Honest Thoughts on Connecting with the Transplant Community
The clock struck 2 AM, my face illuminated by the blue light cell phone glow. Visiting hours had been over for a while, the nurses gently paced the hallways, and the sound of my roommate’s snoring filled the room. The entire transplant ward had fallen into hushed silence, but I couldn’t join in its rest.
Here I was, a month post liver transplant, in an entirely new world I didn’t know how to navigate. When they sent me out of the OR with sutures and lines, they didn’t include a guidebook for how to live life with somebody else’s organ taking up residence in my body. When the transplant coordinator sat beside me with a list of medications I needed to take for the rest of my life, in order to not reject my new organ, she didn’t give me a contact list for people to reach out to when I needed somebody to understand the frustration of not being able to apply eyeliner because of tacrolimus tremors, or when having a scar that extends across the entire length of your abdomen offers a blow to your self-esteem.
And so, I did what any savvy millennial would do, and I took to social media. I googled different combinations of the word ‘liver transplant’, ‘organ donation’ and ‘under 35’. I scrolled through Instagram hashtags and Facebook groups, just hoping to find one person who shared a similar story. I wanted to find one person I could relate to, one person who was living life the way I was, one person who understood and was honestly sharing their story so it could shine light on the road that lay ahead of me.
Slowly, I began to find them. Few and far between, posts buried deep on the internet. I filled their inboxes with messages, asking about everything from meds to relationships, and they kindly responded with so much grace, welcoming me into their fold. But I soon realized it wasn’t enough. It shouldn’t be this hard to find resources, connection and support.
A transplant friend I met in those dark Instagram scrolling days messaged me one day about a new platform she was working on, asking if I wanted to get involved. It was called TransplantLyfe, she said, and it was a place to connect. No longer would we be destined to browse the internet in solitude hoping to find another beacon to match ours, but there would be a platform where we could all find one another without the added hassle of sending out our signals and just hoping someone found us when they needed support.
I jumped at the opportunity. And from the first time I logged in to TransplantLyfe, I knew it was what I had been searching for. Out of the woodwork came so many patients, people who shared my story and understood the ins and outs of the transplant world. Each at different stages of our journey, we shared insight and inspiration for what lay ahead. The forums served as a great location to ask my questions, and get answers, to find support. I could chart my medical information I needed to keep and send to my doctor, which was so convenient considering I’m a little spacey these days and tend to lose everything I write down.
The more time I’ve spent on TransplantLyfe, the more I understand what a lifeline it is. I see how, if I was given this resource in the days after my surgery, it could have spared me from feeling so alone and isolated. I am grateful for the gift we have in one another, and the way it has ignited a spark in me to take initiative in not only my own medical care, but in raising awareness for organ donation and in acting as a support for other transplant patients.