COVID-19 and a Bleeding Disorder

Hello, my name is Lupe Torres and I live in the city of Las Vegas, NV. I have three children: Alex (25), Jesse (19) and Michelle (24). My daughter has vWD type 1 and Factor V Leiden. My son Jesse has Factor V Leiden and a rare bleeding disorder. About a year ago when the COVID-19 pandemic started, I began to get very concerned just like everybody else. I began to have so many questions and very few answers. There was not much information about the virus nor how it could be treated. When the country had to be completely shut down due to the pandemic my concern grew more and more. I started to worry if there was going to be enough factor available for my daughter and how quickly she was going to be able to get her factor delivered in case of an emergency. My fear started to grow more and more as the days were going by. I started asking myself, if my daughter and son get infected how are they going to react and how will this virus affect their bleeding disorder. I remember spending too much time thinking about the situation. The fear was real, I was worried about so many things. During the first months after the pandemic started my daughter was pregnant, expecting her first baby. After she was told she wasn’t going to be able to be a mom somehow God blessed her with a beautiful baby girl! My 18-year-old son Jesse was in high school, and I was worried about what would happen if he went to college in another state. Would he have easy access to an HTC? I had so many doubts and fear of the unknown.
The first few months we were very responsible and took all the suggestions and rules imposed by the state. I remember attending many zoom meetings, with doctors who specialized in bleeding disorders, regarding how this virus would affect the lives of people with bleeding disorders. After joining so many sessions many of my questions were answered and my fear and anxiety were not as bad as it was at the beginning. We decided to start trying to live a normal life free of fear of the virus. We decided to disconnect a little bit from the news, radio, social media, and even educational conferences since all I was hearing was the phrase “COVID-19.” We started to spend more time as a family, and we focused on just taking one day at a time. I felt a peace of mind knowing that we were all either working or studying from home. In my mind I felt that somehow, we were protected.
Over time my daughter had her baby and we started focusing on the baby but, despite of all the precautions we took, what I feared most happened. COVID-19 entered our home, infecting a part of my family. My daughter was infected with COVID-19! When I first found out she had the virus, I was so scared I had a deep pain in my heart. I did not know how her body was going to react to it. I remember checking her temperature all the time, her oxygen levels, asking her if she was feeling ok. The first few days everything was ok, she did not really develop any symptoms, so I started to feel a relief in my heart. I had never imagined what would come next. I remember one morning all the sudden she developed a mild fever followed by chest congestion, then she began to feel so tired. As the days passed her symptoms remained the same, she didn’t really want to eat. Those days were very difficult for all of us especially from her since she had to stay away from the whole family, as well as her baby for periods of time. The most frustrating thing was not being able to do anything to help her or make her feel better.  This lasted several days. Her temperature was manageable but, almost 12 days after being infected, all of the sudden she started vomiting, diarrhea, feeling nauseas and coughing. I was so scared I didn’t know what to expect or how to help her. I felt so frustrated. To our surprise, just like her symptoms came out of nowhere, they went away fast too. She still feels discomfort in her lungs and sometimes has difficulty breathing, but overall she is doing ok. Thank God the virus did not cause any bleeding problems.
Today, I thank God for protecting and taking care of my daughter from an unknown virus. I learned that apart from the fear we had for COVID we also develop so much anxiety, stress, anger and confusion towards the unknown. All of this was so real and it changed our lives forever. COVID-19 not only affected us mentally but also psychologically and emotionally. Today we continue to try to live our lives as normal as possible. We try to spend more time together as family and enjoy those special moments. We learned to stop worrying about things that are beyond our control and to live every moment as a family to the fullest because when the man up in heaven decides to take us home, all we take with us are our memories.
The fear of COVID-19 is real but the most important thing to keep in mind is, no matter what, stay calm, use the tool of advocacy in every moment of your life, try to remain positive and stay away from things that may confuse you like social media or even the news. Stay in touch with your doctors, ask questions if you do not know something and don’t let your mind play games with you. Most importantly, continue to educate yourself through the conferences offered by organizations like HFA. Remember the greatest tools in situations like these are knowledge, education, advocacy and mainly taking care of your mental health! Remember, if we as parents are doing ok, our kids will be ok as well.
Lupe lives in Las Vegas with her husband Hector and their children Michelle, Jesse and Alex.
Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.