Patient Story

Rachel Battaglia

As a patient with Common Variable Immune Deficiency, I have had the unfortunate experience of getting sick from previous hospital admissions, especially post-operations.  

In preparation for a major jaw surgery, my surgical team had been made aware of my previous medical history and requested a private room with a private bathroom to reduce exposure to others in the hospital. This was extremely imperative as my procedure was occurring in my mouth and nose, leaving many open incisions for possible infections. Following surgery, I was intubated for an entire day due to airway swelling and upon transferring from the ICU, I was told I was being moved to a room with a roommate. I reminded the hospital staff that I had an immune deficiency. However, the charge nurse had told me that they will not cater to my health needs. 

I had to call the on-call surgeon to explain on my behalf my need for an individual room. My emergency contact also called and spoke to the charge nurse to express the prior infections I have gotten from hospitalizations. After finally agreeing to transfer me to an individual room, I was transferred to a room where a patient was just discharged with contact precautions. To my disbelief, the patient’s gown and clothes were still in the room and it was clear that the room had not been cleaned at all. I refused to enter the room even with staff reassurance that it was okay for me to enter without the room being cleaned. I waited several hours in the hallway for the room to be partially cleaned. 

As a result of this hospital experience, I ended up with a severe, rare, triple bacterial infection that took seven months to clear and has permanently altered the results of my surgery. It has left me with severe scar tissue on my face, causing a deformity. Till this day, I still can not breathe properly due to the consequences of this infection.