They Say the Gift of Time Is Precious, so What’s a PHighter to Do?

Making room for pulmonary hypertension with all the rest we have to do

Mike Naple avatar

by Mike Naple |

Share this article:

Share article via email
banner image for

It’s the season of giving, and I’m thinking an awful lot about the precious gift of time. During a recent interview on the “Today” show to discuss his departure from hosting “The Daily Show,” comedian Trevor Noah said, “Time is the one thing we cannot increase … so make more time, find a way to create that time.”

Noah is right, contradictory though his statements seem. We can’t create more time; however, we do create an illusion of more time with the people, obligations, and things that fill our time every day. By making choices, we allocate (or don’t, for that matter) time that fills our days and uses up our energy. During the interview, Noah suggested that we need to make time for everything else that happens in life — whether that’s spending time with family, friends, or anything else one might want to do.

But what about making time in your life for a rare disease like pulmonary hypertension (PH)?

Recommended Reading
A column banner depicts colorful flowers against a pink background, with the words

Celebrating Donors and the Gift of Time

Before my PH diagnosis, I made space in my life for my friends, family, partner, and job — admittedly too much time on that last one. I couldn’t fathom squeezing a chronic illness that would leave me short of breath into that already overstuffed schedule.

I remember sitting in a hospital room in 2016 as a team of doctors described pulmonary hypertension in medical terms, thinking that I certainly didn’t have time for all of this — whatever this new-to-me disease was all about. Perhaps in that moment it was silly of me to be so flip, but the clock was ticking, and I was ready to head home.

I would eventually learn that PH didn’t quite care if I had the time for it or not, thanks to symptoms and side effects like exhaustion, chest pains, and low oxygen in the body that could stop me in my tracks. Side effects, the disease, and me — a very crowded “Three’s Company” of sorts, all sharing space and demanding more time.

Beyond the physical aspects of the disease, time must also be allotted to taking prescriptions, refilling medications, attending checkups and testing, and managing medical bills. Time might be a precious gift, but after the experience of being on the phone for the better part of an hour dealing with a pre-authorization issue for a prescription, I sometimes wonder if it’s returnable.

As I learned more about PH, specifically regarding the life span of people living with the disease, I did see time as a gift, in the form of a marker. If I could live for three years with PH, then I would make it beyond the life expectancy as defined by the outdated information on the internet. Leaving those dark ages behind, I made it to the significant five-year marker, and I’m looking ahead toward my seventh year post-diagnosis.

As much as I try not to dwell on life expectancy, it does linger in the back of my mind, slowly making its way forward every now and again. Life is full of uncertainty, PH-related and not, and I don’t become too preoccupied with what I can’t predict. In this respect, time is a gift that I definitely want to keep.

Does a ‘life-life balance’ exist?

In that same “Today” interview, Noah mentioned how the past few years made him rethink time as it relates to work-life balance. “I came to realize during the pandemic, it’s a life-life balance,” Noah said.

The thought here is that work and nonwork activities and obligations, which for me would include managing a chronic illness, are not mutually exclusive. We’re all just living one life, whether the demands lean in the more personal direction or professional. We’ve all experienced moments up on that tightrope, trying to maintain that delicate balance when one side outweighs the other.

When I hear “life-life” balance, echoes of finding a “new normal” post-PH diagnosis ring in my ears. Part of managing PH to ensure a better quality of life can mean slowing down, which in some ways creates a space of more time. While I struggle with this on a regular basis — not just because I have difficulty sitting still for too long — I have slowed down a bit. In such times, the choice to focus on myself and my health has been a gift.

Giving the gift of time

Somebody thanked me recently for giving them the gift of time. Their expression of gratitude brought me to tears. Life asks so much of us. It can be difficult to break away from the rat race, especially during the holidays, even when PH flare-ups pull you to the sidelines. Making more time often requires hard choices, which is why it can feel like such a wonderful gift.

I know it’s on my holiday wish list. Is it on yours?

Follow Mike Naple on Twitter @mnaple.

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