What a backflip into water says for my husband’s medical autonomy

How my family and I are learning to let the patient make the decisions

Karen Schultz avatar

by Karen Schultz |

Share this article:

Share article via email
Banner for Karen Schultz's column

Tim, my husband with pulmonary hypertension (PH), says on occasion, “It’d be nice to be normal sometimes.”

He said that earlier this month, when we took a boat out for the July Fourth weekend. In North Carolina, where we live, July means one temperature: scorching. Relief comes in a few forms, one of them being the cool water of a nearby lake. But this outing was a time when he wasn’t able to be “normal.”

Tim kindly chauffeured our family around Lake Hickory and then watched us jump in the water while the boat was anchored and the wind was still. Left behind because of his central line, he looked a bit like a lost soul. I offered to stay on the boat and hang out with him, but he asked why I should suffer, too.

Hmm? Why should either of us? Determined that he not be left out again, I researched how he could swim with a central line.

Recommended Reading
A variety of healthy foods are shown.

Healthy diet coupled with at-home training can improve life with PAH

As I’m available to help if anything goes awry medically, we went about fashioning a swimming pouch that Tim could use in the lake. We purchased one meant for electronic equipment, which could handle his pump, then set out for the lake once again. Once I told my family about our workaround, everyone wanted to join us to see Tim swim.

When we anchored in Lake Hickory, the group as a whole was concerned about Tim jumping in, considering all the what-ifs related to his pump. Not Tim. He promptly headed for the stern and backflipped off the boat with a huge grin.

The moment was burned in the memories of all of us present, though perhaps in different ways. My mom and I started clapping and shouting encouragement, my oldest and youngest began crying out of fear, and my son just stared at him and said, “Did not know Dad could do gymnastics.”

This range of reactions reveals how our family feels about treatment changes. Changes in Tim’s medications and healthcare team affect his care. Ultimately, we realized, such changes are Tim’s decision, though we’re welcome to offer encouragement, tears, comments, and wonder. After all, Tim has to live with the rewards and the failures. Nobody knows the patient’s story better than the patient.

Others are welcome to offer opinions and advice, but the person living with PH has to live with the decisions in a real way. That’s why I gently give my views when asked, but leave the decisions to him, as he’s the patient. Most of the time, he’s been intuitively correct about his own body.

Learning to let him, metaphorically, drive the bus was a hard lesson, but it’s one I and every caregiver must learn. The grin and backflip were worth it for everyone, especially the bus driver.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.

A Conversation With Rare Disease Advocates