On September 5, I attended the 5th annual Patient Safety Academy. This event was another great learning and teaching time for me. Every year this event improves and the speakers are talking more and more about the things I have been fighting for. I can relate! FINALLY! I don’t feel alone anymore.
This year, my colleague Jerolyn Ireland RN, and I brought the patient’s voice to the conference. We did a co presentation called Nurses as Patients, When Harm Happens. Jerolyn’s personal healthcare harm story is downright incomprehensible. I first met her about a year ago. She contacted me through this blog. She was looking for someone who understood MRSA or Methicillin Resistant Staphylococcus Aureus and the harm that it does.
In 2012 at the age of 70, Jerolyn was actively employed as the Public Health Liaison Nurse for the Maine Tribes. She had no intention of retiring until she was around 75 years old. But, out of the blue, she suffered a grand mal seizure. When she fell, she broke both of her shoulders. She required surgery on the shoulders and became immobilized with both arms in casts and across her chest. During her hospital stay she suffered through bilateral Deep Vein Thrombosis, a urinary tract infection, hallucinations and skin ulcers. With all of these complications and problems she was shipped off to a Rehabilitation facility, an affiliate of the Hospital. During her stay one night, she called for assistance to use the bedpan, remember, both arms were immobilized. She was told to pee in her bed because the nurses were too busy. I cannot begin to imagine the humiliation and degradation that Jerolyn experienced.
After she rehabilitated, she did return to work for about a month. But, she also learned that the cause of her seizure was a benign brain tumor. Her neuro surgeon assured her that she would be back to work within 5 or 6 weeks after removal of this tumor. This was when Jerolyn’s real problems started.
Within a few weeks of her surgery, she got a surgical site infection. When she called her doctor, he said he couldn’t see her right away. No cultures were done. The infection progressed. At one point, when the doctor did finally see her, he prescribed Zyvox, a hugely expensive oral antibiotic. Her son went to pick up the medicine and the cashier asked for $1200. That isn’t an amount of money that most of us carry around. So, they gave her Bactrim, which is sometimes effective with superficial skin MRSA or boils, but her infection was a tough one, and at this point, it still had not been cultured. Her troubles continued, and multiplied and got worse. By the time I met Jerolyn, she had 5 additional skull surgeries, long term antibiotic treatment, more rehab and home nursing and physical therapy, and several more seizures.
Jerolyn went from being an engaged and widely respected and highly regarded professional nurse, to her current state of medical disability in just a few years because of healthcare harm. She told her neurosurgeon about her infection and he blamed her C Pap machine (used for sleep apnea) for the infection (that was the first time I have heard that crazy excuse for a preventable MRSA infection). When she wrote a letter to the Hospital where she contracted the infection, she got a standard “fluff” letter in response. That Hospital, and the many other services she has needed after the harm, continue to bill her. And she can’t pay. So they have bill collectors after her. She has lost all of her hard earned possessions…..all except the most important one…her life. And Jerolyn’s life is precious. She is one of the most generous, courageous women I know. Hang on Jerolyn because you and I have work to do!
Jerolyn will likely file for bankruptcy, when she can find the money to pay for it. She has lost her home, her car, and she has even sold her jewelry. She gets wads of medical bills every day. Early on, she tried to keep up with the bills by paying with credit cards, and those bills come in regularly too. She struggles to pay for food, but does not qualify for food stamps. During her seizures, she has damaged some teeth, but cannot access and pay for dental repair. This financial and emotional harm has also rippled out to her son and family, because he is her steadfast advocate and POA.
I was so humbled and proud to stand with Jerolyn Ireland at the Maine Patient Safety Academy and raise awareness of the impact of healthcare harm. Most of this harm is invisible to professional caregivers. It is unlikely that any of her caregivers from her hospital stay for her first brain surgery know a single thing about Jerolyn’s struggles. The ripple effects of harm come in many forms and they multiply and accumulate at an amazing speed. Jerolyn and I worked very hard for several weeks to prepare this presentation, but I learned so much from her and we have become friends. Just a few weeks ago, she was readmitted from 2 more grand mal seizures. When I asked if she wanted to cancel our presentation, she said no, that she absolutely wanted to tell her story. So, her dedicated son Mark, a paramedic, drove her to Portland from Houlton…a 4 hour drive, and we, all three of us, brought the real story about healthcare harm and the patients’ voice. Jerolyn’s determination, optimism and sense of humor is amazing.
Only in America. It only happens here. Medical debt is the #1 cause of bankruptcy in the US. Healthcare harm is the #3 cause of death in the US. This is a huge SHAME ON US!