Living with PH means juggling an array of medical devices

During the holidays, I love spending time in the kitchen, using all my favorite devices to bake cookies and other treats that remind me of past Christmas celebrations. With a stand mixer, food processor, cookie press, and immersion blender, I feel like I’m starring in my own Food Network cooking show. However, outside of the kitchen, I’m not always as enthusiastic about using new devices, especially when it comes to necessary medical equipment.

You’d be surprised by the number of devices that a chronic illness like pulmonary hypertension (PH) can introduce into your life. I was prescribed oxygen during the pre-diagnosis phase for when I overexerted myself or felt short of breath. Gradually, oxygen canisters took up residence in one corner of my small walk-up apartment. I used them intermittently, and while they didn’t feel like a major intrusion, they didn’t prepare me for the overwhelming number of medical devices that followed my diagnosis.

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Monitoring vitals and symptoms

PH affects the heart and lungs, and symptoms of a flare-up can include shortness of breath, fatigue, rapid heartbeat, and more. Each person’s body likely responds differently depending on the severity of their diagnosis, but most people with PH probably monitor their breathing and heart rate regularly.

One device I use to check my oxygen saturation levels is a pulse oximeter, which resembles a clothespin or a chip bag clip. You place it on your finger and wait for a beep announcing the results. If my oxygen levels drop below 90%, I take a moment to use my oxygen machine to raise them and check again shortly afterward.

Medical devices are like potato chips: You can’t just have one. I have multiple pulse oximeters in my apartment and work bag, as well as a few extras, because I sometimes misplace them. Additionally, I have both a regular and portable oxygen concentrator, a CPAP (continuous positive airway pressure) machine, and the various batteries and accessories that come with them.

Early struggles with sleep device use

Before my PH diagnosis, I didn’t rely on many medical devices to maintain my quality of life. Adjusting to even a single new medical device can be challenging, let alone the multiple ones necessary for my health. I use a CPAP machine every night to treat my sleep apnea, which helps keep my PH under control. Among all the medical devices I use, the CPAP machine was the hardest to accept and use regularly. The intense flow of air pressure and the tightness of the mask made it difficult to sleep in those early years. While it was more comfortable to sleep with just the oxygen concentrator and a nasal cannula, that wasn’t always the best choice for my health.

I knew I had to figure out how to sleep with both the CPAP machine and the oxygen concentrator. After my pulmonary doctor explained the connection between CPAP compliance, PH, and life expectancy, I eventually changed my approach. I also owe credit to my partner, who continually reminds me of the benefits of consistent CPAP use. I’m proud to say that my apnea-hypopnea index — which measures the average number of apnea and hypopnea episodes one experiences per hour during sleep — has been reduced significantly.

Trains, planes, and medical devices

I’ve previously written about what it’s like to travel as a disabled person and fly with a medical device like a portable oxygen concentrator. Navigating security is often a lengthy process, and I’m always surprised when a Transportation Security Administration agent doesn’t pull my concentrator out of my backpack, allowing me to move through security more quickly.

If I’m traveling for more than a long weekend, I need to ensure I have a large oxygen concentrator wherever I’m staying. There were times when I didn’t have the larger machine, and my energy levels would dwindle as each day passed. Arranging for a concentrator to be delivered to my destination requires advanced planning, and the closer I book to the departure date, the more expensive it becomes.

This past Thanksgiving, my partner and I packed the big oxygen concentrator into a large suitcase and took it on the train.

As I prepare to travel to California for the holidays, I’m making a list of the devices I’ll need — and yes, I’m checking it twice!

Despite the hassle, I genuinely appreciate being able to access and afford all the medical devices that help me breathe and feel my best. They enable me to maintain my stamina, allowing me to spend more time in the kitchen baking. Heck, even using a stand mixer conserves some of my energy.

Now, does anyone know if they make cookie cutters shaped like medical devices?

Follow me on X @mnaple or Bluesky at @mnaple.bksy.social.

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.