May 22, 2019 at 9:04 am #19263Peg N Tom JohnsonParticipant
We are wondering about how to approach the subject of IPF with my huband’s job. There is no way he can use oxygen at his current job due to welding torches in the area. He is not old enough for Medicare so we have been trying to hang on for another year till he hits 65 and can at least qualify for it then.
Have any of you have any experience with telling yourjob and then being let go? I know he can apply for SSDI but then it is at least 1 year till he can get Medicare and our doctor is talking transplant already.
This disease is odd in that he can still go to work every day but is exhausted when he comes home so we have just not told anyone?
Any suggestions? Thanks in advance.
May 22, 2019 at 4:42 pm #19267MarianneParticipant
Peg N Tom Johnson –
When I sat down with my employer last September and told him my doctors suspected either IPF or NPIS he was completely supportive. He owns a small boutique law firm and I have worked with him as an office manager, legal assistant, legal secretary for the past 34 years. He was very supportive. We are friends as well as employer and employee. If needed I can work about 90% of my job remotely. So far I have been working full time while going to various doctors. I recently had a VATS lung biopsy. I have an appointment later this week with my pulmonary doctor. I know my boss will work with me in whatever way he can. I am old enough to retire as is my boss. Not sure how much longer I will continue to work. The original idea was to work until my boss decided to retire but he is older than me and I have no idea when he will retire. I am not going to sacrifice my health to continue working. I know at this stage I am in the early stages of my UIP – Usual Interstitial Pneumonia which was just diagnosed this week.
I have no idea what to tell to you approach this subject of IPF with your husband’s employer. Hopefully, someone else can perhaps answer your question better.
May 22, 2019 at 5:00 pm #19268Mark KoziolParticipant
Hello Marianne, thank you for your comments. I am sort of at a loss to answer the question myself. I was in a totally different atmosphere when I was diagnosed with ipf. I think your response was great. Hopefully for Peg and Tom, his company can make some accommodations. Best wishes to you all.
- This reply was modified 2 years, 4 months ago by Mark Koziol.
May 22, 2019 at 7:10 pm #19278Charlene MarshallKeymaster
Thank you for starting this topic thread, although so sorry to hear you’re facing this difficulty. I had a really hard time navigating this once I was diagnosed with IPF as well. While I work for an incredible company, sharing my diagnosis was hard. They were committed to “making accommodations for me”, however, there was one experience I had in 2017 where I had an exacerbation and couldn’t return to work for awhile. I was actually told that I may have exceeded the accommodations they could make. I could still do my job so I was incredibly hurt, and threatened to go to the labour board if they didn’t continue to support me. In hindsight, this was probably a little harsh, but I couldn’t (and still can’t!) afford to be without work so I was scared. Regarding your husband’s job, are there any other potential roles he could do as an accommodation, so he could stay with the company but not risk his (and others) safety? I’ve heard from others that thinking about how he can remain at work, but safely, is helpful to bring into a meeting about chronic illness and employment. In a way, it shows the employer that you’re committed to the job and want to work together for everyone’s benefit. Just a thought I had, although I unfortunately don’t have a lot of advice to give.
I haven’t been let go, and my work remains very accommodating, but I know others have. Just make sure if that happens (not saying it will) they’ve abided by proper rules/standards. As far I as understand (although the rules may differ here in Canada) they can’t let you go due to an illness. Does this help at all? Sorry I don’t have more I can share. I fully understand how exhausted he is at the end of the day! I’ve compromised doing things I want or need to in the evenings due to being too tired. It is hard.
Hang in there and feel free to write anytime.
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