Breathing Through the Journey

Sharing Facebook post dated 2.10.26

“You look healthy” is probably the most frustrating thing to say to me right now. Why? Because although I look healthy on the outside, I am not on the inside.

Idiopathic Pulmonary Arterial Hypertension (IPAH): is a rare condition where the blood pressure in the arteries of the lungs becomes dangerously high for no clearly identifiable reason (“idiopathic” means the cause is unknown). This makes the heart work harder to pump blood through the lungs and can lead to symptoms like shortness of breath, fatigue, chest discomfort, and dizziness.

To help manage (IPAH), I’m on a combination of medications that help lower pressure in my lung arteries and support my heart. Opsumit helps relax and protect the blood vessels in my lungs, sildenafil helps them stay open so blood flows more easily, and Remodulin (which I receive continuously through a pump) works to widen those vessels and improve circulation. These treatments don’t cure the condition, but they help manage symptoms.

I have good and bad days. Good days, I feel like a rockstar and able to do household chores without feeling shortness of breath (SOB). I have the energy to go out and “feel” normal. Bad days, my body feels exhausted, the weather impacts my SOB, and/or in pain from my medicine site irritating me. It’s now become a normal thing for me to feel irritation at the site depending on the pants I am wearing, to have swelling in my ankles/feet as a side effect. I am still learning what my new life looks like and grieving my past life.

Tomorrow, I have a doctor’s appointment that will determine how I am responding to my medicine. We will review my bloodwork, a 6-minute walk, and an echo. My results will determine next steps. I am praying for positive results— there is nothing better than hearing positive results right now. Over the past 10 days I have felt a difference in my breathing, which is making me hopeful.

I’m staying hopeful and keeping the faith — just praying for positive results and better days ahead. Thank you so much to everyone who’s been supportive, encouraging, and checking in on me. It really means a lot