I have faced the challenges of chronic illness throughout my adult life. When I was 21, I started experiencing unusual and often debilitating symptoms, such as fatigue, shortness of breath, heart palpitations, Raynaud’s phenomenon and bodily discomfort.

Doctors frequently dismissed my symptoms because I was young, and my outward appearance didn’t match the symptoms. After numerous frustrating doctor appointments, I felt the need to create what would eventually become my “black box.” The box contained test results, medical records and descriptions of overlooked symptoms.

That black box of records went everywhere with me and became the voice few allowed me to share. It took nearly seven years to establish a connection between my symptoms and an official diagnosis of systemic scleroderma.

Taking control

Despite feeling medically disregarded, I was determined to take control of my health and become involved in making well-informed decisions regarding my treatment and lifestyle.

As time passed, my condition deteriorated, and I developed new autoimmune diseases. Shortly after giving birth to my daughter, I learned that I was experiencing heart failure and my scleroderma was progressing. I was 35.

Faced with this daunting reality, I knew I needed to continue advocating for my health and collaborate closely with my medical team to explore all available treatment options. I desperately needed to slow the progression of this debilitating disease.

Serious setback

In November 2021, my life changed in a way I never could have expected. I went to work feeling fine. Within 24 hours, I was diagnosed with COVID-19, hospitalized for a week with double pneumonia and sent home to recover.

As the days passed, I became increasingly ill. I couldn’t take two steps without gasping for air, and I had paralyzing fatigue. A pounding in my heart that left me shaking as if I was having a seizure. I knew something was terribly wrong.

Those symptoms were so much worse than what I had managed over the past 30 years. Doctors told me that my symptoms were related to long-term COVID-19 and to give it time.

Worsening symptoms

A couple of months passed, and I couldn’t function. I began losing consciousness more frequently. In February 2022, I received the devastating news that my heart failure had escalated to the right and left heart. And I was diagnosed with severe pulmonary arterial hypertension, a complication of scleroderma.

I spent three weeks in the ICU, trying to stabilize. I embarked on an intensive treatment plan that included various therapies, rehabilitation and cutting-edge medical devices to bolster my heart and lung function.

Rediscovering clues

The new diagnosis left me shocked, and I felt like I had received a death sentence. I wondered if the black box I carried around for all those years contained any connection to this new diagnosis.

Sadly, it did. When I reviewed some of my files, it was as if I was reading my medical chart today. So many symptoms I described 30 years ago are present today. There were multiple mentions of routine screening for PH and heart failure.

Treatment regimen

Today, my disease is progressing faster than my treatment can keep up with. In 2024, I was hospitalized for two weeks for diagnostic testing and to stabilize disease progression. During that time, I had a CardioMEMS device implanted.

The device seems promising: It allows my cardiologist and pulmonologist to closely monitor my pulmonary artery pressure and heart rate in real time. With real-time data and more proactive treatment, ideally I won’t have to spend as much time in the hospital.

When I was diagnosed with PAH, I already had advanced left-sided heart failure, which made supporting the right side difficult. My heart was too weak to tolerate aggressive treatment, so we had to treat each section of the heart separately and slowly.

After trying many oral medications and subcutaneous treatment, I needed a more targeted therapy. I chose IV Remodulin (treprostinil) over a year ago, and it has been one of the best decisions I’ve made. Winrevair (sotatercept) is promising, but the process has been start-and-stop for me.

The left side of my heart, supported by a pacemaker/defibrillator and oral medications, has shown a positive change, allowing my team to focus more on improving the right side of my heart.

I now rely on oxygen support for day-to-day functioning, but I am optimistic that this need will subside over time. Symptomatically, I don’t feel my best, but mentally, I feel much stronger.

Over the last two and a half years, I have been adding to my wellness toolbox, so I am much more equipped to handle setbacks or changes in disease management.

Motivated to volunteer

Nothing could have prepared me for life after diagnosis, not even the 30-year journey of managing chronic illness. Overwhelmed by the emotional and physical roller coaster of my PAH, I vowed to do whatever I could to help other people find and maintain hope, faith and strength.

I couldn’t imagine anyone facing the loneliness and loss I felt, so I wanted to try and minimize that stress for other people. The Pulmonary Hypertension Association opened the door to hope. I joined as many Facebook groups as I identified with and immersed myself in finding valuable resources to help me survive and learn to thrive.

My motivation as a volunteer is to empower, educate and enable fellow pulmonary hypertension patients to make good decisions and the right choices for them in dealing with this life-changing condition. This can become possible through knowledge, access and community.

I spent a lot of time researching and gathering resources that could improve the quality of my life, hoping to share them with the PH community. I hope to be a compass for the community and helping them navigate their journey.

Becoming a peer mentor

When the opportunity to become a PHA peer mentor volunteer presented itself, I knew it was the perfect fit. I have a strong knowledge of identifying obstacles and helping people overcome them by developing personal strategies.

Connecting with others who share similar experiences brings comfort and strength in a world that often feels isolated. A deep sense of fulfillment and joy comes from helping those facing challenging circumstances.

Sometimes, all it takes is a simple act of kindness to make a difference. Volunteers embody the true spirit of humanity, showing us that empathy and compassion can heal physical ailments and the emotional wounds that often accompany them.

Finding purpose

As a PHA volunteer, I have gained a sense of purpose. Giving my time in a meaningful area makes me happy. I volunteer because it makes a difference — there is no doubt about it.

We all know what it feels like to do something for someone else. When you lend a helping hand to someone, give someone your time and listen, or do something just to see the look of joy on someone’s face — that’s what we’re all in it for.

As a volunteer, I feel proud to provide support that allows people to have hope, be vulnerable with no judgment, and meet them where they are. Every diagnosis has a different definition for that person. There is no one-size-fits-all approach. It’s so important to provide guidance that isn’t biased.

The grieving process can be empowering when you feel supported by people who genuinely understand what you are going through. Your support system can be a game changer.

Many people have inspired me throughout my journey. My family, friends, doctors and nurses are the foundation for my survival. However, my fellow PH warriors have become the inspiration for maintaining hope. They humble, inspire, energize and keep me going.

Everyone has something unique to offer. While mourning our old lives and missing our work or hobbies, we need to recognize that our skill sets are likely transferable and highly valued in the volunteer world.

Our knowledge and talents help our community. It’s easy to underestimate the power of a touch, a kind word, a smile, a listening ear, or even the smallest act of caring. But I can assure you, that as a PHA volunteer, you will experience all of these acts.