The Cost of Living With Pulmonary Hypertension

The cost of living with pulmonary hypertension (PH) is very high. I’m not referring to the cost in dollars, although that, too, can be well into the hundreds of thousands due to medications alone. I’m referencing the physical and mental load it costs to manage a chronic, life-threatening illness every single day.

I’ve been treated for PH going on 3 years now, and just recently I took a step back to realize how much of my life involves planning around this disease. While I still attempt to live my life to the fullest possible extent and push the boundaries of my own limitations, I always have to be 1 step ahead. Unfortunately, there are no days off with PH.

Navigating life with a medication pump

One of my medications is administered from a subcutaneous pump into my abdomen. This pump has to always be running and cannot be disconnected for more than 4 hours. If that happens, I could experience a serious relapse of PH symptoms, which can be life-threatening. Now read that again.

This medication has saved my life, but there is no escaping it. I have to cover up the catheter side in my abdomen when taking a shower. Whenever I leave the house, I have to take a remote with me that controls my pump. If I travel, I have to take my mini pharmacy with me, plus all of the extra "what if" supplies. I have to plan outfits to accommodate my tubing and fit my pump without any awkward bulkiness. I can’t even pull my pants down without being cautious not to pull out the site where the medication is administered. It is there, always.

A strict medication regimen

Every 2 or so months, I have to change the site on my body where the medication is delivered. This results in a miserable pain for roughly 7-10 days until the new site becomes accustomed to the medication. I have to plan to be essentially bedridden those days, because the pain is unbearable at times.

This is just 1 of my medications, and fortunately, the rest are in pill form or 1-time injections. However, none of these medications can ever be missed.

Coordinating treatment around work and travel

Then, I have to account for the amount of phone calls I have on a weekly basis. This usually comes from my specialty pharmacy arranging medication refills and deliveries. It also involves coordinating appointments, confirming the arrival of test results, and just general medical questions that can’t wait for a 3-month followup visit.

And then there is work, my career. I am a physical therapist and absolutely love what I do! However, I am well aware that I am working to provide health insurance to cover my medications and keep me alive. To me, switching jobs or reducing my workload to part-time is not worth the headache of scrambling to find insurance coverage before my next month of meds are due for refill. That would be my worst nightmare.

There was a point in time where I was controlled by how far my oxygen concentrator could travel, or how many hours I had in a single oxygen tank. I couldn’t even fathom going to the grocery store, because I would be spent for the day. At the time, my mind could never envision escaping the reality that somehow became my life.

It's okay to have hope for the future

It is okay to recognize how hard it is to live with pulmonary hypertension. No part of this disease is easy. If the symptoms aren’t demanding enough, then the side effects from the treatments can end up dragging you through the mud.

It is also okay to have hope for the future and know you deserve to feel good and still do the things you love. No matter where you are in your journey, don’t forget to turn around and see how far you have come. Be proud of your body surviving in a world that isn’t even sustainable for a healthy person.

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