October 23, 2018 at 10:13 pm #14947
Maintaining employment while living with pulmonary fibrosis (PF) is way easier said than done. There are so many compounding factors that patients must consider when thinking about their employment status, especially as their disease progresses. Unfortunately, I am very much immersed in this consideration and decision-making right now and it is really tough.
A wonderful columnist with Pulmonary Fibrosis News and fellow PF patient Kim Frederickson wrote a column about this recently and it has truly resonated with me. In her new column titled How to Decide When to Stop Working
not only did Kim give some tangible tools in the form of questions to consider when thinking about your employment with PF, but she also validated something for me that I know deep down. I am still working full-time, and I know this is compromising my health; potentially risking my disease to progress faster. She wrote that she knows she worked longer than she should have, and I know this is my case as well. That said, considering all my financial needs (I have debt from University and a Masters/post-graduate degree), I fear that it is not feasible for me to stop working right now.
That said, this column has given me a lot to think about and for anyone else who might be in a similar situation as me, I’d encourage you to read Kim’s column as well. It is especially difficult to make this decision when you love your career, like Kim did, and don’t want to give it up… this further complicates my current situation!
What is your current employment status while living with IPF/PF?
If you have stopped working, how did you decide on that and was it a difficult decision for you?
I’d love to hear from you!
October 25, 2018 at 8:13 pm #14998Rose M.Participant
I am retired. I stopped working in Oct. 2014, at the age of 63. I was a full time critical care nurse in a Cath Lab. My last year of work was part time, as I could no longer keep up working full time, nor could I keep up with the ‘on call’ schedule. I was always exhausted. I had an hour commute each way to work. It was a difficult decision as I loved my job. Retiring also made for a financial hardship for my husband and I.
I was diagnosed with IPF in 2013. It was found on a routine chest x-ray for a physical. My primary never notified me. I found out 5 months later in an appointment with my pulmonary doctor who followed me for my sleep apnea. I do not know how long before May 2013 the disease started.
One of the factors in deciding whether to work was I was afraid the disease could start to progress and I wanted some retirement time to enjoy my family and grandkids. I have been lucky and my disease has not progressed in over 5 years. I am not on any medication, not on oxygen, and I use a pulse oximeter to keep tract of my oxygen level. My baseline pulse ox is 92-94%. I live at an altitude of 4100 feet and many activities cause me shortness of breath, but I recover quickly.
October 26, 2018 at 7:59 am #15007
Welcome again to the PF forums and thanks so much for writing, to share a bit about your experience regarding this topic. It is such a hard one for me right now, as I am far from the age of retirement (I am 30) and love my job. With that said, I so appreciate hearing from others about this topic.
Sorry to hear about the financial hardship you endured as a result of being forced to retire from your disease. This is my greatest fear, as I have so much debt still from University and a post-graduate Masters’ Degree too. That said, like you, I am having a hard time keeping up with working full-time or I am doing so but pushing myself too much and risking my overall health I think. Your job sounds fascinating, I can only imagine how meaningful that role was to you.
That is such great news that the disease hasn’t progressed, and that your oxygen baseline is really in the 90s. I will keep my fingers crossed that this continues for you! Hope you are finding joy in your retirement with your grandkids 🙂
Feel free to reach out anytime, and thanks again for writing!
October 26, 2018 at 3:18 pm #15026Claudia SundbergParticipant
I retired in 2014 but was not diagnosed until 2018. However, before I got my diagnoses I went to work part time for an assisted living as a server in the dining room. My mother had been a resident there and had passed away and I really missed the residents there. So far I have been able to work with only minor fatigue although when I have needed to be out for the lung biopsy I had to prove to corporate that I could do the job. I even had to do that when I sprained my ankle! I need to keep myself busy so I don’t have too much time to dwell on the IPF and it puts into perspective for me that there are people that are worse off than I am. I am on Esbriet and have been able to manage the side effects quite well. I’m hoping to keep working for some time.
October 29, 2018 at 9:09 am #15053
Thanks so much for writing and contributing to this topic thread. As always, it is nice to hear from you!
Glad you’re able to still do some things that you love in terms of part-time work, it must be meaningful for you to still be part of the community where your Mom was. I will keep my fingers crossed that you’re also able to continue working; it sure does keep our mind busy and off of having IPF. Sounds like it is a great thing you’re still able to do! Thanks for sharing.
January 11, 2020 at 8:21 am #22482NanParticipant
Hi Charlene, I have decided that for the next 2 weeks at least, I am not going to work. I have reduced a few duties at work recently but I have a very stressful, demanding job. My sats are all over the place from 70s with activity 90s at rest. My resting heart rate is climbing at quite high. I watched a video from the OFF summit yesterday and a panel of docs was saying how dangerous constant fluctuations in sat and high resting heart rate are. Increase risk of PAH. This brought a big reality to me and I decided at least until seen at ILD clinic and get oxygen I am taking time off. This has been a hard decision but I feel at peace with it.
January 11, 2020 at 9:22 am #22483
Proud of you – this is such a hard decision, and one I haven’t had the courage to face yet. Unfortunately this latest illness/setback made the decision for me temporarily but I’m glad you made it for yourself, things feel a bit more in control that way. The PFF Summit presentations… a few of them actually… did highlight the importance of doing what we can as patients to eliminate the saturation fluctuations, so this was a good decision. Keep me posted on the ILD clinic appointment in Toronto, not long now. I’m glad it isn’t this weekend, stay safe in this brutal, ‘catastrophic’ ice storm they’re calling for us this weekend.
Talk to you soon,
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