Tips for PH Parents: How to Take the PHright Out of Date Night

PH parents are busy people. Making time for each other isn’t easy, and neither is trusting someone to care for their medically frail child when they do.

My husband, Brian, and I have been married for 27 years, and we raised two sons, Aidan, 21, and Cullen, 22. Cullen was 8 when he was diagnosed with pulmonary hypertension (PH), and his treatment included continuous intravenous Flolan (epoprostenol GM). Flolan greatly improved his quality of life, but it required constant vigilance and put limitations on Cullen’s and our lives.

Now that our sons are grown, and since Cullen received a heart and double-lung transplant in 2014, we’re long past the date night struggles, but I remember them well.

Brian and I were the only ones who knew how to mix the Flolan, change the cartridge, and program the CADD-Legacy ambulatory infusion pump that fed the medication through a central venous catheter. If Cullen’s pump alarm went off, he knew how to check for and correct minor problems and restart the pump. But he needed us for anything more complicated than a kink in the central line. Leaving Cullen with anyone else so we could go on a date night was worrisome.

Did we still manage date nights and enjoy them? Yes, and following is how we pulled them off.

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We began with acceptance

Cullen differed from his peers because of the physical limitations of PH. He needed to accept this, but he didn’t have to give in to it. Finding activities he could participate in with understanding friends helped him realize that although his life was different, he could still enjoy it.

As PH parents, Brian and I had to accept that we needed to approach our social life in much the same way. We were different from other couples because, just like Cullen, we had limitations.

Leaving our children with a young sitter was not an option. Wherever we went, it had to be nearby so we could return home quickly if there was an emergency. Most important, we had to be back in time to change Cullen’s Flolan cartridge before bedtime and mix his medicine for the next day.

We accepted this and worked around it by doing something many couples would not consider a date.

We took our children with us

I know, the whole idea of date night is that you go somewhere without the kids, but remember, our lives were different.

We jumped at any opportunity that would allow us to take our children, but still feel like we were on a fun date night. It required changing the way we looked at certain events.

Going anywhere to socialize with other adults was a date night for us. When invited to barbecues and parties and told to bring the kids, we went. Cullen and Aidan would have fun with the other children in attendance, while Brian and I, finally feeling safe enough to relax, would have the best time with our friends. We even took turns being the designated driver, so one of us could enjoy a few alcoholic beverages.

Church events were also an excellent way to get out as a couple and bring the boys. For example, our parish holds a marriage celebration dinner and dance around Valentine’s Day every year, and they offer child care on site. I can’t ‌tell you how nice it was to get dressed up, go out with my husband, and have my children safely nearby.

Parish bulletins aren’t meant to be your receipt to prove that you attend Mass on the weekend. Open and read it! You might find your next date night.

We talked about the kids

Sometimes we left the boys with their grandparents or trusted friends and went to dinner at a nearby restaurant. When we did, we broke another “normal” dating rule.

We talked about the kids.

There isn’t always time or privacy for PH parents to discuss concerns, so we often discussed them over dinner dates. We’d also share how we were each holding up emotionally because emotional intimacy is crucial to a relationship.

We expected the unexpected

One evening, my parents offered to watch their grandchildren while Brian and I went to dinner at a restaurant around the corner. My mom called just as they brought our meals, and I could hear Cullen’s pump alarm going off. He couldn’t get it to stop.

We quickly paid for our meals, asked the server to box them, and hurried out the door. The pump had a major malfunction that required us to switch to the backup.

Once the chaos calmed down, we heated our meals in the microwave, cuddled up on the sofa, and watched a movie. And you know what? That was just as nice as a dinner out.

I leave you with food for thought from American college basketball coach John Wooden: “Things turn out best for the people who make the best of the way things turn out.”

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.