Why our PH journey reminds me of Mother, May I?

PH care and support is a family affair

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by Karen Schultz |

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Having or caring for someone with pulmonary arterial hypertension (PAH) can feel like the childhood game Mother, May I?

The game starts with each participant standing shoulder to shoulder. A designated “mother” arbitrarily calls on a child with orders for movement or action. Before moving, the child must ask permission by reciting, “Mother, may I?” The mother replies with either, “Yes, you may” or “No, you may not.” The participant then hops, cartwheels, baby steps, or twirls with the hope of advancing to the finish line.

When playing as a child, I always felt reassured when another player forgot to ask, “Mother, may I?” and went back to the starting point. I was no longer alone. Commiserating with someone in the same boat can be a huge relief.

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The weight of a diagnosis

My husband, Tim, began treatment for PAH with an IV medication called Flolan (epoprostenol GM). To maintain eligibility for the treatment, he required a central line, or central venous catheter, and a dedicated area of the house to store medication supplies. He also needed to take responsibility for the preparation and maintenance of Flolan. Once those requirements were met, the learning process began for mixing the medication each day, injecting it into a cassette, and attaching it to a pump. He also required a backup mixer who could demonstrate mixing and attaching the medication in case of an emergency.

As a caregiver taking on this responsibility, I maintained my proficiency by mixing every other night. Connecting the medication to a central line without interruption is vital because the half-life of Flolan is three minutes. Failing to reconnect to a fresh batch of medication in a strict time frame can be fatal.

Flolan also must be kept cold to maintain the medication’s stability. This requires the patient to wear a fanny pack with ice packs on each side of the medication cassette to keep the medication cold.

Beginning this strange new routine feels a lot like Mother, May I? — taking great care not to mess up while moving one frog leap forward, doing two twirls, and following strict instructions. Now don’t mess up or you may die.

The importance of participating

We decided that for Tim’s treatment regimen to be successful, it needed to be a family affair. Instead of leaving Tim isolated and fearful of facing this new lifestyle alone, the approach I led was for everyone to treat the responsibility as their own as much as they could.

I trained our children to mix supplies and store the monthly supply orders. Each night we sat around the table after dinner and talked while Tim or I mixed his medication. Tim often let one of the children pretend along as he performed a central line dressing change with a recycled or damaged kit. Afterward, our family could enjoy time outside, playing games together or passing the time alone.

I emphasized to our children the importance of participating in this routine. Each played a part in keeping Tim feeling emotionally supported during such an uncertain time. As extended family joined in meals and our unique after-dinner routine, they too learned more about PH.

Tim’s limitations taught our family to focus on creative ways to maintain a level of normalcy in our lives. As an Eagle Scout, Tim always enjoyed weekend camping and hiking trips. Substituting short day walks to Julian Price Memorial Park in the North Carolina mountains and backyard camping were ways to maintain his love of the outdoors.

Today, we drive to campsites on overnight trips and utilize a portable power station for his CPAP machine and nighttime oxygen requirements. Yet, we no longer have the restrictions of a medication like Flolan.

Experiencing milestones other families would consider pedestrian holds a deeper significance for us because of the activities we’ve missed together. However, looking back, I’m so glad we took the time to foster Tim’s hobbies in a modified style. We didn’t give up on the importance of the familiar rest that everyone needs from the daily grind.

In 2016, we celebrated Tim’s central line removal with a trip to the Outer Banks of North Carolina. All five of us took a swim in the ocean for the first time together, and it was bliss. The experience was like touching the finish line in a game of Mother, May I. Shoulder to shoulder, each person joyfully celebrated a shared victory and we left no one behind.

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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