Mesha Guilloty was born in 1991, the same year that four women formed what today is the Pulmonary Hypertension Association (PHA). Mesha’s pulmonary hypertension (PH) symptoms began when she was 14, but she wasn’t diagnosed until nearly a decade later. Mesha, who lives in North Carolina with her husband Nathan and daughter Mila, represents Generation Hope, people 18 to 39 with PH. Her story originally appeared in the December 2021 issue of Pathlight, PHA’s member magazine.

By Mesha Guilloty

I remember my first PH symptoms as if they happened yesterday. I was at home with my dad and siblings when my dad asked me to grab him a snack. I ran downstairs, back up and handed him the snack. I was extremely winded, tired and dizzy.

I tried to make my way to the bathroom, but passed out on the floor. I was confused and scared. I was unsure how I ended up there and couldn’t recall how long I had been there. That was the first of many times I would lose consciousness.

My PH diagnosis journey was a rollercoaster. I remember several trips to the emergency room, urgent care and ambulance rides after passing out. I was told many different things, and I felt frustrated to keep experiencing what I now know to be fainting episodes.

My medical tests all came back normal. I realize now that my symptoms were apparent during exercise or activities that caused my heart to work harder (such as carrying books/groceries), but not when I was at rest.

It took me about eight years to be diagnosed with the keep experiencing what I now idiopathic PH. My case is interesting to my providers because my identical twin sister doesn’t have PH.

Balancing frustration and determination
Since being diagnosed, I try to find beauty in everything. I once was told that everyday tasks would become impossible for me to complete. I don’t know what I’m trying to do more: prove doctors wrong or show how good God is. Maybe a little bit of both.

I’ve learned to stand up for my health and my decisions related to that. My team at Atrium Health has done an amazing job at helping me achieve that.

Since I’ve been diagnosed, so many drugs have developed to help people with their symptoms. One I’m taking now wasn’t around when I was first diagnosed. It has changed my life. The road to getting to the optimal dose was tough, but it was worth it.

Strength in numbers
Sometimes, being a young person with a rare disease is overwhelming and frustrating. Other people my age don’t experience life the same way I do.

I connected with PHA’s Generation Hope group shortly after my diagnosis. My mom found the group, and I joined after that. So many amazing people share their stories of victory and tribulations with the disease. At times it can be humbling, and it can be a wakeup call that the disease is real and life-threatening. But I’ve learned resilience and not to feel sorry for myself.

Future of hope
I hope PH research can continue to grow. I think I speak for everyone when I say a cure would be the best outcome for all of us. I also would like to see more education for health care providers. So many of us are misdiagnosed for so long. It’s critical that people be diagnosed as quickly as possible. It could be the difference between life and death.

I also want other young people to know that they aren’t alone, and they don’t have to be defined by this disease. Every day is a fight, but it’s a good fight. I wish I would’ve known that It’s important to listen to your body, speak up when something doesn’t feel right and that it’s OK to fight for what you want.

Mesha’s story and other inspiring content is exclusively available to PHA members in Pathlight magazine. Join today to enjoy Pathlight, reduced PHA 2022 Conference rates and more. Choose the membership category best for you. By joining at the Supporter, Leadership or Champion level, you support PHA’s patient programs, including PHA On the Road educational forums and PHA support groups. To join by phone, call 301-565-3004 x810.

Health care professionals who join one of our two medical membership networks, PH Clinicians and Researchers or PH Professional Network, also receive Pathlight.