In February 2023, a 31-year-old Lisa Fleury went to the hospital for stomach pain that turned out to be appendicitis. She returned home after surgery, assuming that everything would go back to normal.
“It turns out that, during that visit, they gave me some strong antibiotics that triggered my genetics to trigger my warm antibody hemolytic anemia (wAIHA),” she said. “From then on, my health slowly declined.”
Though Lisa was on a strict diet and exercise regimen, over time she found herself with a rapid heart rate, and difficulty breathing. Ultimately she went to the hospital concerned about her heart. She received her wAIHA diagnosis during a 6 day hospital stay that required two emergency blood transfusions.
Soon after, Lisa’s doctors started her on prednisone, Lisa was completely unresponsive. Next, the doctors tried rituximab. “The first time, my throat closed up and it made me start wheezing. They had to give me rescue Benadryl. The next time, it felt like my fifteen pound cat was sitting on my chest. My lungs were so tight.”
Lisa chose to seek support from an allergist to try and help with the bad reactions she continued having.
“I told him that I was taking this chemo for an autoimmune disorder. I asked if there was anything he could think of to make the chemo easier, and he literally looked at me in awe and was like, ‘You read about these things in medical school but you never actually think you’re going to meet someone like that.’” That’s how rare this condition is, even the doctors who know exactly what it is, how to treat it, and what is happening, never expect to encounter it in the real world. He did snap into full speed ahead after that though, he suggested antihistamines because ritixumab causes a synthetic allergic reaction so he was helping stop the allergic reaction and he made it so I could breathe during treatment. Then, on a follow up visit, I learned he continued researching into wAIHA in his free time to be better able to help me.” she said.
Still, despite these positive trends, Lisa is yet to return to full-time work. She’s having to find ways to make ends meet because she’s unable to work the way she did before wAIHA. With this available time, she’s focused on the care she’s receiving.
“I’m more of a thinker than a feeler. I’m someone who gets in a hard situation and thinks ‘What am I going to do about this? What’s the next step?’ I need to be actively involved in my health care,” she said. “So I always recommend that people do their research and look into available treatments. And I always think that therapy is a good idea, too.”
Today, Lisa is 32-years-old and is nearly finished with her undergraduate degree in psychology. She will soon begin her master’s to become a licensed professional counselor. In the midst of all of this, she also keeps a keen eye on the various wAIHA-related clinical research taking place around the world. With all of this on her plate, Lisa’s very cognizant of the limitations that wAIHA has brought into her life.
“What I really need to pay attention to now is that recovery does not mean remission. Even if I do go into remission, there’s a 70% chance that I’ll need chemo again,” she said. “And if I have this all taken away from me again – that is going to emotionally devastate me. So I’m trying not to jump back into everything full-time, trying to remember that this all could come down like a house of cards. I feel like it’s my responsibility to keep that from happening while also not fully understanding if there is anything I can actually do to keep it from happening.”
