The NNFF guestbook is the heart of our foundation -- so many people have found kinship and support in each other! Please spend some time reading through the entries made throughout the past three years (click icon on right). Talk about your experience! Keep in mind that if you have an urgent question, you should email Donna or Jackie as we do not review the guestbook on a daily basis!
|In June 2004 I somehow came down with an infection of Strep|
G,Bacteria in my blood and the hospital operated on me,
draining fluid from my knee and removing dead skin from my arms. I was in the hospital for 4 months and I was able to recover and now I manage daily activities,but the infection has left me with rhumitiod arthritis in my hands and wrist.
|I spent over three months in the hospital battling for my life, and the next year and a half waiting for those physical wounds to heal. I was lucky that all my scars are well hidden beneath my everyday clothing. That was back in 2000. The psychological wounds were slower to heal. I still awake in tears with the reoccuring nightmares of my dressing changes. However, I will NEVER get rid of the Intractable Pain I am left with for the rest of my life! I was blessed to find a physician who monitors my pain issues closely, but isn't afraid to treat my pain issues with dose appropriate opiates.|
|I spent over three months in the hospital battling for my life, and the next year and a half waiting for those physical wounds to heal. I was lucky that all my scars are well hidden beneath my everyday clothing. That was back in 2000. The psychological wounds were slower to heal. I still awake in tears with the reoccuring nightmares of my dressing changes. However, I will NEVER get rid of the Intractable Pain I am left with for the rest of my life! I was blessed to find a physician who monitors my pian issues closely, but isn't afraid to treat my pain issues with dose appropriate opiates.|
|I was a pediatric nurse at a level one trauma center when my world came tumbling down. My daughter, who was 7 at the time in 2004, awoke one morning with a swollen jaw. Of course, being a nurse, I feared the worst. She was vomiting, had fever, it must be cellulitis. WRONG! A speedy trip to the pediatrician in tears proved to be the first of events that would change our lives. Her white blood cell count was 49,000 at the doctors office. She was dizzy, and kept saying mommy I feel real bad, just real real bad. An admission to the pediatric ward at Palmetto Health Richland followed. Specialist were consulted and decided to go ahead and opperate. Thank goodness, the doctors there didn't take chances and told me up they thought it was NF up front and she would not live untill morning if they were right about the diagnosis and did not opperate. Kind of scary to send your little girl for surgery that may take half of her face, but to lose her would've been worse. The docs were right. Because of there quick actions, my duaghter has another chance at life now. She was intubated for a few days, spent 28 treatments in the hyperbaric tank, was in the hospital for a month, on home iv's for anther month and had a wound to her neck wrapping around her jaw line for 3 months until it closed. I was an experienced pediatric nurse and had never see a patient get this. I was scared about cellulitis, which would have bee a walk in the park compared to this, and had no idea an infection like this could happen to a healthy girl. She is now in 3rd grade and has forgotten about the ordeal for the most part. She never talks about it anymore, but I will never forget how it felt, to be helpless in fighting this. Keep your head up to all of you dealing with this, my heart goes out to you, stay strong because miracles do happen and recovery is possible. Pray, Pray, Pray.|
|My daughter is a 2004 survivor of group a strep nff to the left face. I still sit down to this day to read the stories to remind myself how precious she is to me. It is still like yesterday when she was rushed to that surgery with doctors telling me she may not live till morning. Keep your head up, to all the families dealing with this disease. Pray, Pray, Pray. Sometimes, thats all you can do. My daughter pulled through it after 28 treatments in the hyperbaric chamber and a month in the hospital. In the beginning, I was given little hope, but my amazing little girl, is in 3rd grade today with only a scar left to her neck from the wound that was left open for 3 months to heal. I think she has forgotten it is there because it wraps around her jaw line. I never would have thought the ending would be so good. Just know, no matter what anyone says, don't give up hope, because miracles do happen and this infection can be stopped.|
|I am a July 2, 2002 ,NF survivor thanks to an in house surgeon who was able to diagnose my condition and operate immediately. My case was unsual and difficult to diagnose in the beginning stages as it (the surgeon decided later) came from the inside out-a bruised muscle. I had a red spot on my upper arm about the size of a silver dollar, flu symptoms, was tested at an ER and sent home with antibiotics and pain pills (they thought it was shingles). The next morning, my symptoms became extreme, we called 911 to take me to the ER. The ER docs were puzzled, so called in the in house surgeon who was able to diagnose me right away as he had done his internship at a county hospital and was familiar it. I lost alot of tissue on my right arm, side and hip. My wounds were very deep. I was put on a wound vac at the hospital so was able to go home after 15 days. We set up a hospital bed in our living room. Family and friends brough us meals and much TLC. I had home health wound care 3 times a week until the end of August. September 13, I had skin grafts and on December 31st the last bandage came off. With physical therapy, I have complete range of motion with my right arm. The scars are ugly, but I thank God for his divine intervention in providing the medical help in my time of need. My family and friends were a wonderful support system. My home health nurse became my friend. Life is precious and I enjoy it to the fullest. Even am able to wear a bathing suit and not be self concious about the scars on my right arm. Amazingly, if people notice there are few questions.|
