#COVID-19 #livertransplant #vulnerablepatient #positivity
– My name is Meghan and although I am only 28 years old, I have had to survive a number of hurdles to be here today. I’ll be taking you through these hurdles of having to live with an undiagnosed liver disease, requiring a transplant and how COVID-19 has affected me as a person at high-risk.
I actually work as a corporate event planner for a global marketing company, and in my spare time enjoy traveling, reading, shopping, playing with my dog and spending time with friends and family. Growing up I had a fairly normal and typical childhood. I lived in the suburbs outside of Baltimore with my mom, dad and younger brother, was active in dance and softball, and was generally healthy.
When I was 19 years old, I started to develop abdominal pain and severe itchiness. I spent most of my college years going to different doctors trying to figure out the cause. Finally, at 22 I met a doctor at Johns Hopkins who determined the issue was caused by my liver. Around this time, my younger brother was 19 and started developing similar symptoms. For whatever reason, his liver disease had progressed much faster and he was in liver failure with liver cancer. He was listed for liver transplant and thanks to the generosity of one of my dad’s previous co-workers, received a living donor liver transplant at the age of 21.
I continued to be monitored by my hepatology team, and while numerous genetic tests were done to try to figure out the cause of our liver disease, there was never a match. In August of 2019 it was determined that it was time for me to be listed for liver transplant. Numerous people kindly reached out about being tested to be my donor. My uncle was the first person to undergo testing, and surprisingly he was a perfect match! It is very rare for the first person to be tested to be a match.
On December 10 2019, I received the amazing gift of a second chance at life thanks to my uncle donating a part of his liver to me. Overall surgery and recovery went very well for the both of us. I spent 2 weeks in the hospital and was able to go home on December 24th, just in time for Christmas. Unfortunately, 2 days later I developed an infection and had to be re-admitted to the hospital.
[restrict]Once I was released from the hospital, I continued to recover and adjust to my new post-transplant life. This included taking a large number of medications multiple times a day to avoid rejection and infections, monitoring my vitals every day, and getting blood work multiple times a week. I gradually built up to walking more often and getting out of the house more frequently. I was able to return to work at the end of February on a part-time basis. I am incredibly lucky to work for a company that has been so supportive throughout my entire transplant process, and makes the health of their employees a priority.
Unfortunately, a few weeks into being back at work the world was hit with the COVID-19 pandemic. While I was finally adjusting to being back at work and getting back into a “normal” routine, this all had to be changed. My job transitioned to everyone working from home, and I had to take extreme precautions whenever leaving the house. As a transplant patient on immunosuppressive medication to avoid rejection, I am at a very high risk for contracting COVID-19.
During this pandemic, I developed a fever and called my transplant team. While they were almost certain the fever was caused by another bacterial infection, because of COVID-19 I was unable to be directly admitted to the transplant floor and had to go through the Emergency Department for coronavirus testing. I spent 22 hours in an isolation room until my COVID-19 test came back negative and I was able to move to the transplant floor, where extra precautions were still being taken to protect patients and health care workers. At the time I was tested, the average wait time for results was 24-36 hours. Because I was considered a “Level 1” or high-risk patient, my test was expedited.
While this time in isolation was inconvenient and annoying for me, it was incredibly more difficult on the health care workers. Each time they entered my room they had to suit up in protective equipment that was difficult to move and talk in. If they forgot a piece of equipment, they were putting themselves at risk for catching COVID-19 had I been positive for the virus. Despite the scariness and severity of the situation, I admired the strength and positivity of every doctor, nurse, tech etc. that I came in contact with.
After experiencing COVID-19 testing on the front lines, I have a new understanding of the importance of following social-distancing and other government orders to slow the spread of the disease. It is extremely frustrating when I see groups of people still congregating, or people saying, “it’s only the elderly and people with pre-existing conditions who are dying.” Not only is this untrue, but it is implying that lives like my own don’t matter.
I’ve been using Instagram as a platform to share my transplant story and educate others on what it is like being an immunocompromised person during the COVID-19 pandemic. I think it is helpful to see that while someone may look “young and healthy” this may not always be the case, and to put a face to the people whose lives can be saved from following social-distancing measures and flattening the curve of the spread of coronavirus.
Throughout my transplant and now the COVID-19 pandemic, I’m often asked how I remain so positive given the circumstances. My answer is pretty simple – I do what I can to protect myself and keep myself safe, but don’t worry over the things that are out of my control. I would offer the same advice to anyone who is feeling anxious during this time of unprecedented illness and uncertainty; do the things that have been recommended – wash your hands, stay inside as much as possible, practice social-distancing – but don’t let the thought of contracting the coronavirus consume you. Take comfort in knowing you are doing everything you can to protect yourself and others, and use this time to practice self-care, pick up a new hobby, or do something you enjoy.
Looking for advice:
American Liver Foundation