Frequently asked questions have been prepared by Jeanine Thomas, a MRSA survivor and founder of MRSA Survivors Network. Hopefully this will answer most questions for those studying about this disease.
How did I find out that I had MRSA and what was my reaction?
I did not find out that I had a MRSA infection and osteomyelitis (bone marrow infection) till after I was released from the hospital (one month). I asked my infectious disease resident and my attending orthopedic surgeon about 10 days after I had been in the hospital
(6th nite) and regained consciousness to tell me everything about what was going on with me. I felt that I could deal with it then. I knew it had to be serious as I still was having surgeries ( I & D's) to save my leg and still felt very sick. I left the hospital after almost a month being hospitalized and only knew I had a staph infection. It was not till many weeks later when I had complications and had to go to the ER that I pieced together what my condition was. It was then that I was feeling well enough to go on the internet and look up MRSA at medical university libraries, CDC web site, etc. Only one in four doctors tell their patients that they have MRSA from a hospital. I was very scared, depressed and anxious when I knew that what I had was MRSA because I knew it would never entirely leave my body.
How did this effect me psychologically?
I was very upset that my doctors did not tell me I had MRSA. I think my ID (infectious disease) doctors thought I knew and it was the responsibility of my primary doctor(orthopedic surgeon) to tell me. The RN's on my floor thought I was told and commented that they thought I was taking it well. This was one of the most damaging psycholigical effects to me and I felt that the "sacred trust" between patient and doctor was broken and my patient's rights violated. Later, I asked my surgeon during a clinic visit why he did not tell me and he would not answer me. This disease is hidden from many patients and a "Code of Silence" by the hospital and doctors about this disease is quite common. I was one of the lucky ones who crossed over and crossed back and survived. I had to have a total of 8 surgeries and 7 of those were by spinal and I was awake. This caused me to have post traumatic stress and also 6 months later I remembered that I had almost died in the middle of the nite because I was on the wrong antibiotic. I had suppressed this memory because I could not deal with it while I was home trying to heal physically. I was frustrated in not being able to discuss my condition with other survivors as those who I knew had had it, did not make it. This is a lonely disease. I did feel very lucky to be alive and also to still have my leg.
What were the physical effects?
I had a reaction to the oral antibiotics that I was on after 3 weeks home from the hospital, but was able to switch to other antibiotics. Because I had 2 broken bones in my leg I had to walk with crutches for many months and I was very weak from the infection. I had a large amount of skin and muscle surgically removed from my leg because of necrotizing tissue and had a large hole in my ankle. A window was cut in my cast and my dressings were changed twice a day for many weeks and then once a day. I hated looking at my leg, but was glad it was granulating in and would not need a muscle and skin graft. It just seemed like it took so long and my leg was extremely painful if I did not have it elevated and at nite I had horrible bone pain. A year later I had the hardware taken out and was laid up again another 3 months. I now have 2 large scars on both sides of my leg, which can not be repaired by plastic surgery as they are over the joint. My leg now is destabilizing and I know I will need an ankle joint replacement when they perfect that. Every surgery though, is a risk of another bone or tissue infection happening. I keep an ace or stretchy bandage on it if I have to walk a little and can not put much weight on it. I do walk with a cane in the morning as the joint is stiff due to the large amount of scar tissue.
What kind of support did I receive?
I am blessed to have great friends and family members who helped me a great deal as I could not do much. It was hard for me to be up more than a few minutes in the beginning and even later I was very fatiqued and many times nauseous from the antibiotics. I could move from the bed to the couch and that was about it. It was a very slow recovery. I had to have my groceries bought, laundry and trash taken out. Because I had always been an athlete I exercised my legs and arms and tried to stay strong and do as much as I could for myself. It was hard to let others do things for me and it was a learning experience for me.
The professionals who helped me the most were my two ID nurse practitioners, they were WONDERFUL! They understood the pscychological aspects of a disease and knew I was struggling at times and went out of their way to support me. They gave me their pager numbers and I could call them at any time. I switched ID doctors and he was wonderful also, very open and communicated with me about my disease. I found that many surgeons have poor communication skills and this is hard for a patient. But I felt very supportive from my ID team. I don't know what I would have done without them.
Are you over the disease?
For me, no, I have a CA-MRSA (community-acquired) strain that did not leave my body and is mutating. My MRSA strain is sharing it's DNA with other bacteria in my body and making that bacteria antibiotic resistant also. I was never told that this could happen. I have had several infections ( ear and sinus) over the past few years that the normal antibiotics would not treat and I went to my GP and ear,nose and throat speicalists. After many courses and series of antibiotics, I finally found one that worked. It is very dangerous to have infections near the brain as it could spread to the brain. Many GP's do not know how to treat MRSA ( they knew I had it) and this is one reason also I started my organization and working with state health officals to get the word out. It is stressful for me when I get an infection, because I don't know if or what antibiotics will work each time. Luckily, I have not had a reoccurring tissue and bone infection.
Has this experience changed my perspective on life?
Most definitely! A near death experience and long illness can not help but change you. I am much stronger that I thought I could ever be and I know I can withstand an enormous amount of pain. I just hope I never have to again. This experience has made me want to get the word out about MRSA and change the way hospitals and doctors communicate with their patients. This disease needs to come out of the closet and out from under the rug. It needs to be dealt with openly and honestly for the good of the patient and the community. Hospitals need to take more responsibility and be accountable for their lapses of infection control. My advocacy work is targeted to keep the public, state and federal officals and those with this disease more informed and to advocate for change. If I can help prevent one other person from having to go through what I have, then I have accomplished something. Every day is a gift and one person can make a difference in the world.
Prognosis and what changes in lifestyle?
Many strains of MRSA never leave the persons body and infections can reoccur at any time. This disease is incurable, but many people are colonized and never will get sick. Doctors will tell survivors to try and live a normal life, but I think you do have to change. I require more sleep and can not get run down because that is when an infection will happen for me. I take vitamins, try and eat as many fresh fruits and vegetables ( many of them organic) and also exercise regularly ( cardio and weight lifting). I also take a daily garlic(oderless) supplement that may help in fighting MRSA and infections. I try to keep myself out of stressful situations and people who stress me because that can effect my immune system. A postive attitude is a must, thinking good thoughts. Helping others is a great form of therapy for me.