|my mom was diagnosed with NF 2 weeks ago. She isn't stable enough to go into her 4th surgery right now, but she is fighting as hard as she can. Please keep her in your prayers.|
|please pray for my mom.she has nf and has had 3 surgeries in 7 days. she is in cCu on vent, meds for bp and dialysis. this started 8 days ago...i will keep you posted.pray|
|An update on my brother Brian Boutte who first entered the hospital very near death July 2005. He is home and has been since 10-27-2005. He is doing very well. He does have a few more operation to go through and he says thatís ok I here with my family. Brian appeared on KOMO 4 a Seattle Washington News station. When he found out about a little boy that was miss diagnosed and has been fighting for his life. Jake is his name he is at Childrenís Hospital in Seattle Washington. Brian knew he needed to get his story out there, to let people know this is a very real disease and everyone needs to know about it and what to look for. That we need to not be just satisfied with the diagnoses if you know in your heart that there is something very wrong going on with your body. As Brian has put it "this is the biggest sucker punch he has ever encountered. An older woman has died in our area because of NF and now Brian is working on taking his story Nation Wide. Something must be done. As I know more about Brian's Nation Wide fight to make others aware of this vicious disease|
|Jennifer Ray, I am so glad your daughter was a fighter and that you had a doctor that knew what he was doing. A doctor that cared and actually knew NF when he saw it is pretty rare from what I can tell. My story is on the survivor site if you are interested in reading. I wanted to tell you about the NF group they have through yahoo. You can sign up here at this NF site on the home page. It might be nice for you to talk to others that know what your daughter and her family went through. I am so glad she is doing GREAT now. You are very fortunate......GOD Bless and you are welcome to message me if you would like.............Sharm|
|Julie, I am so very sorry about your brother. You can join the NF group. It is a group through yahoo where NF survivors and Loved ones of thos with NF. It might help you to talk to people who know how you are feeling. GOD BLESS.....You are welcome to contact me as well.|
|My mom was misdiagnosed she was having flu-like symptoms and the doctor said it was just a virus & for her to rest at home for two weeks. Over those two weeks she wasn't getting better at all. On Thanksgiving (Nov, 25, 2005) my mom was on the floor weak, disoriented, and extremley dehyrdrated and could barely speak. I called 911 and the paramedics took her to the ER she also had no blood pressure. When we got to ther ER in the ambulance they took her in and the doctor thought it was only Pneumonia and that she would be out in 3-4 days. It was about midnight and they wanted me to go sleep so i staye dat a friends thinking it wasnt very serious. Wrong. During that night her heart stopped and they had to ressucitate her by shocking her with an AED machine thing. Her respiratory was failing so they put her on a ventilator (life support). The next day I called on the phone to "check on her status" and was shocked to hear that her heart had stopped during the night and they got her back, and that she was on life support and that she was critically ill and they weren't sure if she was gonna survive. I went to see her immeditaly and she was completely in coma and looked very sick. Her kidneys had also failed so they put her on Continous Dialysis. They didn't think she would make it. But they didn't give up. They did many leg debrivements in her right leg since thats where the infection began. They didn't even no if she would make it through the surgeries but it was her only chance. well she made it through all the surgeries. as time went by she woke up and her kidneys began working and she was even writing down things and acting more normal!!! it was very exciting and then we ALL thought she was going to make it. Wrong again. :( She got colitis (her colon had ulcers really badly) so she had a surgery to remove her colon, she had a tracheotomy to put the breathing ventilator in her trachea, and more leg surgeries and daily dressing changes. Then the NF went away but it had damaged her body SO badly on the inside and some of the outside. When the NF was gone though it was great. But the happiness only lasted a week. Then she got VRE (Vancomycin Resistant Enterococci) a type of infection, Sepsis/Septic Shock from the NF, Strep A Toxic Shock Syndrome which are life threatning infections. She had good days and bad. She had days where she bled and they stopped the bleeding with blood products and giving her blood transfusions. After her colon was removed she had a colonstomy bag on her side of her stomache. It looked ok the first couple days but then it began bleeding every day. Eventually because of her infections her blood wouldn't clot anymore so she couldn't stop bleeding. They gave her blood products but that didn't work anymore because of her non- clotting. She was bleeding inside her stomache and surgery would only cause more bleeding. Her kidneys completley shutdown. The ventilator was the only thing keeping her alive. The doctors said their was a 0% chance of her survival and that she wasn't going to make it that the medications weren't working for her and blood products weren't helping. Soon after they said she was brain dead. They sedated her so that she wouldn't have any pain during her passing. She was in coma. My grandma (her mom) told them to do a DNR ( Do Not Ressitate ) for my mom because they said it wouldn't work and if it did 10 mins. at the most but then it would just stop again and again and that it would cause her extreme pain. On February 19, 2006 my mom's heart stopped twice at about 1 AM and 2:45 AM but it restarted itself. Her blood pressure was 30/29 ! Not even enough to sustain life. At about 10 AM my grandma signed papers to let them disconnect the Ventilator since their wasn't any hope. The