I Have Pulmonary Arterial Hypertension. Now What?

I vividly remember my very first visit with my pulmonary hypertension specialist. He was incredibly patient with me and took the time to deliver such fragile and life-altering news. I was completely overwhelmed with emotion, I couldn’t even put a sentence or a single thought together. I just couldn’t believe this was happening to ME.

It all hit me at once

He showed me every test and scan, diligently reviewing each detail until I finally grasped on to how sick I was. I immediately started crying as he showed me the pictures from my echocardiogram. I could clearly see my heart was 2 sizes too big, and not in a good way.

Then it all hit me at once. How am I going to return to work? How am I going to be a mom? Am I going to need oxygen for the rest of my life? How much longer do I have to live?

Those were all of the immediate questions. As time went on, I found myself in circumstances carefully evaluating every move I was about to make. At one point, I became a little too confident in my heart and found myself falling into my first syncopal episode where I completely fainted and passed out. That was the wake-up call I wasn’t ready to answer.

I didn't recognize myself anymore

My PAH diagnosis created a huge void in my life. I quite literally didn’t recognize myself anymore. I wasn’t a physical therapist and didn’t know if I ever would be again. I was no longer a mom once my daughter passed away at 8 months old due to her own complications with pulmonary hypertension. My husband became my caregiver, and I was no longer the same wife he married. The only thing I could contribute was stress and medical bills. I didn’t know who I was anymore or what was to come.

I must have tried every hobby possible to find purpose and worth in my new life after diagnosis. I tried so hard to put back the pieces of me that were broken. I had lost all confidence in myself and couldn’t envision any future goals.

My condition began improving

After what felt like a never-ending eternity, I started to move through the cycles of grief to find acceptance. I was on the maximum available treatment for pulmonary hypertension, and then something clicked. I was finally getting better. My test results were starting to not only show but also maintain signs of improvement. That alone gave me hope and renewed trust in myself again.

I was finally brave enough to try something new and return to physical therapy in a way that was accessible to me. I started to value every opportunity in life again. I started to take chances. I learned that just because I have to alter my life to accommodate the dangers of PH doesn’t mean I have to completely lose who I am as a person.

I don't have to pretend it's easy

There are still so many unanswered questions, fears, and vulnerabilities. There are days I’m thankful my treatment is working, and there are days I wish I didn’t have to rely on treatment so heavily.

Even after all of the trauma I have faced, I still somehow find it possible to search for the silver lining. I had to finally admit to myself that living with pulmonary hypertension is hard, and sometimes it really just sucks. I told myself it was okay to feel these things, and I didn’t have to pretend like everything was easy all of the time.

Not letting PH determine my life

Once I was able to acknowledge and validate my own emotions, I was able to return back to myself again. Little by little, I was able to do more with less symptoms. I started to feel confident in my body again. Mind you, this took years to achieve.

I still cry, I still get angry for years of misdiagnosis, I’m still in shock that this is my life. However, I finally learned how to live my life with pulmonary hypertension and not let pulmonary hypertension determine my life.