[Susan]

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. Scleroderma, diagnosed 2008.

My faith, prayers and support have helped so much. Palliative care, counseling, family and friends…

Prayers for all of us and peace from above. ❤️🙏

[Susan]

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.
🙏❤️✝️

[Susan]

Please get to a Center of Excellence for pulmonary disease.

[Susan]

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 yes, taking Ofev has helped, been on it for about 3 years, and cellcept has helped. I’m 70 and under palliative care. Taking it one day at a time, prayers, faith, lots of support and resources. Rehab too. So much to be grateful for,

Susan

[Susan]

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