If you think you have an infection, don't wait: GO SEE A DOCTOR NOW! I am not a doctor nor am I an expert. But, I am a survivor. My site contains a lot of info, but is just one stop on a long road of learning. It is here to tell my story and to reach out to others. I was hospitalized on 02/22/2004. I was in end stage multiple organ failure when taken into the operating room for the first of several surgeries. This all happened because of a rapid spreading infection called Necrotizing Fasciitis (NF), better known in the media as "Flesh Eating Bacteria." Surgeons scooped out my entire right armpit and removed part of my right breast, almost all of my upper arm and most of my inner forearm. They took skin, fat, fascia, muscle and a lymph node. Luckily no bone was lost, so I got to keep my arm (such as it is). I was given a 4% chance of survival when taken back to the ICU and remained in the hospital for six weeks. I have a lot of scars hindering my range of motion. The massive loss of tricep and shoulder muscle has caused severe disfigurement. The lymph node removal has given me secondary Stage 1 Lymphedema (LE). I felt very alone before I finally got home and got back online. I read a lot of folk's NF survival stories, then after posting a short version of my story on nnff.org, I decided to create this site so I could expand my story and report my ongoing progress. And, more importantly, to lend an ear to others. Sadly, as much as I'd like everyone to be aware of deadly bacterial infections and how to protect themselves against them, the truth is, most people find this site AFTER they have already gone through an ordeal of their own. Since my illness I have read every book and website I could find on NF. Education is the key, go to the links I offer, use your search engine, go to the library and consult with as many medical professionals as you can.
WHAT CAUSED MY ILLNESS?
In addition to having the "superbug" MRSA, my doctors said I had three types of NF:
1. Type I, or polymicrobial NF (Usually mistaken for simple cellulitis)
The lymph node removed from my armpit was completely full of it!
2. Type II, or group A streptococcal NF or the so-called flesh-eating bacteria
When the disease spreads along the layer of tissue that surrounds muscle (the fascia).
3. Type III NF, or clostridial myonecrosis, aka gas gangrene
This caused my muscle infection (it is called necrotizing myositis).
I was exposed to all of this because I was my elderly father's in-home health care provider. Towards the end of his life, Dad had to be hospitalized numerous times and his HMO kept releasing him too early with hospital-acquired infection after hospital-acquired infection (HAI). These infections included Methicillin-resistant Staphylococcus aureus (MRSA), Clostridium difficile (C. Diff) and Vancomycin-Resistant Enterococcus (VRE). Never once did his doctors, nurses or caseworker inform me of just how infectious he really was nor warn me that everyone who came in contact with him was at risk. Because of this, I nearly died. My sister-in-law took care of Dad for me during my hospital stay and she also contracted MRSA, as did Nora, my business partner, who rents a room in my home. Nora almost had to have a toe amputated. I really want to get the word out, to folks who are caring for their elderly parents, be careful! Make sure you wash your hands often and if you know your loved one has an infection, take steps to protect yourself and others. Staph and MRSA is a growing threat to everyone, not just the sick or elderly, and has migrated out of hospitals (HA-MRSA) and into the community at large (CA-MRSA). MRSA is now responsible for more deaths each year than AIDS. Please visit Stop MRSA Now for more information.
WHAT AM I UP TO NOW?
Nowadays, I spend a great deal of time spreading the word about prevention, not only on this website, but also at Facebook. Feel free to send a friend request. Mention MRSA or NF, so I'll know how you know me! I've met over three dozen other survivors on MySpace and Facebook has several support groups. I'm on Facebook several times a day. I also sell toys and other items on eBay. Of all the sites I maintain, this NF site is probably the most difficult one for me to work on. It is many things to me: a labor of love, a place to vent, a beacon of hope and a source of frustration. It has healed and injured me. I left myself wide open and have been harrassed by some hurtful people. My photographs have become the fodder for immature jokes on some ugly websites. Know-it-all types have written me and claimed I am "uninformed" or "misinforming people" because I haven't regurgitated every fact or theory in the world onto my pages. So, if you think you somehow know more about my condition than I do or in any way think that NF is a joke, please leave and visit this site instead!
THANK YOU FOR VISITING
I'd like to thank all the people who have told me I have been of help to them, especially Janet, Pam, Nicole, Karlene and Beverley. Special thanks go to my "warrior sister," Alicia Cole, my friend, fellow NF survivor and founder of Patient Safety ASAP. It is because of these people that I have the strength I need to continue "my mission" and keep this site online. A small sampling of the stacks of email I have received over the years has been added to my site. I hope you will take the time to check out the Letters Page, especially if you think I am "hurting people with my website." To everyone who has written, survivors, students, etc. I wish you all health and happiness. I'd also like to thank everyone who has allowed me to publish their stories on my site, your willingness to share your details is courageous and really helps to drive home the point that NF can happen to anyone, at anytime.
View my page & blog
Patient Safety ASAP
PS. I have posted graphic photographs from my skin graft surgery. Do not visit the photo pages if you are easily offended. If you are a student, I hope that you will find my story, a small, but helpful part of your ongoing research. A lot of students have emailed me to ask permission to use my story and pics in their school projects. Go ahead and do so, there's no need to ask.
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