MRSA patients, in their own words

'I am damned for the rest of my life.'

The following are personally submitted accounts to the MRSA Survivors Network (http://www.mrsasurvivors.org) Though edited slightly for spelling and grammar, they are left in the words of the patients.

Leanne

My daughter was born in 2005 by C-section. A week later I noticed a huge white pimple on her neck. We started to see redness and pimples on other parts of her body and she did not have a temp. She went for her 2 week check-up and she was admitted to the hospital right away and put into the neonatal intensive care unit. She was hooked up to IV antibiotics and diagnosed with MRSA and in the hospital for 9 days. A few days later I was admitted to the hospital with a golf-sized abscess in my right breast and they believe I got MRSA from breast feeding. I had IV antibiotics. I was released after 9 days and continued to take oral antibiotics. I worry every time my daughter scrapes her knee or gets a bug bite that she might get another MRSA infection. I don't think that the feeling will ever go away.

Eileen — RN

I just read about your efforts to have hospitals test for MRSA and I believe that you are fighting for something that should have been instituted long ago. My daughter was 28 when she contracted MRSA and was misdiagnosed several times before she received the correct treatment. She is lucky to have survived after 3 different hospitals and 4 operations. She has permanent damage to her foot and ankle. They were going to amputate her foot, but we were able to find the right doctor who treated her effectively. I am a registered nurse and work in a hospital, where we are constantly being exposed to MRSA, VRE, C-diff, etc. I'm sure new strains of bugs will continue to come. You are right — hand washing alone won't stop the spread of this infection.

Cheryl

I got MRSA after a torn rotator cuff surgery on my left shoulder. Doctors ignored all my symptoms and I finally went to the hospital and was admitted and nearly died. I was 11 days in the hospital. Came home for 3 days then back in for 8 more days. Went home and two months later huge bumps appeared on my left shoulder and had 5 more surgeries and a 2-week stay in the hospital, 2 picc lines and very expensive antibiotics for 8 months. The past 7 months I have been infection free. I sleep more now than I ever have.

Roni — 53 years old

I was diagnosed with MRSA in 2005. I had a bad case of pneumonia that ended up leaving me a paraplegic. Since then I have been on IV vancomycin at home twice and in the hospital once and had pneumonia again in March of 2008. I had surgery Aug. 22 for a pressure sore on my back side and am on IV vanco. It is very scary, as you never know when it will hit you again or if my family is going to get it. I've learned more about MRSA because of you than from my doctors and hospital. I have developed also another condition that I will have for the rest of my life. It is called bullous pemphigoid. I develop blisters all over my body and they are very painful. It is a very rare disease and I am on prednisone which prevents the healing of wounds and can limit my ability to fight off infections. I feel that no matter which way I turn, I am damned for the rest of my life.