Five years after my PH diagnosis, I graduated from Northwestern University with a master’s degree in mental health counseling. I gave the class speech at my graduation and emphasized to my classmates that our hardships and traumas don’t define us. We are people first and foremost.

I am a caring, loving human being who enjoys a good silly comedy or rom com, fosters kittens, reads books, has great friends and also happens to have PH. I learned how to redefine who I am.

While learning to support others, I practiced exercises to help heal my own wounds. I learned to set better boundaries and prioritize self-care, and I figured out how I want to be treated as a person with a chronic illness. Self-care is taking care of things that will make you feel better, even if it’s just doing laundry to cross that off your to-do list. For me, self-care is ordering my groceries for pick up, so I don’t have to walk through the grocery store.

The hardest part of my healing journey was accepting my diagnosis, and that PH will always be a part of my life. I’m now in my early 40s. When planning my future, I never expected to wear oxygen at this age. I remind myself that my disease does not define me.

Fear factor

I never expected this would be my life. In late 2013, I started gaining weight and felt breathless walking up the stairs. I knew something was seriously wrong. I visited my primary care doctor who referred me to a cardiologist. After completing the echocardiogram, the cardiologist sent me to the emergency room and said, “Tell them you have a pulmonary embolism, so they’ll see you faster.”

I received a PICC line and remained in the intensive care unit for 10 days. On day 11, I received my first right heart catheterization, and I was diagnosed with PH. The doctor told me that I’d be lucky to live to the end of the year.

After receiving my “fatal diagnosis,” I immediately was put on triple therapy and IV remodulin. Two months later, in April 2014, I attended a PHA support group where a PH specialist was a guest speaker.

After the meeting, I called him to ask for a second opinion. By the end of May, he said, “You definitely have PH, but we have time to figure this out.” I’ve been seeing him and his team for 10 years, and they are the reason I’m here today.

My team listens to me, advocates for me and lets me do what’s best for my lifestyle.

Always adjusting

PH is a progressive disease, so you learn to adapt. I started with a pump, but gradually transitioned to Orenitram (treprostinil), which wrecked my stomach and gave me other brutal side effects. It was worth it though for the lifestyle I wanted to live. I got to swim with dolphins and make memories I wouldn’t have been able to with the pump.

After six years of being pump free, I’ve been back on the pump for a year and now wear oxygen when I exercise or walk for longer distances.

I felt like I took a step back in my journey. I had to relearn how to manage the pump, but I adjusting to what my body needs comes with this disease. That’s why it’s crucial to advocate for what you want and find a team that gives you treatment options that you get to choose from.

Mental struggles

This journey isn’t easy, and depression is real.

I learned to manage my day-to-day life and made the choice early on that I wasn’t going to stop living my life. I only get one shot.

What keeps me moving forward is knowing I’m making a difference in other people’s lives. I can’t change my situation, but I can help people mentally prepare for their next steps.

Since September 2021, I’ve worked at the Military and Veteran’s Crisis Line. I relish helping people in their hardest moments in life and help them move forward. When I was going through my diagnosis, I had no one to “hold space” to help me compartmentalize trauma so I could take the next steps toward healing. I want to be that safe space for those in need.

Road to acceptance

I found hobbies and ways to make life worth living.

For 16 years, I had a cat named Kitchen, who went through my PH journey with me and curled up next to me in my moments of despair. Kitchen went through everything with me. When he passed in 2022, I was heartbroken.

In 2023, in his honor, I started fostering kittens and helped 10 get adopted into good homes. This year, I started fostering younger kittens to get healthy and strong before being adopted.

It’s important to feel moments of sadness and grief to start your healing journey. But afterward, it’s important to find the road to acceptance so you don’t waste time and energy spiraling instead of enjoying life. For me, that’s with a good book where I can transport myself to another world, playing with my nephew or spending time with family and friends.

I’ve had multiple people ask why I don’t move back home to Rochester, New York, where my entire family lives, to help me on this journey. The short answer is: I’m not ready yet. I have the best care team, a supportive community and amazing friends. And I like being independent. In the end, it’s me who has to live with this condition. It’s important to find acceptance, advocate for your health and find the way to keep moving forward.