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    • #22850

      Many of us strive to hang onto the parts of our lives outside of our idiopathic pulmonary fibrosis (IPF) diagnosis because it helps us remember that we’re more than a “chronically-ill patient”. Or at least, this is how I feel. I want the other aspects of my identity to shine through, and never want to be defined as the young adult who is sick with a fatal lung disease. I recently wrote a column on who I am outside of IPF and it is really important that these other identities remain intact while I battle IPF.

      One of those identities is “colleague”, and I am privileged to enjoy my career role which involves helping families through difficult times. Sadly, working full-time was getting difficult before I recently fell ill with pneumonia, influenza and strep throat. Right now it is impossible, and I’m not working as I continue to recover so it feels like an important part of my identity is missing.

      Knowing when to stop working with a chronic illness is a struggle that many of us share. I’ve heard it discussed on the forums before, and I don’t know what the right answer is as to when to stop working. There are many things to consider when thinking about this: financial stability, mental stimulation, social aspects of working as part of a team and routine. For me, none of these are easy to let go of. I recently read an article on TheMighty about ceasing to work as a patient who is chronically ill and wanted to share it with our forums community.

      What were some of the factors that helped you decide it was time to stop working full-time?

      Was that decision difficult for you? If so, what made it easier?

    • #22889

      This is a very interesting topic for me since I am still working full time.   I love my job teaching electronics for the Navy and so far I have been able to tolerate being tired when I come home and the loss of breath when I go from the car to the second deck and back to the car at the end of the day.

      I have my portable oxygen with me when I am at work, however since I work with electronics and all, I can’t wear it in the lab.  I have compensated by not roaming around the lab and classroom as much as I used to and I try and slow down my delivery while teaching.

      The folks I work with are great.  They get on my case when I do something dumb like carry test equipment around or try and lift stuff.

      I know it won’t last forever though and I think knowing that I have to get up in the morning a have those responsibilities actually helps me fight this disease.

      My doctor is very happy with me.  We just got all my comparison results from all the tests when I was diagnosed about 7 or 8 months ago and results from the last couple of weeks and the disease has not progressed.

      I just constantly have the thought in the back of my mind, that some day I will have to hang it up.  Before this disease came along I thought I would be phased out due to changing technology, but I have kept up to date with the advancements in technology and can teach some of the new systems as well as the old ones.

      Now I just fear either catching something from a student or even my grand children that might set me back.

      I guess all I can do is keep right with the lord and follow the doctors directions.

    • #22890
      Mark Koziol
      Keymaster

      Hello Randy, thank you for sharing you for experience. It is always nice when you can have an occupation you love. In the future you may have to make some modifications but that is ok. I was on 8 lpm when I had to walk and I would still have coughing episodes. My insurance company  purchased an electric chair for me that I could use for work. It was wonderful. I worked up until the day I received the call for transplant. It was important for me to keep working because it took my mind off my disease. I also had a lot of assistance from my colleagues. They were wonderful and still are. I can no longer work in education because I would put myself in a predicament because of my low immune system. Randy, stay active and do what you feel you need to do. It sounds like you have great colleagues, don’t be afraid to ask for help when you need it. Take care, mark.

    • #22929
      Sara Tanner
      Participant

      Thank you so much for this post about you continuing to work! My husband has improved greatly after hospitalization with a bad bout of pneumonia & shocking diagnosis of IPF while there. This was 4 1/2 months ago. He had been working full time & wasn’t ready for retirement, but was forced to due to 02 dependency after being released. He now can go hours without 02 at rest. We are in the process of trying to get poc & he is determined to go back to work at least part time. This will give him Hope as we haven’t heard of anyone still working with 02 dependency!!

    • #22945
      Virginia Currie
      Participant

      I am still not fully diagnosed of IPF but I was debilitated by the thought of it.  My MD is trying to differentiate IPF with hypersensitivity pneumonitis.
      I am sad because it seems like nobody cares at work.  Thank God I take Neurontin to stop the chronic cough, otherwise, I will be forced to leave work.
      I need to work to support myself and be able to afford the medical insurance.  Not having a belief in God,  I will not able to stand this curse bestowed on me.  I am trying to be as strong as I can so I can be productive.  All I need to do is to be positive and rely on Jesus that HE will not forsake me.  My faith keeps me on.

    • #22968
      Mark Koziol
      Keymaster

      Hello Virginia, I am sorry to hear your colleagues are not giving you support when you need it most. After your diagnosis you will be considered disabled. Hopefully your employer will be able to modify your work to help you with your disease. If they have the ability to do this, then they are bound by ADA law to accommodate your disability. Take care, mark

    • #22987

      @wifeofipfpatient

      Hi Sara,

      Thanks so much for writing and contributing your thoughts on this topic – it is a really tough one for me, so I appreciate hearing from others! It is also so reassuring to hear your husband is recovering well since pneumonia and reducing his oxygen dependency. I’m really hoping I can do this as well. His story of returning to work gives me hope, many thanks for sharing and wishing you both nothing but the very best.
      Charlene.

    • #22993
      Nan
      Participant

      I too have not had a full diagnosis yet, well I have but they now are not sure lol so I wait and have tests. I was off for 3 weeks from work because of the SOB. I was bored. I had a meeting with HR, union and management. They were wonderful and we came up with a plan for me and for them as I can still be productive. They gave me a desk job, a parking spot on main level and let me lie down if I get tired ( haven’t had to do that yet). The coughing is a pain and sometimes co worker will say something like ” you are coughing a lot today” but they are very supportive. I hope it is not too annoying for them. I am very happy because I like this desk job they gave me and it is good for me to go to the office rather than be a home all day bored and doing way too much googling!

    • #22995

      Hi Nan,

       

      I am so happy to hear that your employer is accommodating of your needs for modified work. This is so important, and many agencies don’t do this with a willingness to help their employee. Glad you can still be in the office and contributing to a sense of accomplishment, though I know the role is different than before. Thanks for writing and sharing your experience with this topic – it is a tough one for me to navigate, especially as I continue to recover and am uncertain about what my return-to-work plan will be.
      Charlene.

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