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    • #27272
      Colleen Steele

      There are people who make a great effort to keep their work life and personal life separate. When my son was diagnosed with PH I found this impossible to do. My personal life was always at work with me because my son’s health concerns followed me everywhere. I often had to leave early to take him to appointments and miss work when he was admitted to the hospital. Many times I felt so fatigued while working after being up all night caring for my son and I’m sure it was noticeable whenever I was feeling worried and anxious about his condition. I had to let co-workers in on what was happening in my personal life. There was just no way around it.

      Have you been able to separate work and your personal life or has PH and co-existing conditions made that difficult for you to do? How are you managing and how do your co-workers react to the personal things you share with them?

    • #27278
      Jen Cueva

      This is an important topic, @colleensteele. I can only imagine how much Cullen’s PH, transplant, and all that comes with both interfered with your work life. Did you work outside the home post-transplant? I know Manny’s job is aware of my PH and his bosses and colleagues often stop to visit when I am in the hospital. They have been amazing and offer him the time to be off and help us in any way that they can. I am humbled.

      I don’t think some companies fully grasp how difficult being a caregiver is. Often, the caregiver is more stressed than the patient.

      Mainly those were working outside the home and trying to stay healthy, too. I am guessing that with the pandemic, this has been more of an issue. I know that employers are not supposed to ask about health issues. But how many of you who are working offer updates and your health concerns with those at work?

      I am grateful that the work I do here and with my column, BioNews, is unusually understanding about health issues and taking time for appointments, etc. It helps that the company is focused on those within the rare disease communities, Like PH. I am fortunate and grateful to work for them at home.

    • #27284
      Colleen Steele

      @jenc I feel exhausted when I look back on how I worked full-time during Cullen’s PH years. Maybe it’s because I’m older now and have forgotten the energy I had in my younger days. I worked for the Catholic church so compassion and understanding was plenty. But still, I often felt guilty when I had to leave work early or take days off to care for Cullen.

      I did not work post-transplant until last year when BioNews employed me. It’s been a perfect fit creatively, emotionally and medically. I am so glad you joined this amazing team!

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