30 Days of PH: My Vantage Point as PH Mom and Registered Nurse
Day 26 of 30
The first time I heard the words “pulmonary hypertension” (PH), I was sitting next to my son’s hospital bed after his first open-heart surgery. I had no idea what it meant for him, except that the pressures in his heart were high and the doctors were very concerned.
Through the years, I got to know and understand what PH meant to my son and my family. Simple things like getting dehydrated would send him into a PH crisis. But giving him too many fluids would make his heart failure worse. It was always a balancing act.
My son’s PH is secondary to his primary diagnosis of pulmonary vein stenosis — two very progressive and often fatal conditions. I did all I could to learn about them to help keep my son here with us as long as possible, as we were told by several medical professionals that the combination of these illnesses was nearly impossible to survive.
I asked so many questions and learned all I could. I brought ideas to his medical team. They tried things they didn’t think would work … but they did! My son has been stable for two and a half years.
My son’s nurses were a big part of me finding my voice and made those rough years bearable. Because of them, I decided to become a nurse. I wanted not only to learn more about my son’s conditions, but also to support and care for other families like mine.
I graduated in May, took my boards in July, and just accepted a registered nursing position at the same hospital and on the same floor where my son (and I) had spent so many nights. I now will be able to make my dream a reality and treat other children with PH and heart conditions.
With a unique perspective of knowing exactly what the families are going through, I hope to be helpful and change a few lives along the way.
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.