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    • #32249
      Colleen Steele
      Keymaster

      I selected this forum for this topic because we should all be aware that being a patient doesn’t mean you aren’t at times also a caregiver. It is possible to advocate for yourself and someone else.

      @jenniferbeaty is one of our forum members who has PH and has taken care of her mother and her aunt. I interviewed her in this week’s column. She was kind enough to share her experience and how she has managed it all.

      I hope you will take a moment to read and respond to what Jennifer has shared.

      What has your experience been as both a PH patient and a caregiver to someone else?

      You can read the column by clicking on the link below.

      https://pulmonaryhypertensionnews.com/2021/10/25/doing-double-duty-both-patient-caregiver/

    • #32275
      Jen Cueva
      Keymaster

      Thank you both @colleensteele and @jenniferbeaty. This has me in tears, chills, and smiling at once. Wow, I a sorry that you have been through so much, Jennifer. Being a caregiver while managing your PH is challenging.

      I must say that I have been waiting to read this but was hoping for good news. For me, knowing you learned to say NO, was a huge positive.

      As a nurse, I have always been the caregiver in my family to all. I often felt guilty when I put myself above others, especially my husband, daughter, and parents. Just last year, I was still calling in meds for my patients (3 at that time), calling their doctors for them, and many other tasks that a caregiver does. This has been challenging as many days, like you, I feel out and cry.

      You can do minor tasks, but you must put yourself FIRST! This did not stop after my medical team told me to decrease stress and put my health first on multiple occasions. I was going until my body gave out. So, I am grateful to learn about your boundaries, Jennifer.

      Your mom may have been your first advocate, but it sounds like you do a fantastic job at advocating for yourself. If not, as you said, you may not be here, I am grateful.

      I hope that you know how much these interviews help so many of us in the PH community, @colleensteele. Another exceptional column that I hope many others will read.

      We can be caregivers and do simple tasks, but we must ensure that our health is the priority. As Colleen knows too well, caregivers are often at the bottom of their list.

      Such an important topic; thanks again, ladies.

    • #32277
      Jennifer Beaty
      Participant

      Thank you Jen Cueva for your kind words. If my story (thank you @colleensteele) helps just one person, then the experience was worth it.

      • #32294
        Jen Cueva
        Keymaster

        Hi @jenniferbeaty, I can assure you that this will help more people than you could even imagine. Thanks again for sharing your journey.

        I hope you are taking care of yourself and doing well as expected this new week and month.

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