Reprinted by permission of Dr. Alin Gragossian. Original title “Restrictions” follow her transplant journey at A Change of Heart
Last year, after my transplant, I had restrictions.
People would ask me all the time, “Okay, like you’re good now, right?”
And I never knew how to answer that question.
Considering that I am not physically on my deathbed, but I require medications every single day for the rest of my life to make sure that my heart doesn’t stop working on me, I have to forever be careful of salads, sushi, handshakes, sporting events, being in large crowds in general, keeping my distance from you, making sure I have an extra mask on me at all times, constantly washing my hands, sometimes I forget things, there’s this one thing with my sternal wire, oh excuse me my alarm just went off—
I guess I am good now, yeah.
I was taking a train somewhere last year and there were not many seats left except for the two seats in the front of the car left for people with disabilities. I wanted the least “crowded” area of the car and didn’t want to be sitting next to a [virus and bacteria carrying] stranger. I was still just a few months out of transplant. I stood in front of one of them, didn’t even sit on the seat, when two women came by.
“These seats are for elderly or disabled people.”
I told them I was sorry. I got out of the way.
“You young people, you don’t need these seats. My mom has arthritis and I have to sit with her so we are taking these seats.”
“That’s fine, I wasn’t sitting there, I was just standing in front of it.” I didn’t even want to explain the whole me-distancing-myself-from-everyone thing at this point. No one understood this concept. I took out my mask and wore it for the train ride, while standing in place.
She looked at me. A lot of people did when I wore a mask.
“What are you? Sick?” she chuckled.
I annoyingly said, “No, I got a heart transplant a couple months ago and this is the first time I’m on a train. I have to wear a mask everywhere and I keep forgetting to wear it.”
I think she was embarrassed after this. She turned beet red, and apologized multiple times throughout the train ride. She offered her seat to me. I kindly declined.
And you know what else?
I hated wearing my face mask. I wore it all the time when I first got discharged. When I first started working clinically, I pretty much wore at least a surgical mask (or N95 mask) at all times in the hospital. My face would break out in pimples. My ears hurt from the ear loops. I had headaches. So many headaches. And how did my doctors think I was supposed to drink all this water if I was wearing a mask the whole time… I have accidentally spilled water all over myself many-a-times while trying to drink water through my mask. Yep.
Stores might as well be closed, I thought to myself during my quarantine. I couldn’t get my nails done. Infection risk, they’ll be touching me, close contact. I couldn’t go to TJ Maxx and buy all of their discounted anti-aging face creams. Infection risk. Too many people around me. My discounted anti-aging cream obsession had to be put on hold for a few months.
I had to get used to exercising at home, especially if the apartment gym had more than 1 or 2 people working out in there. I bought a stepper off of Amazon and watched YouTube videos on how to work on everything from tight butts to arms to abs all from home. Because heart transplant patients’ number one worry should always be tight butts and abs.
I would walk from my couch to my bed. My bed to my couch. Take selfies. Post on Twitter about taking selfies. Read. Board review. Walk to my couch. Look outside. Binge-watch true crime everything. Read Board review. Take selfies. Rinse, lather, repeat. Google Hangouts and FaceTime were awesome— but even those got boring. There just isn’t much going on, I love my new heart, it wants to be OUT out with you all already! I would say.
There was a little bit of anxiety that came with going back to work in the beginning. We see thousands of weird infections in the ER… who knows what I could be exposed to… could this be the last patient I ever see, as I would intubate an elderly patient in respiratory distress (in a mask and yes, eye gear too, always). But it got better with time. I was always very careful about my use of PPE, and my colleagues all knew about my situation and never hesitated to help me out if I asked for it. Ever.
My home became my everything. My own space became my sanctuary, some distancing from others was good… and this became an incredible part of my recovery. I learned so much about patience and myself. And now, I just feel like all of this is normal for me. None of it bugs me— I don’t feel uncomfortable in my space, I don’t feel loneliness at home. I am a little anxious about COVID-19, sure, but overall I know that we will get over this as long as we continue to work together.
Once this is all over, you will never take advantage of being outside with people. You will never take advantage of busy streets with crowds, people laughing, people yelling. You will never take advantage of having wine and dinner with your friends, of the waiter coming to your table asking, “And would you like to hear our specials for this evening?”
You will never take advantage of being able to breathe fresh air without a mask ever again. And you know, your ears do eventually stop hurting once you get used to the mask. ♥️
Alin Gragossian is currently an Emergency Medicine resident physician at UPMC Pinnacle in Harrisburg, PA. She plans on continuing her medical training in Critical Care Medicine at Mt. Sinai Hospital in New York City this summer. She received an urgent heart transplant at the University of Pennsylvania in January 2019 after a sudden illness.
Follow her transplant journey at her blog, A Change of Heart
For all of our success, there are more patients every year who need our help. Help us fulfill our mission.