paula-gee
Forum Replies Created
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Pops were you able to get the oxygen you needed? That was the most challenging part of my treatment because of Medicare requirements you be seen in person to get a prescription. I have tried Ofev and discontinued it because of harsh side affects. I have Hypersensitive Pnuemonitis diagnosed by biopsy but I have been treated for ILD since 2015. My KU Pulmonologist and team are wonderful. Keep asking for help. I am using Cell Cept, Prednisone 10-20 mg, and Azithromycin 3 x a week. Take good care. Paula
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Hi there. My name is Paula. I have hypersensitive pnuemonitis which is caused by mold. I was diagnosed in 2015. Starting using oxygen in 2019. Has your Dr suggested or tested you for needing oxygen?
Tried Ofev. Too harsh for me. I use Cell Cept, azithromycin 3 x a week, and 10-20 mg of prednisone. Seasonal allergies affect my breathing but being on oxygen makes a big difference to me. Keep asking questions and follow here, FB, and lung groups. There is great sharing and support. Blessings to you.
Paula
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Jayme,
Have you been offered Cell Cept or
Prednisone. I was diagnosed in 2015 with ILD and a biopsy in 2019 showed exposure to mold. So I started to need oxygen in 2019 but it is portable and comes in many forms. I was on Ofev for a short while but chose not to deal with side affects. I got enrolled in a drug trial
At my hospital University of Kansas Medical Center. This was a Stage 2 Trial with good results. Don’t give up. There are lots of resources out there. Get your oxygen levels tested. Best of luck. Paula -
I have recently started one generic anahistamine morning and night and my seasonal allergies are better under control. I still have some sinus drainage but don’t feel the energy drain like before. I am on daily dose of 10 mg of prednisone. In the fall I have found that upping that to 20 mg during the allergy season really helped. I live in Kansas City so have all the trees, grass, flower pollen issues. Good Luck everyone. Know how challenging it is.
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I use a walker with a seat on it and put my portable concentrator on the seat to move around in the house. I also use the walker to carry my laundry to the laundry room, trays to the kitchen etc. it really gives me a lot of confidence having it to help with the energy usage. I also try to use the wine bottle size oxygen bottles when I am out for a few hours because it is so much lighter to carry. Best of luck in your search for the right thing for you.
Paula -
I have not flown with a portable oxygen concentrator yet but I was making plans for a trip to Scotland. I have a Caire Freedom Style portable and use a setting of 2. When I talked to United Airlines they told me my machine was not on the approved FAA list even though I told her the machine has an FAA approved label on the bottom of the machine. I have read FAA guidelines and understand they do allow POC and made decision not to continue to upgrade list. What has been your experience with inspection of your machine and paperwork you need when you travel. Thanks so much. Pauls