Life with PH prepared me to manage an increased treatment regimen

In the wake of a recent hospitalization, my life has quickly become dominated by new medications and treatment regimens. In addition to my physical recovery, which includes a focus on eating, hydration, and movement, I’m now filling the rest of my time with additional therapies, including vest and nebulizer treatments. Some of these things are new to me, and far more time-consuming than anything I’d experienced before. Within the span of six weeks, it’s begun to feel like managing my health is my full-time job.

This sensation is not unfamiliar to me. Growing up with pulmonary hypertension (PH) meant living with a progressive illness. And a progressive illness often means that treatments and therapies will inevitably increase as time goes on. My case was no exception.

A few months after being diagnosed with PH, I was placed on continuous IV treatment. This meant diligent central line care and time-consuming medication prep. Adding to an already intense regimen, the number of pills in my pill tray increased over the years. In high school, I began requiring oxygen to fly, and later, to sleep.

In college, side effects like bloody noses required appointments with ear, nose, and throat specialists, and ointments were added to my nightstand for application to my nostrils in the morning and night. There were always new problems that needed to be addressed.

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Perhaps most significantly, my care was transferred to pretransplant status during my freshman year of college, increasing the frequency of my checkups from every six to 12 months to every three months.

Following my heart-lung transplant in 2018, this ebb and flow of health requirements returned. At various times throughout the past four and a half years, I’ve been on tube feeds, required IV antibiotics, and needed regular home healthcare visits. This progression has not been linear, and predictably, the level of my medical needs always depends on the state of my health.

Finding joy amid health challenges

As I navigate this current overwhelming season of treatments and recovery following a difficult winter, I’m reminded of two things.

First, I can’t help but reflect on the years that have prepared me to be flexible and patient with these changes. Living with a chronic and complex illness can be difficult and discouraging for so many reasons.

But it also builds resilience. And as I face these changes in my day-to-day life that are outside of my control, I’m reminded that my years of practice have equipped me to moderate my mental well-being amid setbacks.

Second, I’m fortunate that many of these current additions are temporary. Even in the past month, I’ve progressed in my recovery and have been able to trim back on my initial treatment regimen.

It’s a reminder that this life is always in flux, and challenges are prone to dissipate with time. Just today, I was able to take a walk outside with my dog, something I haven’t been able to do regularly in a long while. I’m healing as springtime settles in and winter becomes a memory. And even in the jumble of medications and time spent tracking daily weights, oxygen levels, and lab values, there’s still space for me to enjoy the pieces of life that exist apart from this.

Throughout my life, my health burdens have always pushed me to look actively for the joys in life. Even when they’re small or drowned out by more pressing worries. I’m reminding myself of that now, and working to claim the good along with the bad.

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.