doctor also agreed that was the best thing to do. My mom passed away about 15 seconds after the ventilator was disconnected. ='( It was the saddest moment of my life. The only CLOSE family I had left were my brother and Grandma ( my mom's mom). My grandma actually broke her hip the night before my mom was rushed to the ER. She had been in the hospital for minor things. Well about 2 weeks after my mom passed away my grandma had a stroke at the nursing home she was at. They called 911 and she was rushed to the ER. It was very serious her brain was bleeding. We went to be with her in the ER. She couldn't talk normally or understand things due to the stroke and brain bleeding. It took hours to get her an ICU bed but finally she got one. They kept her in the ER until they got an ICU bed for her. They took her to brain surgery and she made it through that. She was put in the ICU. They did a CT scan and two areas were fixed but one was bleeding again so they did a second brain surgery and she made it through that too. They didn't know if she would wake up though... that was the main concern. But a few days later she woke up!. She was also on a ventilator. A few more days later they took the ventilator out because she was breathing good! Right after they removed the vent. she was talking, sitting up, acting normal! It was a great moment. The doctors were sure she would make it. They were even getting ready to transfer her to a diffrent floor less critical. A few days later though she unexpectedly took a turn for the worse and was having difficulty breathing. They were going to put her back on the Ventilator. Her heart was also beating very irregular. But about only 10 Minutes later she passed away. They tried to ressusitate her but it didn't work. She was 88 years old and a wonderful loving gramma. And my mom was a Kind, Awesome, Beautiful Mom. They will be missed very much. I lost the two closest people to me in 4 weeks. My brother and I stayed many nights overnight with my mom at her bedside talking to her and telling her we loved her and that we'd see her again in heaven and that we would be alright and that God would protect and take care of us and her. They said she could still hear us because hearing is the last thing that goes. Well I hope that everyone who has lost someone to NF will stay strong with the Lord and know that their not alone and I know exactly how you feel. Anyone who is a survivor of NF i am happy for you and your very lucky and blessed by God. I miss my mom alot but i know i will get to see her again someday in heaven. God Bless all of you. You can email me at: RoxyKutie12@yahoo.com|
|I am a 19 yr old hospital coreman in the USN and have dedicated myself to becoming a virologist/microbiologist...i've been facinated with viruses and bacteria for years..and will be researching ways to destroy them.. NF is frequently misdiagnosed and i want to stop this...i first learned about this deadly condition thanks to a books called "new killer diseases how the alarming evolution of germs threatens us all" by elinor levy and mark fischetti...the case of jeanie brown a woman from canton, NC died of NF..this alarmed me greatly..i recommend the book personally..it talks about a lot of major diseases. Hopefuly i will never have to expereince NF, but i want to help those who attain it and other deadly infections and or viruses like ebola..even though rare..is a very fatal virus....studies i have done show NF cases to eb increasing over the years..many linked with surgeries..I can tell you all now this can be prevented with proper sterile techniques and medical asepsis..I as a health care provider would be happy to answer and questions on how to prevent from contracting illnesses and what signs to look for in other infections...if anyone believes they may have had an incident where they feel malpractice was a issue..i can say whether or not it was..i've worked in two labs and currently will be working at Naval hospital corpus christie, TX . God bless everyone..and lets keep fighting against these germs before they continue to take our friends and families...|
|I lost my mother to NF. She was undergoing chemotherapy for leukemia at the time she was striken. Due to her weakened immune system, there was nothing the doctors could do, but put her in a drug induced comma so she would feel no pain. My hats off to all of you survivors. I watched the pain my mother went through and don't know how all of you endured this. You are brave beyond brave! God Bless each and every one of you!|
|This is the best site for NF survivors and the families who have suffered a loss to this awful disease. Keep up all the good work in promoting this illness and making more people aware of just how dangerous it can be. Thanks. From a survivor.|
|My sister died of NF on Jan 17, 2006. Just starting to be able to deal. She was a magnificent, accomplished Master Level Nursing Administrator who spent her whole life helping others. Ironic, she should succumb to this killer. She died 5 days post diagnosis at Cleveland Clinic in Ft. Lauderdale, Fl. I have so many questions- she was 56 years old.|
Thank you for allowing me to browse through this website.
|Hi, I am a survivior of NF 2006. My sister gave me a copy of the founders book "Surviving the Flesheating Bacteria" after I got home, which has really helped to understand what happened to me. I know they say there is no light cases of this horrible disease but I feel that my experience was. I also think that some very important and helpful information can be found in my case, not in preventing it but to surviving it with limbs intact, and to surviving with ones life.Let me tell my story |
In the mid 1970's I was diagnosed with a rare disease called Bechets Disease, I was 14 yrs old. this disease is a blood disorder and an over active immune system. My body always thought it needed to fight off everything, causing constant rashes and what not. I was always sick as a child. As I became an adult I lived in denial of having anything wrong with me(this is because as a young adult and teen if I went to a new DR., they would refuse to treat me or take me as a patient)so I stoppped telling anyone about it.
