MRSA Survivors Network - Chicago, Il. USA
Founder - Jeanine Thomas
The reason I started MRSA Survivors Network in the summer of 2003 was because I was frustrated by the lack of information about this disease and support for survivors like myself. This is a lonely disease. For the most part, the health care industry's attitude and position has been that of "The Code of Silence". Let's not tell patients what they are infected with and we don't want them to know that this is an incurable disease. Only one in four doctors tell their patients that they have MRSA. In many incidences it is acquired in a hospital and could be preventable 70% of the time by proper infection control. Now the deadly pathogen has spread to the community and CA-MRSA rates of infection are soaring also. Since the onset of "corporate medicine" in the 90's, hospitals have cut back on RN's and cleaning in hospitals to save money and this has caused lapses in infection control. This has put patients at great risk and compromise the safety of patients. The infection rate in hospitals has increased at an alarming rate. The over prescribing and use of antibiotics is also a contributing factor in the rise of antibiotic-resistant organisms. Many of us contributed to this by insisting that our doctor prescribe antibiotics when we may not have really needed them.
Lethally resistant bacteria now resides in every hospital and nursing home in the world. Every year in the U.S., 2 million patients contract infections, bacterial, viral and otherwise. 90,000 people die and of those 90,000, many had drug-resistant bacterial infections and mostly S. aureus. The CDC has estimated that 40,000 Americans die each year from MRSA infections. The numbers are likely much higher as death certificates might read, died of cancer, when the patient actually died from an infection right after surgery. More people die in the U.S. from infections than the combined homocide and vehicular crash death rates. This is astonishing.
Under "Advocacy Work", I detail what I have done in Illinois to change and make state health officials, legislators and consumer groups aware of this endemic disease that has been swept under the carpet and hidden in the closet for too long. There are many doctors and nurses who want to change how health care facilities operate and I commend them for their efforts also. I feel I survived my infection to be able to advocate for change, support other survivors and their families and to promote research for this deadly disease. Below is my story and I hope other survivors will share their experiences under "Survivor's Stories".
MY STORY
I am a woman in her 40's from Chicago who had been an international travel executive for over 20 years and had my own consulting company. I was an avid competitive "A" level tennis player and also a world traveler who loved intrepid and adventure travel.
In November, 2000, I slipped on ice and broke my left ankle(both bones). I went to the closest hospital and I was told that I would need surgery to repair my ankle (plate and screws inserted) and I was admitted. I was very upset as I had never been seriously injured or sick before. I was in excruciating pain. The next day a friend thought I should transfer downtown (Chicago) to a large hospital and so I did. The orthopedist looked at my ankle and said because of blistering I would not be able to have surgery for 2 weeks, which was very upsetting as I just wanted my ankle fixed. I went home and the next two weeks were painful and hard learning to walk on crutches. Luckily I had a network of friends who took care of me, doing errands, etc., so I could stay off my leg. As a self-employed person everything came to a standstill.
HOSPITALIZATION
On Dec, 4, 2000, early in the morning I had my surgery (ORIF) and once they were in they saw that I needed a bone graft, but just repaired it with a plate and closed it up as they were not prepared to do that. I was in the hospital for 2 days, never letting go of my morphine pump and the pain was unbelievable. Finally they got me up on crutches and I went home with a splint on my leg. Later in the afternoon I started feeling nauseous and the intensity of pain was increasing. I started to cry and could not stop. I paged my orthopedist and he told me either I had an infection or my splint was too tight and to go to the ER right away. I didn't bring anything with me as I thought I would be back home real soon. Wrong! I went to the ER and was seen right away by a orthopedic resident who examined my leg and did a culture. He took off the splint and I was afraid to look, but when I did, I was not prepared for that awful sight. My ankle was oozing large amounts of pus and was black and it was a truly hideous sight, swollen and red. He squeezed my foot to get out as much drainage as possible (pus) and I was crying and sobbing very loudly. I was very embarrassed by my crying, but the pain was unbearable. They finally gave me a demerol shot and put me on a gurney to wait for a room. I still was very optimistic that I would be home with antibiotics in a few days. I had a surgery in the morning to clean and washout my wounds, but I do not remember that surgery. I started to slip in and out of consciousness for the next few days and they were a blur, the morphine and the fever. No one could come and see me as Chicago was having terrible snowstorms with heavy accumulation almost every day. I felt very alone and afraid. I was having nightmares that the doctor would amputate my leg without my consent and tried to stay awake.
After another surgery with a 102 temp I knew I was feeling worse. That night my temp reached 104 and I lapsed into unconsciousness and experienced a near death experience. I knew at some level I was dying and I was angry for going like this, I wasn't ready. The nurses paged my surgeon and I was put on the antibiotic, vancomycin. I woke late that morning and was truly surprised to be alive. I still had a high fever and felt very sick. An (ID)infectious disease consult was called
and I had to have many more surgeries to save my leg. I was not told what was happening to me. I was in the hospital almost a month and had to have several more surgeries to save my leg.
AT HOME
After several weeks my wound stabilized and I was able to go home on oral antibiotics. The pain on some days was unbearable and I was very weak. I developed complications from the antibiotics and ended up in the ER and was switched to other oral antibiotics that I stayed on for 5 months. These antibiotics were very strong and made be nauseous, fatigued and dizzy, but I had to stay on them or go to a long term health care facility and take antibiotics interveniously. I had two more surgeries to wash out my wound and a muscle and skin graft was decided against as a plastic surgeon thought my leg might heal by itself and it did over the course of several months.
ANOTHER SURGERY
Exactly a year after the first surgery I had the hardware taken out because my ID doctors thought there was bacteria under the plate. I did not get another infection and was laid up again for 3 months. So far, I have not had a skin or tissue infection.
MUTATING
I have always been prone to ear and sinus infections and 2 years after my first surgery, I had a sinus and ear infection that antibiotics would not clear up, augmentin usually worked. I did 3 courses of that and my GP then tried bactrim and that did not work. I was confined to bed and was really frustrated to be so sick for so long. I went to my ear, noses and throat specialist desperate to be healed and I asked him to do a culture. He put me on other antibiotics and they did not work, I had become resistant to levaquin. It now had been over 3 months that I was sick. Finally he gave me augmentin XR and that cleared it up. I talked with an ER doctor friend about the theory that the MRSA bacteria I had was sharing it's DNA with the other bacteria causing it to be antibiotic resistant. She said it was only a theory, but now this has been proven. Many GP's and even specialists do not know this, so it is important that if you have MRSA and a prolonged infection that is not skin or tissue that you go back to your ID doctor.
My leg (ankle) joint is destroyed and I need an ankle joint replacement, but I am waiting for that to be perfected as I know that will be another painful surgery and I will be laid up. Otherwise I am health and live an active life as possible and I take good care of myself with nutrition,exercise and lots of sleep.
