In July 2015, I came down with what I thought was a chest cold that never seemed to get better. I spent the next three months going to my family doctor and several walk-in clinics, trying to figure out what was happening. I was short of breath, often saw stars, and my heart would race. I passed out on October 31, 2015, and my 6-year-old daughter called 911. I ended up in the ER, where I had an excellent Doctor. Within 2 hours, he thought I had pulmonary hypertension (PH) but wasn't sure which type.
I spent the following two weeks in the hospital receiving scans, breathing tests, blood work and a right heart catheterization. This hospital was a teaching hospital, so I also answered questions from resident doctors, interns, and respirologists. Finally, I was diagnosed with Idiopathic pulmonary arterial hypertension (iPAH) and transferred to a PH specialist for care.
In March 2020, I joined the waitlist for a transplant. My husband and doctor felt it was the right time, but it was still difficult for me. I wanted to live and be there for my family. I understood, however, that it was only possible when I received my transplant because another family would be experiencing a terrible loss.
I would be lying if I said my PH journey has been easy for my family. My husband took six months off of work when I was diagnosed, attending all my appointments and becoming a strong advocate for my care. My oldest daughter became a mom to her younger sister. My son and his wife are also caregivers, picking up the slack when needed.
I received my transplant in August of 2022 and have learned that having a strong support system is very important. In addition to my friends and family, I have a great transplant nurse who is a phone call away, and I have a friend who had a double lung transplant who has helped guide me through my PH and transplant journey. I am so grateful for everyone who has helped me through my journey, and I have learned that sometimes, you need to ask for help when you need it.
Comments