… Read more

]]> 0fc2d4d0867ae66e9d543be64b1b376d Lystra replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32288 Thu, 02 Jun 2022 21:49:15 -0500 Reply to How do you deal with dyspnea?

Hey Pamela,

My next CT and 6 min. walk test will be in Oct. of this year.  My PFT’s have stayed pretty steady and I’ve had a really good month of May!  For that I am forever grateful.  My sats stay in 98-99 range.  Yes Ofev will cause that awful stomach cramping .  I experience a moderate amount of rib cage pain myself.  That may be due to… Read more

]]> 7b97429673f5048db9e64353962eda20 Lystra replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32160 Sat, 21 May 2022 18:59:48 -0500 Reply to How do you deal with dyspnea?

Thanks so much for your reply!  Very much interested in your research for people who have PF and run.  You sound like me we are willing to do whatever we can to keep running and stay active.  You asked about the odd symptoms that I attribute to IPAF.  I find that after I eat or get short of breath I can’t talk.  My vocal cords lock up… Read more

]]> c4d1bf07f77a11f1933a18d6c133fef3 Lystra replied to the discussion How do you deal with dyspnea? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/how-do-you-deal-with-dyspnea/#post-32041 Thu, 12 May 2022 20:05:12 -0500 Reply to How do you deal with dyspnea?

Hello Pamela,

I have been diagnosed with something called PPFE in 2019.  Pleuroparenchymal fibroelastosis (PPFE) is <b>a rare lung disease, usually associated with scarring (fibrosis) of the lungs</b>. It tends to affect the upper lobes of the lungs and cause scarring to the area beneath the lung lining (the pleura) and the lung itself.  This… Read more

]]> ba740517834adaef82bb6a94962bb6ed Lystra became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/33290/ Wed, 11 May 2022 14:45:07 -0500 1