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Let’s keep the discussion rolling during National Disability Employment Awareness Month! My mom only worked for about three months after her official diagnosis with IPF. It became apparent quite quickly that she could not continue doing her job as a clinical laboratory scientist when she began taking OFEV and using portable oxygen at work. Her employers did what they could to accommodate her–like allowing her to take an hour each day to attend pulmonary rehabilitation at the hospital where she worked–but ultimately it was too hard to balance her personal needs with her professional ones. She retired on disability about a year before her planned retirement date.
Some challenges she faced that made it hard to work were:
1. Dealing with side effects from OFEV at work. She felt terrible for about an hour after taking the medication, which made it hard to focus on work.
2. Overheating while wearing a waterproof labcoat along with her portable oxygen concentrator (the battery generated heat)
3. Not having a place (like a tabletop or on the floor) to safely store her POC other than in a backpack, since she was working with fragile equipment and sterile samples.If you were/are still working with PF, how has your workplace been able to accommodate your needs? Are there any ways in which they’ve fallen short of supporting you? Has COVID changed anything in regard to your workplace accommodations?
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