Our family has experienced this pandemic with the very real fear that comes with my daughter, Reese, being a member of the vulnerable population who is at increased risk of getting a severe case of COVID-19. Reese has already been through so much to get to where she is today.
After being diagnosed with hypertrophic obstructive cardiomyopathy at age 9, my now 12yo daughter was blessed with gift of a new heart on October 5, 2018. The first year after transplant was rather daunting with frequent cardiac cath procedures, cardiac biopsies, and blood draws every two weeks for a long time. She missed most of 5th grade because of her immunosuppression and was so excited to return for the last month of the school year last spring.
The precautions that people are now taking have a strong sense of familiarity for us. We have been taking these precautions since transplant. She did not leave the house at all for the first 3 months and has been wearing a mask in public places since the transplant. We have a hand sanitizer pump on a stand in the kitchen for easy access. Surfaces have been cleaned routinely with disinfectant since transplant.
There have been differences for us though during this pandemic. I am a medical worker and thus still going to work. My husband is considered essential and still going to work as well. Our garage is now considered our "hot zone" and Reese is not allowed in there. The hallway from the garage and the laundry room is considered our "warm zone" and Reese is not allowed in there. We now change clothes in the garage when we get home. Work clothes go directly to the washer on a sanitary cycle with laundry sanitizer added. Shoes stay in the garage and get disinfected along with phones, work badges and anything else that has been to work. My work bag stays in my car. We both keep hand sanitizer in our car. We wear masks. Boxes from deliveries don’t go past the laundry room. I disinfect surfaces and all doorknobs every evening. However, the biggest difference now is I can control my own home and my own environment for her for the most part but I cannot control the actions of others. I cannot make people stand in social solidarity and practice social distancing even if they are lucky enough to be among the healthy and less vulnerable. Some people understand that you practice social distancing and stand in solidarity with the vulnerable to protect them, and yourself in the process. But sadly, some do not understand and continue life as usual. That is frustrating to see. If people could see what these heart warrior children have gone through just to survive they might understand the fears of a mother of a transplant child during a global pandemic of unprecedented proportions. I try not to let my fears and anxiety overtake me but I do worry. It could be catastrophic for her if she were to catch it. Please do your part for these children, for the elderly, for all vulnerable groups, and to protect healthcare resources. Stay home. Take precautions. This transplant mother would very much appreciate it. With heart, Lori Evans Reese's Mom