Becoming Rare: Welcome to ‘Blooming Hope,’ a New Column
When people ask to hear my story, I always offer the same opening line, “When I was 4 years old, I was diagnosed with a rare heart-lung illness,” as if I did not exist prior to that fated day. In some ways, this feels true.
If I have learned anything from this journey, it’s that I am called to share that which sets me apart — the things that make me rare. And as a pulmonary hypertension patient and a heart-lung transplant recipient, being rare is difficult to avoid. That’s why it’s so special for me to enter into this space of fellow PHighters and their loved ones, who are walking this unique journey with me.
So yes, my name is Anna, and when I was 4 years old … Well, you know the rest. As far as diagnoses go, mine was rather straightforward. Within the span of three weeks, my hoarse voice led us to a heart murmur, which led us to “something bigger,” and finally culminated with my idiopathic pulmonary hypertension (PH) diagnosis.
Despite the poor prognosis offered to my parents, I managed to survive 19 years with PH. This was largely due to the vigilant care of my doctors, and an aggressive combination of intravenous and oral medication.
Outside of frequent checkups and small procedures, my parents fought hard to ensure that my life was normal. We took wonderful family trips, and I was able to ski, dance, and play softball for many years. Most importantly, I was able to have a normal social life thanks to my dear friends who supported me in my complicated health journey.
Life went on like this, and I graduated high school. This is when we began to see some changes in my health. After a couple of fainting spells, my doctor felt it was vital that I be evaluated for a heart-lung transplant.
I underwent evaluation with the Mayo Clinic transplant team that summer. During this process, we were able to tweak some of my treatments, and my health improved enough that I decided to begin college in the fall, something we were not sure would be possible. Still, transplant was left on the shelf, waiting.
Throughout my four years in college, where I earned my degree in nursing, I was frequently seen by my transplant team. Each visit was the same: “Let’s see how things look next time.” We kept this pattern up through my graduation, at which point my doctors felt we could not wait any longer. I was in severe heart failure, and despite the way my body had compensated over the years, it was reaching its limit.
In August 2018, we traveled from our home in Minnesota to Stanford Health Care in California. I received the call three weeks later and was full of hope.
What was supposed to be a second chance became a complex and seemingly unending fight for survival. I was hospitalized for eight months following transplant as I dealt with just about every possible complication, from blood clots to respiratory failure.
After being passed across three centers, slowly moving closer to home, I was finally discharged in April 2019. Much of my hospitalization was spent weaning off a ventilator. Today, I still require a trach and supplemental oxygen, along with a ventilator at nighttime.
It’s not what I expected, but my life remains very full. While I now only use my nursing degree to care for myself, I keep plenty busy. I work as a photo editor and writer, and I also run my own art business. Additionally, I am active with local creatives, and am a partner at a nearby art gallery.
People often say that transplant is simply trading one disease for another, and my journey feels like a true manifestation of this sentiment. With that said, the most important thing to me is that I’m still alive to be doing what I love, surrounded by the people that I love, no matter what that looks like.
I have titled this column “Blooming Hope.” Similar to the buds that are rising up with the tender care of springtime, I believe that we have the ability to nurture life back into the hope we carry — hope that does not result from our external circumstance, but grows from within.
While my journey has brought me into the darkest of spaces, I still nourish this hopefulness with vigor. I am eager for that to be at the forefront of each story I share, as hope can be the slimmest bit of light that we require to survive. I’m excited for us to walk together as I explore my life with PH, and the life that I have fought to live after it. Perhaps we can both find some goodness here.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.