Kicking Off the New Year by Taking Control of My PAH

by Actelion Pharmaceuticals US, Inc. | January 4, 2023

Sponsored Content Provided by Actelion Pharmaceuticals US, Inc.

Fourteen years ago, I was diagnosed with pulmonary arterial hypertension (PAH). I didn’t initially understand the severity of my diagnosis; then my online research told me PAH was a death sentence. I knew I needed to fight to survive for my son.

Since that life-changing visit to urgent care in 2009 when I received my diagnosis, there have been challenging moments, but I’ve still been able to live a full, active life – even being part of a motorcycle community.

I’ve learned a lot about living with this rare disease since then, and I want to share some tips to help those of you living with PAH advocate for and empower yourself to reach your health and wellness goals, this year and in the future. It’s important for people living with PAH to know that their voice matters.

Having an Open Dialogue With Your Care Team

My PAH care team and I both play a role in making sure my condition is assessed on a regular basis. My responsibility is to have open, honest, and ongoing conversations about how I’m feeling, work with them to set treatment goals, and monitor changes to my condition.

To kick off 2023, I recently started using Care4Today^® Connect, an app that helps me track my PAH symptoms and how I’m feeling in between office visits.

Previously, I prepared for my appointments with sticky notes that I sometimes lost or forgot at home.
Often, I’d also leave my doctor’s office feeling frustrated about that one question I didn’t ask. Care4Today^® Connect can send reminders, like when it’s time for a medication refill, and keeps track of goals my doctor and I develop together so I can bring them up at my next appointment. This allows me to focus on what matters most to me and my individual experience with PAH.

Never Stop Educating Yourself

Looking back on my life as a newly diagnosed PAH patient, there was little information online that was hopeful; however, I continued sharing new learnings with my doctor, who worked hand-in-hand with me to get answers. In fact, I always kept what I was reading in the back of my mind until I could discuss it live with my doctor.

Once I was familiar with PAH, I learned I could enroll in clinical trials. I called my clinical nurse, Sandee Lombardi, RN, nearly every day until she found a PAH study that I could participate in. I never settled; I slowly became less self-conscious about speaking up, and more active and in control of my care plan and my disease.

Find Your Supporters

The feeling of not being alone when facing a rare disease goes a long way. I found a close-knit, local support group that provides comfort and connection in our shared experiences; now, I’m the leader of that group. I recently met someone who was newly diagnosed and was surprised by how little she knew about PAH. Seeing her experience and meeting others with PAH drives me to help lessen the burden of isolation and feelings of uncertainty that often come with being newly diagnosed and having a rare disease.

Ultimately, I want to provide support so that others don’t take as long to get to the level of education and confidence I feel now, 14 years after my diagnosis.

I invite you to join me in my New Year’s resolution to take my PAH treatment journey by the reins – through tracking symptoms, preparing for appointments, and taking advantage of resources like Care4Today^® Connect.

I also invite you to join the upcoming Facebook Live event I’ll be speaking at, “Taking Control: The Power of Self-Advocacy and Management in PAH,” on January 19 at 8:00 PM ET, on the Breathe In, Speak Out About PAH Facebook page. My fellow panelist, Sandee Lombardi, RN, and I will continue sharing our experiences with PAH and discuss why now is the perfect time to set health goals for 2023.

You can download Care4Today^® Connect on the App Store and Google Play store. Use code “PAH” to register and receive specific content tailored for you.

Join the Movement:

Breathe In, Speak Out About PAH (BISO)

Facebook

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Pulmonary Hypertension Association

Website

PHaware Global Association

Website

Team PHenomenal Hope

Website

Stacey is a paid consultant for Actelion Pharmaceuticals US, Inc. and contributed to this content based on her individual experiences. All thoughts and opinions expressed are solely hers and do not necessarily reflect the views of Actelion Pharmaceuticals US, Inc.

About the Author

Stacey is 50 years old and resides in San Diego, California, where she was born and raised. She was diagnosed with pulmonary arterial hypertension (PAH) in 2009 after just three months of symptoms. Stacey stays very involved in the PAH community through her support team at UCSD. She is currently managing a PAH support group and participating in a natural history study at The National Institutes of Health (NIH). She is a proud mom and soon-to-be grandma.

References:

Hoeper M. The changing landscape of pulmonary arterial hypertension and implications for patient care. European Respiratory Review. https://pubmed.ncbi.nlm.nih.gov/25445943/. Published December 1, 2014. Accessed December 9, 2022.
The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: results from an international survey. https://www.phaeurope.org/wp-content/uploads/PAH_Survey_FINAL.pdf. Published September 2012. Accessed December 9, 2022.
Schissel M. PH plus: Life with associated PH – pulmonary hypertension association. PH Plus. https://phassociation.org/wp-content/uploads/2017/01/Patients-toolkit-Empowering-the-Patient-with-Associated-PH.pdf. Accessed December 9, 2022.
Humbert M, et al. 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension. The European Respiratory Journal. https://pubmed.ncbi.nlm.nih.gov/36028254/. Published August 30, 2022. Accessed December 9, 2022.
About Pulmonary Hypertension. Pulmonary Hypertension Association. https://phassociation.org/types-pulmonary-hypertension-groups/. Published August 11, 2022. Accessed December 9, 2022.
Vachiéry J-L, Gaine S. Challenges in the diagnosis and treatment of pulmonary arterial hypertension. European Respiratory Review. https://pubmed.ncbi.nlm.nih.gov/23204119/. Published December 1, 2012. Accessed December 9, 2022.

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