Joy Hunton
Forum Replies Created
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Well, we’re from Florida and travel in our RV. My husband was diagnosed with IPF in 2020 and didn’t need oxygen until visiting Denver at 5500’ elevation. When we returned to lower elevation he didn’t need oxygen anymore. His IPF has progressed and now he needs it all the time but mostly upon exertion.
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I’d like to reply but want you to know, I recently googled my name and a previous submission on this site came up and was not private so I hesitate to provide detailed private information. I deleted those submissions and will do so with this in a few days. Yes, I applied for my husband who was diagnosed with IPF in 2021 and already retired from the fire dept. I don’t recall it being overly difficult, just followed all the instructions. Since IPF is considered a compassionate allowance, he was approved fairly quickly.
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My husband was on Tyvaso nebulizer since January 2022 and switched to DPI (powder form) January 2023 so just about 3 months ago. This is to treat his Pulmonary Arterial Hypertension and on OFEV to treat IPF diagnosed about 2 years ago. He coughs more on the powder form, but prefers it to the other due to its convenience.
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PFT – Pulmonary Function Test
FVC – Forced Vital Capacity and all the other PFT acronyms
6MW – 6 Minute Walk
POC – Portable Oxygen Concentrator
PAH or PH – Pulmonary Arterial Hypertension
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Hi, Robert. My husband was diagnosed out of the blue last year and yes, there’s so much to learn as you go. I have found most of my information from PFWarriors.com and they’re corresponding Facebook Group. They hold regular Zoom webinars with doctors and they recently had one explaining how to read a PFT report (may be on the website to view). Free to join BTW. What I have learned is…they will use PFT and 6 minute walk test to monitor progression. Be sure to ask about Acute Exacerbations which I intend to do at his appt this month. We’ve seen his pulmonologist several times and she’s never mentioned this. An AE is a sudden decline in lung function and no one know what causes it but typically some type of infection. If you have a large decline in lung function they’ll redo a CT scan but they don’t use them to monitor progression (at least not at UF Health in Gainesville). The other HUGEly misunderstood item is Portable Oxygen Concentrators. My husband has recently been prescribed O2 for exercise and I learned the settings on the unit are NOT liters per minute of oxygen being given. Be sure to look at the specifications of each unit to determine it offers enough lpm for your needs. Unbelievably, I just informed another doctor about this and she was completely shocked..even disagreed with me at first until she googled it while on the phone. She said she had patients on a setting of 2 thinking they were getting 2 lpm and needed to get with her patients. Even the O2 company that brought in the machines set the POC on a setting of 2 and told me that’s what he needed for 2lpm. Turns out on its highest setting of 5, the unit only provides a maximum of 1.05 lpm. I hope some of this helps, still in the learning stages ourselves. That PF Warriors site and FB group though would be my biggest suggestion for education.