A year before contacting NF, I was really sick. My R elbow always hurting, I figured it was just arthritis, I've always had and I became incapable of doing the simplest of tasks. In the month before NF, my 5yr old son came down with strepp thoat(an old nemesis of mine I used to get strepp all the time, every month as a child, and then as a teen I only got scarlettina a form of strepp once in a while) Two weeks before NF I started running high fevers, which really isn't odd for me, I carried on with my life as best I could, always just barely getting things done. This being right before Christmas 2005. A few days before Christmas I bumped my elbow(a very light bump). Christmas Eve I started coming down with what I thought was the Flu. I don't really remember much of December or Christmas for that matter. I was really sick I could'nt eat the dinner my sweet honey cooked for X-mas and I was taking Advil by the handfuls and icing my arm and drinking ice water and gingerale, but mostly literally gallons of water. Dec. 26th 2005 I finally broke down and asked my partner John to take me to the Hospital. In the ER I could hardly stand and was put in a wheel chair. I told the check in desk "I bumped my arm and got the flu." I was rushed in to a room John and my son where with me. The Dr.s tried to drain my arm which by this time was 3 times it's normal size. well it wasn't water on the arm and they called in the orthipedic in the Hospital. Before he came to talk to meanurse came up to me and said" Thank god your white blood count is so high or you would be dead by now!" I was really out of it and and said"White blood count? Well Iguess I have to tell you then." She was looking confused at me and I told her about my Bechet's because it causes a high white blood count. She didn't know what it was but went to tell the Dr. I spent 2 weeks and 4 operations in the first hospital I was awake and aware of what was going on. Thanks to a very good Dr. Dr Klien I was diagnosed right away, he saved my life and my arm. I was told I was 6 hours away of it being fatal. And that it was suspected I had, had it for a very long time.I also feel that my Bechet's also saved my life, something in having this disease inabled me to fight this NF.
The Dr. tranfered me to a micosurgical clinic of renown capabilities 60 miles from home. Being so far from home was the hardest part for me. Little did I know my family had been I might lose my life and or my arm. I was septic by the time I went to second hospital and my body stopped making blood, I couldn't keep down food and did not have bowel movements.
I was in a bad way, having operations for debridement every day and every other day. I got to keep my arm with a scar from half way down my upper arm to 1 1/2" inches from my hand, 4" inches wide at the widest part over my elbow. The original Dr. took many pictures all the while asking me to look at them. I said " Not while I'm going through this, maybelater after it's all over. My dad has some and pics of thesite they took the skin from. My skingraft took 100% it was incrediable.
I feel that I really did have a light case and that my survival in part is due to my disease, bechet's. I think there is something to be learned in this medically for others in their survival.
Surviving NF is a very spiritual experience. But at the same time I'm going through the emotional stuff right now.
Thank You.....allowing me to tell my story
Another 5 surgeries and 2 weeks a total of 9 operations and almost a month in 2 Hospitals
|Thanks for the special work and information!|
|I saw the story on Discovery Health about your experience with NF. I am grateful to find a site that helps those of us who have suffered from NF. I lost my entire right inner thigh to NF. I didn't even know I had NF until after the surgery. I knew I had an infection, but the usrgery was suppose to be a 1 inch incision to drain the infection. THe next day I was taken to whirpool therapy and discovered that they had made a 15 in incision and that the flesh simply was hanging open. I could just see my bones inside!! THat was when I was finally told that when they went to drain the infection they found NF and they had to take almost 3lbs of flesh to save my life. With the infection in my inner thigh at the groin my danger of sepsis of NF was very high. It took 5 months of daily irrigation and packing of the wound to finally heal completely. I too am disfigured from teh NF surgery, but I am grateful to be alive. I have only recently gotten up the courage to wear a bathing suit. But I did it. Afterall what is important is that I am alive.|
Thank you for creating this site so that people like me have somewhere to turn.
