Pulmonary Fibrosis News Forums | Susan | Activity https://pulmonaryfibrosisnews.com/forums/members/susanlee/activity/ Activity feed for Susan. Sat, 04 Apr 2026 02:45:48 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 e7272cf8cc38d08dc76a0f15d386cc55 Susan replied to the discussion The End in the forum Using Our Forums https://pulmonaryfibrosisnews.com/forums/forums/topic/the-end/#post-36672 Thu, 22 Feb 2024 22:16:09 -0600 Reply to The End

I have been on oxygen for 5 years now, have progressed to tanks. I’m grateful for the time I’ve had because of the 02. I’m on 6-8 liters up and about, 3 at night. Have to stop and rest to allow my levels to get back up, can drop to 79 to low 80s. Have PH too. On alot of meds, including Atemra infusions, just started. Have systemic.…

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]]> 5f3974c9acf88f7d17993cbc8f959519 Susan replied to the discussion Confused and scared in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/confused-and-scared/#post-35623 Wed, 16 Aug 2023 03:03:35 -0500 Reply to Confused and scared

I’m not sure where you are in Texas, but a Center of Excellence as others have mentioned is the way to go. Houston area has them, and in the Dallas area UTSW or Baylor, Dallas.
PF Warriors support group is excellent, online zoom meetings and FB confidential posts.
🙏❤️✝️

]]> 976ae6a01cef44714d6340368360085a Susan replied to the discussion How to relax with severe breathlessness? in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/how-to-relax-with-severe-breathlessness/#post-35078 Thu, 18 May 2023 22:24:43 -0500 Reply to How to relax with severe breathlessness?

Please get to a Center of Excellence for pulmonary disease.

]]> ed39f9c28bfa994aee9bf295e9984963 Susan replied to the discussion Ofev and Plaquenil in the forum Welcome Lounge https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-and-plaquenil/#post-34485 Thu, 23 Feb 2023 22:44:39 -0600 Reply to Ofev and Plaquenil

I’m using cellcept, plaquneil, ofev and tyvaso, and on pantaprozole, bactrim, among other meds and supplements. My lung dr told me on 2/21/23 that I’ve remained relatively stable for 3 years. I was diagnosed with ild in 2009, later connective tissue disease and scleroderma. I’m on oxygen 24/7, 6 liters on exertion. I go to UTSW, Dallas. So… Read more

]]> fa6140e604f6144772478ebf62de783d Susan replied to the discussion Pulmonary Rehabilitation in the forum PF Life: 50+ https://pulmonaryfibrosisnews.com/forums/forums/topic/pulmonary-rehabilitation/#post-30635 Tue, 21 Dec 2021 20:15:34 -0600 Reply to Pulmonary Rehabilitation

I have found melatonin helpful for sleeping. Check with your dr

]]> 487c6aec4e122a2813bfc51752e829a7 Susan posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/29188/#acomment-29328 Wed, 01 Sep 2021 00:13:03 -0500 Thank you Christie

In reply to - Susan became a registered member ]]> 17206a99439b8f814c4a981156d973cd Susan became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/29188/ Thu, 26 Aug 2021 20:38:57 -0500 2