An Avoidable Infection Made Me Speak Up for Better Care

By Millie Riley

Millie Riley has played a role in countless patient stories, but always from the provider’s side. A nurse for 41 years, she began her career in the emergency room, moving through management to eventually become vice president for patient care services at a large suburban hospital. She saw things from a different perspective when the situation reversed and she became the patient.  As a Medicare beneficiary, Millie fought C-diff--and more--and won.

In 2003, my husband and I retired and left our Missouri roots to head for our new Arizona dream home. Just nine months after moving, I ended up in intensive care in a medically induced coma for two months.  I was operated on for a ruptured diaphragmatic hernia and had many unexpected complications. My family was told that I likely would not live.

I initially received the best care possible, despite the fact that the physicians had not treated my specific diagnosis before.  My entire family was respected and cared for by my doctors just as much as I was. Most importantly, I appreciated the constant communication between the hospital staff and my family. My loved ones always understood the nature of my care while at the hospital.

Eventually, I was transferred to a rehabilitation facility to fully determine the extent of my physical abilities. I found each morning challenging and emotionally taxing due to my tracheotomy and the fact I could not move my arms or legs well.  Following an extensive evaluation, my doctors created a treatment plan. My family and I were excited and anxious to proceed with rehab.

Unfortunately, while at the new rehab facility, I incurred an additional complication. I was diagnosed with Clostridium difficile, commonly known as C-diff. Several of my physicians told me that they were trying to find an antibiotic to stop the infection; they weren’t sure which medication might have initially caused it.  I also developed blood clots in my arm when I fell out of bed after a bed rail had been left down. To make matters worse, the complications from C-diff made it impossible for me to continue therapy for several days.  I 

I began to realize that my care at the rehab facility was sub-standard. I was not getting better, I was getting worse. The communication between my providers and my family was poor. I was told that C-diff was common in some medical facilities. Also, I became increasingly concerned about developing bedsores when my therapy was halted. The staff did not follow the correct procedures to turn me every two hours due to the complications of C-diff.

Finally, I requested a meeting with the nurse administrator and told her my story. Only after I had the meeting did my care start improving. I pushed myself, learned to walk again and was transferred to a more aggressive rehab facility where I eventually made a full recovery.

Given my experience directing hospital care as a nurse for several years, I never dreamed that I would be in this position. I’m aware that hospitals have procedures in place for providing care, and now I value them more than ever. In hindsight, perhaps if staff had started following procedures more carefully, it would have saved me from needless pain and suffering.  I firmly believe that better education, understanding and communication could have hastened my recovery and saved me from the humiliating experience of C-diff.