Thank you, Thank you. Thank you.
|Hello. I just saw an episode of Mystery Diagnosis that featured one of the co-founders of this foundation. What I saw on that episode terrified me. I can't believe this is a real problem that affects real people. I've never been afflicted with NF, nor do I know anyone who has been affected with NF, but I'd love to talk to those with it who need someone to talk to in my area. |
|HI WELL I WAS WATCHING YOUR STORY ON THE DISCOVERY CHANEL ITS THE LADY WHO HUBSOND NAME IS RICK LOL.I WAS SUPRISE AT WHAT I SAW .BECASE I WILL BE HAVING BREAST REDUCTION SOON ON JUNE 15 OFJUNE AND AFTHER I SAW SOME OF THEASE PIC IM KINDA NERVISE.I HOPE AND PRAY THAT NOTHING LIKE THAT HAPPEN TO ME .AND IM SO SORRY THAT IT HAPPEND TO YOU I HOPE YOU FEAL A LOT BETTER KNOW WELL I JUST WNT TO LWT YOU KNOW THAT I WAS GOING TO HAVE THAT KIND OF SUGARY THANK YOU TYCISCA|
|My ex-husband died on March 24, 2006, in Jacksonville Alabama from this horrific disease. Like so many, he went from perfectly healthy to death in less than a week. He hadn't seen our children in sixteen years and was on his way to Alaska to reunite with them, which makes his death even harder to accept. Thank You for taking the time to educate people on a rather unfamiliar disease. The pain Allen Ayers suffered angers me. No one had a clue. If this saves even one life then our loved ones will not have died in vain. Thank You again. Lisa Ayers|
|OMG! I must be like the 3rd or 4th Jackie. My father just survived NF. He has congestive heart failure, is diabetic, has a rare blood protein disease (was taking oral chemo drugs which includes steroids). His NF took hold like a brushfire and he was put under the knife in a matter of hours within arriving at the ER. His prognosis looked bleak. He not only survived, he didn't lose his limbs! I thank God and his orthopedic surgeon, but the surgeon said the PA in the ER was the one who diagnosed his NF immediately. My dad underwent major debridements and a skin graft. Although his legs look like Frankenstein's monster, he is still alive and kicking. Keep up the good work about educating people about this insidious killer. Knowledge is power!|
|My husband had NF in 2003, when he was 39. He still gets sick once a month; fevers, chills, no appetite, sleeps all the time. But he has not been to the hospital since 2005. Our daughters were 6 and 3 when their dad ALMOST died. |
We waited 9 days until GOD sent to right doctor to examine him. When this doctor arrived, they had to take my husband in for emergency surgery and there was no guarentee that he would live through the surgery.
I would be willing to email with anyone wanting to talk.
|I am a survivor of NF. In 2003 I had a hysterectomy and ended up with NF and gangrene of the abdomen. I still cry and have PTSD, but am very thankful to God I am alive today. Thanks so much for this site as I do not feel alone now. Will post my story later. Would like to talk with others who have contracted NF following a hysterectomy. My email is firstname.lastname@example.org.|
|My brother died of NF three months ago. It was a terrible and painful way to die. He had been beaten and went to the hospital three times. The second time he went to the hospital was because he was in such pain but all they did was prescribe pain medication. The third visit he was diagnosed with NF, but it was too late to save him the infection had spread too fast. Surgery was performed but had to be stopped because they were afraid of losing him; when they did resume surgery the next day the infection was too intense and the doctors said they couldn't help him. He also had other complications; diabetes mellitus. The hospital staff said it was the worst case of NF they had ever seen. This web site has helped me understand NF and how other people have coped with it. Thank you.|
|I have just survived NF, I had a c-section on Aug 17, I ended up back in the hospital within a week. I complained to my Dr about pain in my abs but he acted like I was being childish. I told him I was having chills followed by sweats, he said it was normal, I told him that the stuff coming out of the drain tube he sent me home with stunk, he said it was normal, my husband questioned him about a black spot that was at the connection of my two incisions, he said he wasn't concerned, then finally he did admit that I had an infection and sent me home with over 5,000 mgs of antibotics and told me to take 3 tub baths a day and stay in the water for at least 30 minutes each time. Then he proceeded to take out my staples and I screamed in pain, he said "its not like your in labor".2 days later my incision from my first C-section opened up and my husband didn't know what to do so he took me to the ER, the Dr was called and he came in and sent me to a bigger hospital. Within 30 minutes of arrival I was in the OR. I am currently healing, I had most of my abdomen removed during the course of 3 surgeries and 4 debridements done at the bedside. I had a wound vac on for 2 weeks, and responded to it well. I still have 8 inches to go in healing of the 16 I started with. I have a nurse who comes 2 times a week to check me and pack me, but my husband does it the rest of the time. I have to have surgery to reconstruct my abdomen, and one to repair a hurnea I now have due to a lack of muscles left. I wasn't able to carry my newborn for a while but now I can for short times. Life still isnt normal but its getting better. I feel so angry with the Dr. I don't know what to do with all the anger. I have gone to talk to an attorney, but haven't made any decisions yet. I would love to hear from anyone out there who has dealt with this horrible infection.|
|My best friend was diagnosed with flesh eating bacteria this morning. . First surgery within two hours of diagnosis and she is holding her own but not out of the woods yet. Renal failure. |
Any helpful information that anyone would like to share would be welcome. Especially questions that need to be asked (to doctors) that I wouldn't know to ask, or things they neglect to mention, how to keep her spirit up as she goes through this. Anything you think might be helpful would be so appreciated!!!
