History of MRSA Survivors Network
Jeanine Thomas - Founder, National Spokesperson, Conference Speaker and Consultant
A VOICE FOR CHANGE AND HOPE
MRSA Survivors Network (MSN) was founded in January of 2003 and Jeanine started to raise the alarm about MRSA infections in 2002 as she contacted her state legislators and public health officials about her personal experience with MRSA. MSN was the first patient/consumer advocacy organization in the U.S. and was founded in January of 2003 to raise the consciousness concerning the MRSA epidemic and other multi-drug resistant healthcare-acquired infections. In 2009, she founded the annual global observances, World MRSA Day – October 2, World MRSA Awareness Month and in 2011 founded Int’l MRSA testing Week -April 1-7.
MRSA Survivors Network has been the key catalyst for change on an international and national front with its groundbreaking crusade and mission to stop MRSA deaths and infections. MSN was the first organization to initiate and pass mandated screening and public reporting legislation in the U.S. (Illinois) and worked with other advocates in other states that followed her lead. MSN partners with healthcare professionals, healthcare companies and patient/ consumer organizations.
As a MRSA survivor herself, she experienced an extremely painful and traumatic near-death experience and a prolonged chronic illness from a routine surgery. She never wanted anyone else to go through what she had and wanted to stop these infections from happening and draw attention to the epidemic.
She was the lucky one, she survived. The hundreds of thousands of lost souls who were allowed to slip away in healthcare facilities from a preventable disease haunted her and she wanted their deaths to be not in vain and wanted to become their voice. She vowed to fight for awareness and to stop the deaths and needless pain and suffering from a disease that is a “never event” – a medical error.
In December of, 2000, I became critically ill after being infected with MRSA during surgery to repair a broken ankle and had hardware put in. I was home two days after surgery and had terrible pain and went back to the ER and when they took off my cast, my foot and leg was hugely swollen and red, with blackened tissue around the incisions and large amounts of pus oozing out of the wounds. I was horrified and the pain was unbearable. I was admitted and the next six days were a blur of surgeries as the infection was necrotizing (eating) my flesh and I lapsed in and out of consciousness. I was terrified that my leg was going to be amputated. The infection had entered into my bone marrow, giving me the disease osteomyelitis. I could no longer open my eyes, speak or move. By the fourth day, I knew I was dying and was fighting as hard as I could, but could not communicate with anyone and the infection also had entered my bloodstream (sepsis).
In the middle of the fifth night my temp went from 102 to 104.5 and I went into septic shock and multiple organ failure. The night nurses were able to bring me back and I finally was given the right antibiotic (vanco), which I should have been on from the start. It was a true miracle that I survived.
My ordeal was far from over and I spent several more weeks in the hospital and many more surgeries (a total of eight) to save my leg from amputation. The doctors wanted me to go to a rehab hospital for 4-6 weeks for more IV therapy. I had several more complications with a trip to the ER from a reaction to the antibiotics and diagnosed with C. diff, another dangerous superbug and I had to take more antibiotics. I spent another five months in bed enduring excruciating bone pain. There were days that I wished they had amputated my leg as I thought that would hurt less. I suffered from depression, anxiety and post- traumatic stress from the near-death experience and all of the surgeries.
A year later, I had the hardware removed and was laid up several more months. MRSA had weakened my immune system and I suffered for five years with secondary infections and MRSA moved into my sinuses. It that would last for months and keep me bedridden and on 4,000 mg of antibiotics a day.
I spent a total of seventeen months confined to bed with infections. The bone and tissue on my leg never fully grew back because of the severity of the infection and my cartilage was destroyed as well as my ankle joint. But most important, I have my life and my leg and the drive and determination to fight for change, prevention and awareness.
During my initial infection, there was not much information on the internet about MRSA and I could not find anyone else who had gone through a similar experience and I felt alone and isolated. There were support groups for every other disease, but nothing for MRSA patients. I decided to start my organization to help others struggling with MRSA infections, raise awareness so others would not be infected or die from MRSA.
MRSA Survivors Network initiated in the U.S. groundbreaking legislation in 2006 by introducing mandated screening and reporting for MRSA. The legislation passed and was enacted in 2007 in Illinois. In 2011 legislation in Illinois passed -The MRSA Death Certificate bill, that mandated MRSA, C. diff and VRE be put on death certificates if it was a contributing factor or cause of death. MSN has been the leader in legislation for prevention of MRSA on a state and federal level.
MSN is concentrating on raising more awareness for MRSA with educational programs on prevention to the healthcare industry and to the community. In January 2009, MSN announced the creation of the inaugural World MRSA Day, Oct. 2nd and MRSA Awareness Month, October.
Ms. Thomas has appeared in the U.S. and internationally on film, television, radio and in news print articles on her advocacy work in raising awareness, her groundbreaking legislation for MRSA screening and reporting, educating and sharing her personal story of being critically ill, her near death experience from a MRSA infection and living with a chronic disease.
Her organization has helped thousands of MRSA survivors and their families all over the world cope with their struggle in dealing with this disease. She is dedicating her life to saving lives by educating the public, healthcare officials, lawmakers and the media.
Ms. Thomas is a consultant on the FDA’s Antimicrobial-resistant Drug Development Advisory Committee, “Patient Safety Champion” with the World Health Organization’s World Alliance for Patient Safety, patient representative on the Illinois state board of the Hospital Report Card Act, Brookings Institution member on the Antimicrobial-resistant Drug Development Council, WHO Director- appointed advisory panel member on the Ethics Committee for the Ebola virus.