30 Days of PH: ‘Never Let Your Story End Where Your PH Journey Begins’

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by BNS Staff |

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Photo courtesy of Kathy Groebner

Day 17 of 30

This is Kathy Groebner’s (@momma_g4) story:

In 2008, after five years of searching for a diagnosis, I was told that my daughter, Katie Grace, had pulmonary hypertension (PH).

I’d thought all along that it was her heart, but no one was listening. Back then, neither I nor many doctors had ever heard of PH. Looking up things on Google wasn’t an option and Facebook support groups didn’t exist.

Being young and spontaneous, Katie Grace became well-known in the PH community. She was diagnosed the day before Valentine’s Day. By March, she was one of a handful of children starting a new medication, Remodulin via CAD Broviac pump.

People were just learning then that it’s not only adults who are diagnosed with PH. Treatments have come a long way, and there’s a lot more support now for patients and their families.

Katie Grace knew her time here on earth might be short, so she lived life to the fullest — and encouraged others to do the same. Her wonderful doctor cared about her physical health and emotional well-being and intently listened to her stories, even when she did things he’d recommended she not do.

While Katie Grace died at 13 after complications from a heart and double-lung transplant, her story did not end there. People still talk about things she said or did to give them courage and make them laugh.

She always wanted to help people she believed had it worse than she did. Pretty deep for a child, but that is how she thought and lived, with her friends and sister by her side. Her determination and willingness to live were stronger than that of most adults.

The way she lived reminds us to laugh and find joy even when we think we can’t. Live life to the fullest because we never know about tomorrow. Love people even when they make you mad. If you can do these things, then there will never be an end to your story.

If she were here today, Katie Grace would say “Never let your story end where your PH journey begins.”

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.