Please email, teresa Belardes at the following adress;
Thank you! I welcome any and all emails. Please put NNFF in the subject line so I know to open.
|My son was diagnosed with NF in Feb 1992 age 11. This began as a case of chicken pox.We had a period of about 4 days with a misdiagnosis, our son was transferred to a regional hosp. The began massive antibiotics and opperated within 10 hours We spent over 4 weeks in the hospital, two debridements and two skin graft surgeries. The area was on his chest and he was only hours away from losing all the muscle on his chest wall. He still bears a large scar, even after scar reduction surgery. Today he is healthy and not overly bothered by the scar. I still suffer post traumatic stress disorder.|
|My husband is has been in the hospital since Aug 5th. He was injured in a motorcycle accident then had a few different infections, finally contracting NF. He has large wounds around his lower stomach and backside. He has extensive wounds that require a trip to the OR in order to change the wound vacs. He is diabetic and has liver problems due to contacting Hep C about 15 years ago. |
I would like to talk to anyone who has dealt with NF and Diabetes and/or liver disease. He is still in the hospital, just hanging in there.
|My mother Donna McEroy, sixty years old, passed with NF on January 21, 2006. What a terrible way to pass. She was in excruciationg pain due to NF and being a bilateral amputee. Donna didn't deserve this and I do not wish this disease on anyone. What a horrific experience she and her family endured during this whole process. Mom suffered just as Jesus did so that we all could have a better life. Thank God it is over and now she can rest in peace. We are thankful for all the cherished memories and love she gave her family. We love you Mom! We know your dancing with Dad now. See ya in Heaven. Thank you Lord for sixty wonderful years with our Mother. Kimberly|
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|My brother is suffering from NF. This first became noticable after a simple operation. He has gone through 3 operations. It seems that they have removed most of it. I can say that he has lost about 35% of his flesh from the left side from his thigh to the groin to the the lower abdomen and back. We believe he first came to contact with this bacteria after the operation. He is a 25 year old young man who is fighting for his life. We ask that everyone who has had or seen NF pray for my brother to get well, you know how it is to deal with and can understand what our family is going throug. God Bless and Keep my Brother in your prayers. Anyone that has information on NF please feel free to emai me email@example.com. Thanks.|
|To all NF survivors and families ...|
When you read this message please take a moment to say a prayer for Jake Finkbonner. This beautiful little boy is fighting NF and is in ICU at Children's Hospital in Seattle Washington. NF has attacked his face and neck following a bump on his lip while playing basketball. He was initially misdiagnosed. NF attacked my face 2 1/2 years ago, I hope that I may be of emotion support to this family as they face the challenges ahead.
Make it a great day,
|hi! u r ccool! we have some commons interest ;)|
|My sister came across this site a few years ago, but this is the first time I have looked at it. Back in 1999 I had a bad infection and had a vary large debribment done on my left butt cheek and had to have a temporary colostomy and skin grafts, they thought it was NF which scared me but according to the Dr. it was gas gangrene. After 7 several surgeries I am total healed, with just a lot of scaring. P.S. I had dr. Pagnozzi, and yes he is "cute as a button", and a VERY good Dr.|
|Just an update to my recovery from NF. As of today (2-20-06), I am doing very well. The surgeon has been amazed at how well I am healing. I no longer have to have the home health nurse visit. My diabetis is under control and that has helped the healing process tremendously. I will keep that under control from now on!! And the Lord has blessed me in so many, many ways. I know that I could not have reached this level in my healing process without his hand in mine. I have been telling anyone and everyone that I come in contact with about my experience with NF and it amazes me how many people have never heard of this devastating disease. We definitely need more awareness and education about this. I am just so fortunate to have had the doctors and excellent care that I did. God Bless all who read this and for all of those who have had this, I will keep you in my prayers.|
|Greetings, at you good site, is much better than many, I wish you to make it even better|
|Very good site! I like it! Thanks!|
|My husband has been diagnosed and fighting to survice this horrific invasion at Vanderbilt Hospital. They have him in ICU in the burn unit. We are fortunate to have the brilliant Dr.'s and the attending nurses taking care of him.|
|this is a great website for my school project. everyone that helped make this site is great. If it is possible, I would like someone to e-mail me with some of the specifics. Thank you|
|I contracted NF in December 2005 in the L upper arm beginning at the elbow and extending past the shoulder. Luckily it was diagnosed early, but nonetheless I still had five debridement operations in a ten day period and have been left with two vertical scars from my elbow to my shoulder. I am told I was 48 hours from death and am extremely lucky to still have my arm. I have regained most of the pre-op strength in my arm but still need a little bit of physio to get all the movement back.|
One important point for people to be aware of is that externally does not have to be black to be life threatening. Outwardly all I had was massive swelling and pain.
