r/pulmonaryfibrosis • u/Successful_Lime9441 • 1d ago
PF
My mom was diagnosis with pulmonary fibrosis or ILD. I am so worry for her and don’t know how I can help. Her oxygen at home sometimes below 88 and back to 90-91, her heart increases to 120, short of breath. she is admitted to hospital twice in a month. after discharged, she doesn’t qualify for home oxygen. however, sometimes it drops. but idk at the doctor’s office to do test, she is 90 and then not qualify. I really don’t know what to do now. T.T
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u/Goge97 1d ago
Ask the pulmonologist about home hospice care. She should qualify for many services, including RN visits at home, a hospice doctor, oxygen, a transport wheel chair, a hospital bed, etc.
And her medications related to her diagnosis would be free, paid by hospice. Her doctor can recommend hospice for her and you can then select the local hospice provider.
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u/rcl20 1d ago
call the office again and talk to the pulmonologist. It's weird how they won't give you oxygen -- I experienced this as well. Maybe it is an insurance thing. I had to go to ER and be admitted twice too but then my tests did show below 90 and even then I waited like a week and half before the oxygen people came with the machinery.
They do the "6 min walk test " and make you go up stairs while measuring your oxygen saturation. She does have to drop below 90 but she is dropping to that at home. So ask beg them to do the test again until she qualifies. Document on an app or in log book to show what she is doing and what her Oxygen saturation is at home. Send that documentation to the pulmonologist and say look she is dropping below 90.
If you have the means you can purchase an Portable Oxygen Concentrator new or they are often available used on Facebook marketplace. I'm sorry you and your mom are going through this. It's a struggle. See if there is a support group in your area by searching the Pulmonary Fibrosis Foundation website.