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📝?
Hello, I am so glad your feeling better. I do believe there is a miss understanding in my comment, I never had covid, my intention was to ask how eveyone was doing and to see if the web site was still a good way to communicate. I do not have facebook so I rely on this means of communication. Some of the posts are extremely old so I am not sure if it is just not updated or evmost of the people use faceboo I so appreciate your reaching out and ckecking on me.. Best wishes and stay safek.
Howdy, I mostly talk to people on Instagram. I've posted throughout my journey and people with PAP reach out there. My pulmonologist recently told me to start checking out the forum here.
Hi Courtney, thank you for your post! It has been a particularly stressful time for our entire PAP community as we all share the moniker of having a "pre-existing pulmonary condition". However, we have yet to have any definitive evidence of how COVID-19 would uniquely impact a PAP patient, and candidly, I hope we never do... I was particularly concerned in reading your post that insurance was rejecting coverage of Leukine (GMCSF). This is an all-to-often situation that can sometimes be overcome by advocacy from your physician and education of the insurance company. We have a letter of GMCSF coverage support we can send you/your physician to help in an appeal for coverage. Email me if you would like us to send you this letter: chrish@papfoundation.org Also, there is a new clinical trial that will begin enrollment soon using inhaled GMCSF. Email me as well if interested and we can provide information as it becomes available.