|i am updating my e mail address in case any other survivors wish to contact me about my battle with nf i do have my story published on here and anyone is encouraged to read it or email me for support i lost family and friends to nf and will talk about it if asked|
|My mother is currently battling the effects of NF. She was diagnosed last Tuesday and has very little skin left on her right arm. She is still unconscious and finally has regained a stronger blood pressure. She is still suffering from kidney failure, but her lungs and heart appear strong. Your site has been very helpful so far. It is encouraging to see the success stories.|
|I recently had surgery on Jan.3, 2006 for NF. I had never even heard of the disease before. It entered my body thru a cyst that was located down in my left groin area. I am here by the grace of God today, because the surgeon said if they had had to wait another 2 hours to do surgery, there would have been nothing they could have done for me. I am now missing the left side of my vaginal area to the left leg, an area the size of a childs' small football, but I am healing from the inside out and will require some re-contructive sugery. But, the main thing is I am ALIVE! I praise God for that and the knowledge and expertise that he gave my doctors. God Bless everyone who reads this.|
|Far too little information is given to the general public as to the dangers of these infections. Had warnings been made on a regular basis, or signs posted in public recreational areas or even in sports-type magazines, there is a very good chance that I would not have suffered the life changes that I have experienced. I have thought more and more often about attempting to seek changes to this negect from governmental health and recreational authorities. Although, occurances are considered to be low in number, the effect on lives can be, and often is profound.|
|My prayers are with you all. I lost my Mother to NF almost 29 years ago. She died on september 2nd 1977, one day after having a C-section. My father was left to raise me 6yrs old, my brother 7yrs old and my newborn sister on his own. |
There weren't to many places to get info on NF in 1977.
|Today is Sunday Jan.29,2006, and my family just found out that my uncle has NF. When you hear "flesh eating bateria" it scares the hell out of you. I heard of stories about this thing but never thought it could happen to someone I love and know.|
I know that my uncle has a long way to go, please all i ask for is for you to keep my family in your prayers, i will keep everyone in mine.
Thanks for the website now I know what it is and that people do live after this living hell,.
|Hi. My name is Andrew and I am 16 years old. Last spring a good friend of mine from my church died of this horrible disease. It started with commen flu symptoms and resulted in NF. I had 2 other loved ones die that week. It was a hard week. But ever since he has left i have been trying to learn more about the disease. Thank you guys for putting this site together. It has helped me understand why this happened. |
I support this matter a lot and hope someday there might be a cure or a better understanding of the ways they can treat patients.
|Today marks year two that my brother Terry was taken from us because of this terrible infection. Not a day goes by that I don't think about him and keep all victims, survivors and their families in my thoughts and prayers. Through education we can become more powerful than this horrific bacteria. I miss my brother everyday and the pain in my family's heart will never go away.|
|I was shocked to find out a support network like this existed. It certainly is not recognized or recommended by the medical community I am currently working with, which is an incredible lapse.|
I am a survivor of Necrotizing Fasciitis, also from an emergency C-section (I noticed a fair number of C-section survivors on this site). My baby was born on December 31, 2003, in the high-risk unit at the Health Sciences Centre in Winnipeg. I am just now emotionally well enough to begin to really search for connections and answers. I spent much of the past two years feeling alone in having this postpartum complication - the surgeons and doctors I have been dealing with have kept reminding me that I am a heavy woman and that I had always been at a higher risk for infection. Certainly no one prepared me for the possibility of this!
I had debridement with 20 lbs of tissue removed from the left side of my abdomen, spent one month in the Women's Hospital at HSc (without my baby), and then had home care nurses coming in to my home to do wound care for two month after that. My mother had to move in to our home to care for our two children while my husband continued to work, and do the homemaker tasks I was unable to do. I have had treatment for depression, have been unable to return to my work as a Speech-Language Pathologist, and have physical complications including knee and back pain in my left leg - diagnosed by a chiropractor as related to my body's attempt to compensate for the uneven weight distribution of my abdomen as a result of the surgeries. I have put further plastic surgeries far in to the possible future.
My experience with NF was terrifying, exhausting, and traumatic. I can say, now - two years later, that I think I and my family have survived, but it took a terrible toil and I think was dismissed much to easily by the medical community as a "common" consequence of surgery.
I thank-you for this opportunity to network and I welcome any contacts and questions anyone may have. Talking about it helps me and I can now talk about it without crying. I would like to be part of a movement towards creating awareness of NF as a consequence of C-sections, and encourage the medical community to put NF survivors in touch with such a support network. Reading these survivor stories has given me much strength. I am glad for this forum. I will be posting my survivor story in the near future.
|In 1993, I moved from a NYC apartment in which I had lived for 20+ years to another a mile away and then went to my 50th high school reunion in Milwaukee. When I returned, I began working on an idea for a new business. |
Within several days, I became sick with what I believed was the flu. I slept most of the day and my left arm was swollen and ached heavily (it turned out to be a type of cellulitis) No matter how many blankets I piled on, I couldn't get warm and shook badly. I fell down several times (due to a combination of a mild case of hereditary Meniere's disease and my weakening system). When I called to cancel a six-month checkup appointment saying I felt too terrible to come in, my internist's nurse insisted that I go to the hospital for an evaluation. She told me to call 911 which I found ridiculous, as I live two blocks from New York Hospital. So, I delayed and delayed and she kept on calling me. Finally, I did as she said.
