When I think of 2020, I think of one of the worst years of my life. I spent 73 days in the hospital and almost died. I had sepsis twice from central line infections, caught covid-19 at a doctor’s appointment, and was hospitalized many times due to hyperemesis. I was severely malnourished and was struggling with issues from both my j-tube feeds and TPN. I went through half a dozen central lines, had multiple surgeries, and experienced more traumatic events than anyone should ever have to. And if I’m being totally honest, I still haven’t quite healed from the trauma. I have spent the last six months trying to process my feelings over everything that happened last year, but especially what happened last November and December.
In November I ended up catching sepsis for the second time in 2020, but this time was much worse than before. I was not feeling well for a few days and went to my local doctor to get checked out. I brought up the possibility of having a central line associated blood stream infection (CLABSI) but my port site looked fine. She thought I had a virus and told me to call in 3 days if I wasn’t improving. 48 hours later, I ended up going to the emergency room due to severe nausea and vomiting, abdominal pain, awful muscle pain, a killer headache, and high fever. I was admitted to my local hospital with sepsis. Initially, they were confident about handling my care, but I continued to get worse. When they saw the condition of my heart, they transferred me to Penn who did an amazing job handling my case. Because of the sepsis, ended up having a minor stroke, developed endocarditis, and had renal and splenic infarctions. I ended up spending three weeks total in the hospital.
During that time, I was told that I will need open heart surgery in the near-ish future. The infection ate away at one of my heart valves causing severe mitral valve regurgitation. I was told if I were any other patient, they would replace my valve right then but having mitochondrial disease severely complicates things. I will have high risks with both mechanical and tissue valves and the longer we can put off the surgery, the better. Right now, we are trying our best to manage the symptoms with medication.
When I came home from the hospital, my grandfather died. Although we were prepared for his death as he had dementia and was receiving hospice care, the circumstances around his death were not ideal. My grandfather went into the hospital for a few days, and the day he was coming home, my grandmother broke her hip and was admitted to the hospital. They didn’t get to see each other. She needed a hip replacement and rehab after, so she could not be home with my grandfather in his final days. They were happily married for 71 years so this broke my heart. And because of my recent hospital admission, my illness, and the pandemic, I was robbed of going to my grandfather’s funeral.
Shortly after, I ended up catching covid-19 and spent another two weeks in the hospital. I went to the ER because I thought I stopped responding to my antibiotics and was shocked when I tested positive for covid19. I had only left my house once since being discharged from Penn and it was to go to a doctor’s appointment, so I really didn’t think I had covid going in. Luckily, my lungs weren’t seriously affected by the virus. Although, I did end up with mild covid pneumonia and had to sleep sitting up because I couldn’t breathe at all if I was laying down. Severe vomiting and pain were by far my worst symptoms. I am not lying when I say coronavirus brought the worst pain I have ever experienced, and trust me, I know pain. I do all my surgeries without anesthesia or narcotics, and the pain from covid-19 was so much worse than being cut open. The vomiting was also some of the most severe vomiting I have ever experienced. I was vomiting around 50x a day despite doctors throwing every antiemetic they could at the nausea. It was torture. In addition to covid being so hard on me physically, it also took its toll on me mentally. I was in isolation, and only had contact with doctors/nurses for around 30 minutes a day. Anyone who came into my room was in full PPE and tried to spend as little time in the room with me as possible. I spent Christmas in a hospital bed, sick and alone.
2020 left me broken and so far, I feel like I have pretty much spent all of 2021 trying to recover from the previous year. I’ve had countless doctors’ appointments, around half a dozen procedures, and have been working hard on my mental health. I’m exhausted but trying to push through.
I think the greatest thing I’ve come to learn from everything that happened in 2020 is that it’s ok to not feel strong during your lowest moments. It’s ok to break down and just endure the bad things that are happening to you. Feeling strong is not the same thing as being strong, and breaking down during the low points is a completely valid response.