In the months since COVID-19 became part of our daily vocabulary, transplant recipients, along with their families and caregivers, have been forced to navigate many unknowns that come along with the emergence of a new and virulent virus. With so little known about the virus, particularly in the early days, the adjustment for recipients and their families has been significant.
As we all look towards the future, holding on to hope and optimism, a lot of questions remain around COVID-19 and immunosuppressed individuals. As science learns more about the risks, implications, and outcomes of the virus in the transplant population, we hear from one transplant family who experienced the COVID-19 firsthand. We recently had the opportunity to speak to Amanda Sewell about her family’s fight with COVID-19.
Describe your family’s experience with contracting COVID-19
In late October 2020 I was infected with COVID-19. Around the time I contracted the virus, there were two confirmed cases of COVID-19 in students who were part of the classroom where I work. The diagnosis was incredibly disheartening. I diligently wore a mask, constantly washed my hands and sanitized, and practiced social distancing as much as my job allowed. I was the first in my family to be infected and my positive test result prompted my other family members to get tested. This included my son Ian, a liver transplant recipient. Unfortunately, everyone’s test came back positive, except for my older son. As a family of five, we kept a small bubble throughout the pandemic, only extending it to include my mom.
I was terrified to learn Ian had COVID-19. Immediately, I reached out to his transplant team at BC Children’s Hospital. Ian was the first pediatric transplant case of COVID-19 in the province, so his team had limited information to offer. They advised us to monitor his symptoms, treat him at home and bring him to the hospital if his symptoms worsened. Thankfully, Ian’s symptoms were largely restricted to fatigue and a stuffy nose. The rest of the family did not fare so well. I experienced debilitating muscle aches, extreme fatigue, a loss of taste and smell, and shortness of breath. My husband and mom had a similar experience. It was my 18-year-old daughter, Madison, that had it the worst and nearly ended up in the hospital. She had a high fever for ten days, along with vomiting.
Now that the acute period of our illness has passed, we continue to grapple with the long-term implications of the virus. It’s taken a significant toll on our family. We all continue to deal with the lasting effects of our infection, including fatigue, brain fog and forgetfulness.
What would you like others to know about the virus?
The virus is real. So much is still unknown about COVID-19, especially the long-term effects. We need to do all we can to protect ourselves and each other. Wear your mask, keep your bubble small, practice good hand hygiene and limited exposure to large crowds. Of course, these things are not new to transplant families and something most families did long before the pandemic.
How has the pandemic impacted your life?
This pandemic has certainly added another layer of stress to our lives. Stress that we do not need as a transplant family. Every morning we get up and go to work and hope we don’t bring this virus home again. We only go grocery shopping once a week. When not at work or school, we are all basically housebound. The mental health aspect has proven challenging and has been hard to deal with for all of us, but even more so for Ian. He suffers from anxiety due to medical trauma and over the last year it has only intensified. He worries about getting sick again, being admitted to the hospital and dying from COVID-19. He also fears his family being reinfected.
All the time off work to recover has had a negative financial impact on our family. There are always costs associated with Ian’s care, including the many trips we regularly make to BC Children’s Hospital. The combination of these two factors has led to additional financial strain and stress.
How has being a transplant family affected your outlook on the pandemic?
We are frustrated. It is difficult to see and hear people who don’t believe COVID-19 is real or something to be taken seriously. Adhering to the provincial restrictions is not a choice for us, we view it as essential. We do everything possible to protect our family and keep Ian safe. It is hard to know that some people disregard the guidelines or view them as optional. We really need to work together to get through this and keep our most vulnerable members of society safe.
What is your hope for the future?
I am eager for researchers to better understand the virus and continue to develop safe vaccines that are approved for use in transplant patients. I look forward to the day we can safely resume our pre-pandemic lifestyle and once again, welcome people back into our lives.