Tips to Get Over the PH Diagnosis Hump

Colleen Steele avatar

by Colleen Steele |

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I enjoy hot peppermint mochas year-round. Going through the Starbucks drive-thru is my favorite daily routine and the only line I don’t mind waiting in. I use it as an opportunity to relax, pray, listen to music, scroll through my phone, read, or gaze out the window. The baristas at the local store have come to know me.

But sometimes, this routine makes my mind wander back to one of the most painful times of my life — when my son Cullen was diagnosed with idiopathic pulmonary arterial hypertension (IPAH).

The diagnosis was a life-altering experience for Cullen, our family, and me. I felt like a ghost walking among the living, just a shadow of who I used to be, now void of hopes and dreams.

At first, transitioning into the PH world was like entering a dark tunnel with no glimpse of light at the end. When I wasn’t fumbling my way through learning the new routine of caring for a critically ill child, I was on autopilot performing my “normal” activities — including trips to Starbucks.

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I felt lonely in a line I once looked forward to waiting in. Cullen’s PH diagnosis made me too sad to listen to music, too exhausted to read, and more times than I care to admit, too angry to pray.

Instead of gazing out the window at the weather and the passersby, I would stare at the bumper of the car in front of me. I dreaded moving forward, knowing I would have to fake a smile and pleasantries with the barista. Even the warmth of the mocha couldn’t soothe the emotional chill running through me.

There were ongoing psychological benefits to this routine, although I wasn’t aware of them at the time. I thought the reason I kept going was simply because I needed the caffeine fix. Besides being Cullen’s primary advocate and caregiver, I was also a loving wife to my husband, Brian, and a devoted mother to my other son, Aidan. And I continued to work a full-time job and maintain typical adult responsibilities.

The first few months after Cullen’s diagnosis were hard, but I noticed us doing more “living” with PH instead of just existing as time passed. I even started enjoying my Starbucks runs again.

New patients and caregivers often feel like they will never get over the PH diagnosis hump. From personal experience, I suggest the following.

Rely on support from the PH community

I can’t stress enough how valuable it is to join in-person or online support groups and build friendships within the PH community. Do it anyway, even if you feel you are too shy or private. You won’t regret the emotional support and information they provide. Feeling less alone is a big step in “living” with PH. The best way to do that is by advocating with others and making PHriends.

Share your PH journey with others in the Pulmonary Hypertension News Forums. Ask your doctor or social worker if they can connect you with other PH patients in your area. Maybe meet up at Starbucks and enjoy a cup of comfort together.

Don’t shy away from friends and family outside the PH community

They will never fully understand what you are going through, but that doesn’t mean they don’t have ways to support you. If nothing else, they can offer a few moments of normalcy that you may be missing after a PH diagnosis.

Have you ever met up with an old friend and felt like no time had passed? Just because life took you in different directions doesn’t mean you can’t still enjoy each other’s company. Don’t assume that PH will keep you from experiencing that again.

Try to maintain what you can of your pre-PH routine

Even if it is a simple trip to Starbucks every day, sticking with something familiar can sometimes lead you back to other things you once enjoyed.

For example, I gradually started listening to music again and found peace in quiet so that I could pray. Starbucks was a familiar place to escape to, even during Cullen’s hospitalizations. In fact, this routine transformed into a happy tradition that has helped us through the challenges of Cullen’s PH and now his post-transplant journey.

I’ve heard it said that the secret to your success is hidden in your daily routine. I hope the one you follow will help you as mine helped me get through the dark days of my son’s PH diagnosis.

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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