PAP Discussion Forum

Hello, I'm Courtney. I'm 31 and I was diagnosed in 2018 with aPAP. I had my first WLL November 2019. I was supposed to get the inhaled luekine but my insurance is kicking it back. Since the wash, my oxygen has been in the upper 90's unless I become exhausted, I have sinus issues, or the weather changes. Covid hit and I started researching how people treated themselves, just in case I got sick. I found Mullein Tea and elderberry supplements helped a lot of people, along with over the counter flu meds 😷 . I ordered some to be prepared. I started drinking the tea mainly because I was paranoid that I had covid. It was early spring so flu, cold, and allergy season were in full swing and all of them have the same symptoms. Overtime, I realized the tea just helps me with my bad days. I don't think it does anything with to the protein in my chest but I think it help with any additional fluid in there. Hot tea is also calming so that helps 🍵 . I also completed an 8 week program called AbleTo during the worst part of the pandemic. AbleTo is a therapy program for the people with chronic disease. They help you change the way you think about your life with chronic disease. AbleTo called right before the pandemic hit Michigan and said my insurance covered it. This program set me up with a therapist and a behavioral therapist; you don't meet in person or video chat, you talk on the phone. They both called me separately once a week. The therapist helped me stay calm during the pandemic and helped me accept where I am now and stop fussing about what I used to be able to do. (Being 30 and being able to run was taking a toll on me 😣 ). The behavioral therapist helped me set goals and held me accountable. Since I found out about my aPAP, I had developed severe anxiety. At the end of the 8 weeks, my anxiety decreased by a ton 😀 . This definitely keep me sane during this unbelievable year! What did you all do to stay sane during a pandemic 📝 ?

Interested if anyone has symptoms of Covid19 / confirmed diagnosis with APAP AND how doing. I had mostly cleared lungs after inhaled leukine. Lung lavages only bought me time prior to the leukine, injected leukine didn't help. the amount of PAP in my lungs had increased about 9 months ago. restarted leukine, have not had a follow up CT to evaluate effectiveness, but pulse ox is mid/upper 90's at rest. some desats low 90s high 80s with activity and only slightly winded. i started 2 weeks agobwith red eyes, swollen right greater than left. next day go symptoms lasted for a few days. since just fatigue, feeling something off. Now into day 4 of fevers from low grade to maybe 102 using an old oral and a no touch thermometer, with head ache and ringing in ears and fatigue, which seem to be related to fever. brief dry cough woke me this am .working remote and don't qualify for testing. i am not on any nebs orn inhalers. symptoms seem to suggest covid, and hoping I don't get any respiratory, just wondering if anyone out there with covid and how progressed, symptoms were managed. thanks. stay