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  • Experiencing Caregiving as a Patient

    Posted by Kathleen Sheffer on September 19, 2018 at 11:38 am

    One of my friends with pulmonary hypertension, who I have known for 18 years, recently had a heart-lung transplant at Stanford Medical Center, where I had mine just over two years ago. There were major complications during her surgery and she continues to have setbacks during her ongoing hospitalization. Last week, she was doing well enough that I was able to visit her.

    My friend was a huge support to me me when I first went on the transplant list. So, it has been a gift to be able to support her on her journey. However, it was not easy to visit her in the hospital. She was in the same unit I stayed in after my operation, and she is experiencing many of the same challenges I did. The recovery period was the most difficult, painful, and anxious period of my life. It’s the experience I reflect on whenever I face a challenge because nothing compares.

    Visiting her brought me right back to that experience and it breaks my heart to see her in the same pain. We both have faith that she will continue to improve and go on to lead a rich and healthy life, but that doesn’t make this period any easier. I didn’t have words to make it better. I could only tell her that this is normal.

    Have you ever been in the position of trying to comfort someone who is more sick than you are? It’s very odd for me to visit someone else in the hospital. Role reversal! I am far more comfortable playing the role of the patient, because I’m used to it.

    How do you protect yourself while you try to help your friend? I felt emotionally drained when I left the hospital, memories of my time there flooding back to me. I want to be strong and helpful to my friend, but I ended up using a lot of my energy doing so. I’m not even sure if I was successful. Have you ever had a similar experience? What advice do you give friends in difficult medical situations? Or do you prefer to remove yourself from those environments and focus on taking care of yourself?

    I’m curious what experiences you have had in a caregiving role, as well as in the patient role. How have friends been helpful to you? When I visited, I tried to think of all the best gifts I had received while hospitalized so I could bring a care package of useful items. I included hand wipes and tissues for practical purposes, as well as a neck pillow to help with sleeping in a hospital bed. I gave her colored pencils and a sketchbook, because I found drawing calmed me down. Everyone’s experience is different, but I hope I was able to help her a bit because of mine.

    Caring for friends in similar situations helps me make some sense of the challenges I’ve experienced. Because I survived them, I can now help others. Do you feel the same way?

    Kathleen Sheffer replied 5 years, 7 months ago 1 Member · 0 Replies
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