The doctors did not seem to know what was wrong with me. They began antibiotics (the wrong ones), IV fluids, etc. After four days of their treatment, I become worse. My left arm was excruciating, the other arm was beginning to ache and I was delirious -- my adult children said I was "loopy." Finally, the medical staff called in a renowned hand surgeon from the Hospital for Special Surgery, Dr. Edward Athanasian. The doctor told my children that he thought he knew what was wrong but couldn't wait two to three until the biopsy came back to begin treatment. So, I had the first of three surgeries on consecutive days. He had correctly guessed that I had necrotizing fasciitis. After nine days and still terribly weak, I returned home. After a month of home therapy and and rest, I began to feel stronger. In February 1994, I went with several of my children and grandchildren to China. My recovery has been full. The only after-effects I notice are a tingling and slight weakening of my left arm and aching sensations in both arms when I exercise. I was very lucky that my disease was caught early enough so that there was little damage to my system.
|I got NF from a fire-ant bite that became infected with a MRSA. It took less than 24 hours for me to start running a high fever, and about 48 hours for the inflammation to get so bad that I could not bear to touch the affected area. God bless my doctor and the staff at St. Joseph's Hospital Emergency Room, who initially thought I had a nondescript dermatitis. When my fever dropped, then spiked to almost 103, they decided to do biopsies, cultures and exploratory surgeries. It took 3 surgeries to rid me of the MRSA, but I survived and did not lose my left breast, as they had initially thought I would. This is frightening stuff! Good for you for getting the word out about it. TAKE NOTHING FOR GRANTED, especially not your own health! When in doubt, go to the emergency room!|
|I want to know how is this desease contracted|
|Prayers to all of you who are dealing with this terrible disease...victims and their friends and family. I just got out of the hospital x-mas eve after being admitted Nov.16,2005 with NF! I'm ALIVE after having less than a 10% chance of living. My right arm was not so fortunate but it is minor in exchange for LIFE!! Praise be to God!|
|I find this web site interesting because my older sister had NF in both her hands in 99 (i think it's been awhile) She survived losing only 3 fingers, perminate damage to both hands, and scars that tell a scary story. But she's alive and well!|
|Reading the information from the NNFF website and reading the stories of survivors has been both helpful and inspiring as I have provided care and support for my cousin, who is also a survivor of Necrotizing Fasciitis. I am awed by her strength and willpower and by others who have overcome this illness!|
|My best friend is Carol Rolfe, one of the survivors. Even though I've known her 20 years, I really had no idea what she went through till visiting this site. All of you survivors are incredible and an inspiration. God bless.|
|My 60 year old Aunt, Donna McElroy, went to the hospital 4 days ago ( Dec 29, 2005 ) with large blisters on her left thigh.. her blood pressure was danderously low and she had flu symptoms...the doctors ran many tests and decided she had shingles...sent her home last night with pain meds and antibiotics...this morning ( Jan.2, 2006 ) she collapsed and was rushed to the ER. They said she had Flesh Eating Disease and had 0% chance to live...2 % chance to live with surgery. They have now operated..removed her left leg and scrapped infection from her stomach...many other things going on...I am appalled that a hospital could keep her for 4 days and send her home with such a wrong diagnosis...I do hope that anyone with extremly low blood pressure, flu like symptoms and huge blisters will "push" their doctors..or hospital staff to find the correct diagnosis..I wish I had known about NF disease and looked at this website earlier...it could have saved her leg...and perhaps her life (she is not expected to make it through the night). |
|DISCOVERY HEALTH CHANNEL - "MYSTERY DIAGNOSIS"|
'Mystery Diagnosis', airing on the Discovery Health Channel, covers the epic story's of the struggles of finding answers to a rare disease or disorder. On this episode, we are dedicating a story on a survivor of yours, the co-founder of the National Necrotizing Fasciitis Foundation (NNFF), Jackie Roemelle.
During her segment, we need to show examples of the effects of Necrotizing Fasciitis, displaying major trauma to the affected area. If you would like to volunteer and submit any photos to Mystery Diagnosis, please contact Jon Rafols at the email address given to the right:
The protection of the identity of the individual will be first priority, and permission releases will be given. Those photo's that will be chosen will have a "credit of contribution" at the end of our show. Extended Deadline to all submissions is Friday, January11th 2006. For more information on the show, please visit the discovery health website.
This message has been approved by Jackie Roemmele. All your help is truly helpful. I look forward to hearing from all of you.
Copyright © 1997-2003 National Necrotizing Fasciitis Foundation (NNFF)
All Rights Reserved.
February 14, 2009