Viewing 5 reply threads
  • Author
    • #31830
      Colleen Steele

      Many of you in the PH community might have known or at least heard of Dr. Sean Whyman. Sean was diagnosed with PH at the age of 19. He spent 2 years thinking he would die soon and when he didn’t, he focused on his education right into medical school.

      In all honesty, I don’t know how he did it except that I’m sure it took time and patience. But it had to be challenging. I’m in awe of what he accomplished.

      Sadly, we lost Sean to PH several years ago. In my recent column I interview his mother, Evan White. She shares not just Sean’s journey with PH, but also hers, as his mother and caregiver. I hope you will take a moment to read it and reflect on your thoughts here.

      A Mother Shares How Her Son Didn’t Let PH Box Him In

    • #31843
      Jen Cueva

      I am fortunate that I became PHriends of this awesome young man. Sean was certainly one of a kind and never stopped giving up on his dreams of becoming a doctor.

      , you did an exceptional job on your interview with his amazing mom, Evan. Telling Sean’s story is important as he was such a huge part of many of our lives.

      I don’t know how he did this all while managing his PH. His persistence and passion continue to inspire me.

      Thank you for sharing this and doing such a great job.

    • #31868
      Roger Bliss

      That was a good article. The theme is never give up…..I like that. While he did give up for a couple of years, he kept pushing himself after. That’s a good thing

      No matter what they tell you, live your life like you are going to live forever. Live life to the fullest, the best you can. If they tell you you only have so long to live…….it’s your job to prove them wrong like Sean did. So many people just give up.

      When I was young I was on the wild reckless side of the spectrum. My mother swore I paid for the local doctors motor home from all the visits I made from being busted up. When I was 16 the doctor bet me $100 I wouldn’t live to be 18 if I didn’t cool it. Naturally I didn’t cool it. When I was 18 I went to collect on the bet. He bet me double or nothing I wouldn’t make it to 21. The doctor died before I turned 21….he was only 45 at the time. He died from all the stress he was under from working too much/hard….his chain smoking probably didn’t help him much either.

    • #35794
      Jen Cueva

      Hey @wheeldog, how are you doing? How’s work going for you? Are you still feeling pretty good?

      I also wanted to check in on a few I know are working and dealing with PH. How are y’all managing, @dawnt, @jenniferbeaty, and @traceyaustralianmigration-co-za?

      Is anyone else working and trying to balance PH? We would love to hear from you, too.

    • #35796

      Hi, @jenc. I’m doing well with working. In August, one of our busy months, our team was in office every day. Now we’re back to our hybrid schedule with 2 days at home, 3 in office.  We were recently told that we’ll be able to continue our hybrid schedule indefinitely, as long as we fulfill our duties. I was so hoping that would be possible, and it’s a great relief. I love being home with my two doggy boys!


      • #35799
        Jen Cueva

        Hi @dawnt, how did you manage to get into the office daily in August? I bet you and the boys are so excited you’re back on that hybrid schedule- keeping it indefinitely is incredible, and I know the best for you and the boys.

        I can imagine getting up each morning, getting dressed, getting the boys out and back in, and driving to and back home after a busy day was challenging. Did you notice any changes in your PH symptoms?

        Thanks for your update and for sharing your experience with us. Did I already ask you what you do for work? I can’t recall.

        Have a great new week and take care of yourself- hugs.

    • #35837

      @jenc, I probably should have worded things a bit differently. During August our team was in office every weekday.  We still had our weekends off. I work at Penn State University, in the Bursar’s office. Our team handles all tuition bill payments, reconciliation, refunds, account maintenance etc.  I will admit that I was dragging going in 5 days in a row.  Those two days at home give me a rest, and I don’t have to worry about getting tanks refilled so I have enough for the week and then Saturday at the farm. The biggest difference I noticed, beside missing my boys horribly, was my level of exhaustion. So many days I didn’t want to get out of bed. I’ve also noticed since I’ve been back at work that although I have ‘off’ days with the breathing that I notice at home as well (and use my concentrator those days) with more moving during my days at work I’ve been surprised how much more I feel the impact of my breathing being ‘off’. It makes sense, with more walking into/out of the building, getting to my office, getting things done throughout the day, but it’s been very noticeable to me.

      • #35848
        Jen Cueva

        Hi @dawnt, that makes perfect sense to me. You push your body more as you get up, dressed, out the door, into the building, etc. If this were me, I would certainly notice a difference in my shortness of breath.

        At home, I’m sitting, and our condo is pretty small. So, even days when I go to the lab, etc. I notice I’m struggling more, even while wearing oxygen. I know I would not adjust to getting up and into an office to work five days per week. So, kudos to you for August. I bet it was a long month for you- and the boys.

        Yay for using your concentrator when you feel like your breathing is “off.”

        I am guessing each August is a busy time for you and your team to prepare for a new school year. Thanks for sharing more about your work at Penn State with us. I don’t think you shared that before. That’s a lot of paperwork and time-consuming, I would assume.

        Keep listening to your body and take care of yourself, my PHriend.

Viewing 5 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account