PH, transplant, and COVID-19 taught me how to live in isolation
Caution is key, as is finding online friends and fun activities
When living with a chronic illness, countless situations arise that require one to prioritize health above all else.
When I was growing up and my friends and peers were expanding their horizons, I often decided to take a back seat to focus on self-preservation. These sacrifices became even more common when I attended college. I’d stay back while my friends went to Colorado for a concert, knowing the altitude would be hard on my lungs. When they spent a month traveling in Europe, a trip my doctors never would’ve approved, I remained on campus and studied. When weekend parties involved drinking alcohol, I was the designated driver because alcohol made me sick.
Missing out on these experiences magnified the isolation I was already feeling due to my pulmonary hypertension (PH) diagnosis. I hoped that a heart and lung transplant would bring me a little closer to the normalcy I craved.
My transplant in August 2018 didn’t go perfectly, and the recovery brought a new level of isolation I never could’ve imagined. It wasn’t until the fall of 2019 that I started to find a new rhythm.
As I grew stronger, I began to rebuild the community I had lost. I reintegrated with my former place of work and found myself returning to the world I had left behind. Social interactions slowly resumed, and while my life looked very different, I was happy to feel like I was finally back.
Soon after that, in March 2020, COVID-19 changed everything.
The COVID-19 pandemic was unexpected and terrifying for me as a fragile and immunocompromised transplant recipient. I never could’ve predicted the impact it would have on my life.
Since then, I’ve become even more protective of my health. Even now, as we enter the fifth year of COVID-19, I live a life of extreme caution. I attend doctor appointments and occasionally meet up with trusted friends and family. Those gatherings are always outdoors, Minnesota weather permitting. But I spend most of my days within the walls of my home.
It’s certainly not what I would have chosen for myself, but after fighting respiratory syncytial virus last year, which caused significant setbacks to my health, I know that avoiding illnesses, especially respiratory ones, is vital to my long-term survival. While I have difficult days, these thoughts are what help me get by.
Living a life I love
One of the gifts of spending time alone is having the chance to get to know yourself. In adulthood, I’ve built a rich interior life that I love to live. Simply put, I enjoy spending time with myself.
This is partly due to the many solo activities I enjoy. I’m an artist, a writer, a knitter, a reader, and much more. I’m grateful to always have new pursuits that keep my hands and my mind busy during quiet days at home.
Since my transplant, I’ve needed a level of care and support that requires me to live with my parents. At the end of 2020, we moved into a new home that allowed me to have the top floor to myself.
This combination of privacy when needed and support and companionship when desired is a monumental privilege that I cherish. I’m also fortunate to have a brother and sister living nearby who visit at least once a week. This access to my immediate family is a game changer. I can’t imagine living alone in this season of my life.
I’ve also maintained a close circle of friends through the years. These are people I intimately trust to prioritize my health. I know they’ll quickly call off plans at even the slightest indication of illness in their families. I feel comfortable interacting with them regularly and in person.
Other interactions
I’ve also pushed myself to grow my digital network. I have several long-distance pen pals whom I interact with on social media or by text. Many of these friends are also chronic illness warriors who can relate to my circumstances, which reminds me that I’m not alone.
I do fun things like taking art classes via Zoom and participating in monthly book clubs on an app called Fable. These activities offer me a way to interact online with others who enjoy the same things I do. The takeaway for me is that if you get creative, you can access the world, even if you can’t be part of it physically.
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.
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