Turning the Tables on Caregiving

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by Colleen Steele |

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I will turn 50 in October, and I have ignored worsening symptoms alerting me to a possible health concern for many years. I finally decided it was time to face what I was avoiding and schedule a doctor-recommended upper GI endoscopy and colonoscopy.

As the anesthesiologist was preparing to put me under for the procedures, he asked me, “What do you do for fun?” To his surprise, I blurted out, “I am a Pulmonary Hypertension News columnist and forums moderator.” I think I was as amused as he was that it was my job that came to mind without hesitation.

PH and rare diseases are no joke, but the people I work with at BioNews, this website’s parent company, really make my job fun. We put forth a tremendous effort to advocate for rare diseases, but we also share many laughs and aspects of our lives that make us happy.

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Even so, I can understand how my response must have sounded odd. As I watched the medical staff prepare for my procedures, I explained that my thoughts were on PH, transplant, and all that my son Cullen has endured because of them.

The pace of the room seemed to slow down as I shared Cullen’s diagnosis of idiopathic PH and how its progression led to a heart and double-lung transplant at 14.

The anesthesiologist admitted he thought PH was a disease diagnosed primarily in middle-aged women or older. I explained that this lack of PH awareness is an example of why my son, like so many others, went misdiagnosed for several years.

A nurse stopped what she was doing to ask, “How old was your son when he was diagnosed with PH?” When I answered, “8 years old,” she truly appeared dumbfounded.

The next thing I remember, I was waking from anesthesia and recalling that conversation. My mind wandered to the dark side for a moment. If something had gone horribly wrong, I might have literally died advocating for PH. I couldn’t help but roll my eyes and grin at the thought.

Moments later, while still feeling the effects of anesthesia, I inappropriately giggled when a nurse instructed me to relax when I returned home and that I was not to take care of anyone else but me. I think she was taken aback by my smile and response, “I don’t think I know how to do that!”

Cullen came to the appointment with me and supportively waited for an update and my release. His brother, Aidan, also quick to help his mom out, left work early to drive us both home.

Aidan was thinking about a flight out of state he had planned for the following night. When he innocently asked if I could help with a few things before his trip, I started laughing yet again. I proudly told him it would have to wait for the next day as I had doctor’s orders to take it easy. I wish the nurse were there to hear my response.

As I anxiously waited for the results from my procedure, I prayed they would reveal a reason for my symptoms that wasn’t life-threatening. My prayers were answered.

Examination of a small colon tissue sample revealed I have a rare condition called lymphocytic colitis. It would have gone undiagnosed if I hadn’t practiced what I preach by being upfront about my symptoms and proceeding with the recommended colonoscopy.

I went into caregiver mode for myself and started reading about my condition. For my follow-up with the doctor, I’ll prepare a list of questions about foods and over-the-counter medications I should avoid and treatments that might help.

This column topic is unpleasant and embarrassing, but since Cullen is such a trooper about sharing all aspects of his health journey, I decided I can and should, too.

Caregivers, don’t neglect taking care of yourself. Make the appointments, schedule the procedures, and advocate for yourself as you would for your loved ones. Allow yourself a laugh or two at how awkward it might feel when the tables are turned, but don’t make light of the self-care instructions recommended by your medical team.

If you are told to rest and take care of yourself for a while — do it. When family and friends offer their support — accept it.

You are as important as those you care for.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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