YOUR NF STORIES AND LETTERS


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In a message dated 10/25/2008 8:44:11 PM

I went happily into hospital for a hysterectomy, spent a week there feeling OK, came home for a day, went back in because of horrific pain. That was the start of hell for my family and I. The surgeons would operate on me every night after the days normally scheduled operations so that they would have till morning to clean down the operating theatre and contain the infection. After 13 days on life support my husband was told to make arrangements for my death. It was then that a miracle happened, my temp went down and my stats went up. After 16 operations and alot of drugs and over $220,000.00 worth of care my husband and children could take me home. Now 4 months later I can look after my self, I can walk again and am almost back to normal. I believe this infection is no longer rare, I think its growing world wide and I hope the medical profession can keep coming up with new drugs to keep fighting the battle.

Kerrie (Victoria, Australia)


9/16/2008 11:39:30 AM

My name is Steve and I too am a survivor of the bacteria. I had an egg sized lump in my elbow and a local hospital in my area diagnosed me with a ruptured bicep. They continued to do this for 6 days or so until they finally did exploratory surgery on me. The doctor knew it was an infection but not which one. It wasn’t until they actually got another doctor to look at it did they find out exactly what it was. I was actually being discharged when my blood pressure crashed. If it wasn’t for the charge nurse refusing to treat me I would have gone home and died. I ended up losing 4 muscles in my forearm and 90% of my bicep had to be removed and the infection spread all the way in to my chest. I apologize for sounding bitter but I truly feel this could have been caught a lot sooner. If you feel as if you were misdiagnosed don’t be afraid to speak with an attorney. In my case a very big ball was dropped.


07/09/2008 2:56 PM

I was diagnosed with NF on January 31, 2008. I had been sick since the 19th of January with flu-like symptoms. Then on the 27th I went to a local hospital because I wasn't able to go to the bathroom and my butt hurt! When I got there they told me that I had a severe urinary tract infection (UTI) and they sent me home with a catheter. Nobody at the hospital would look at my butt. I kept saying to them, "My butt hurts, why won't anyone look at it?!" If I had known then what I know now, I wouldn't have left that place until someone looked!

On the 31st I felt even worse and asked my father to take me back to the hospital. I had severe, uncontrollable diarrhea and fluid coming out of my bottom that really stunk. My family belongs to a local fire department, he took me there and the ambulance took me to the hospital, so I would be seen quicker. I remember sitting in the hall waiting for them to take me back but then I passed out. My father informed me that nurses would walk by and just turn and look at me because I stunk so bad. They took me back for tests and my white blood count was up to 50,000. They knew that something was seriously wrong. Luckily there was a doctor there that used to work at Shock Trauma in Baltimore on the soft tissue team. When he saw the tests results he immediately called for the helicopter and they flew me to Shock Trauma.

I was unconscious until March 6th! Within that time I had a total of 15 surgeries and then two more after that. The infection started in my butt and spread to my abdomen. The doctors told me that there were several times that they didn't think that I was going to make and actually called the family to come in. They also told me that when they got done cutting away the tissue and muscles that they could stick their hand through my butt and come up completely through my abdomen. I was the worse case that they had ever seen.

I was released from Shock Trauma on March 24th and transferred to a rehab because I couldn't walk from laying there so long. I had a skin graft done to my abdomen on May 20th and was released from the rehab on June 13th. Since then I have been recovering at home with daily bandage changes. They are letting my butt heal on its own and everyone says that it is looking good. I did end up back in Shock Trauma on June 30th and had another operation on my old ileostomy site. It began leaking stool again so they had to stitch it off. It has been a long road and as Dr. Scalea told me, I have come a long way, but I still have a long way to go.

Thanks for listening,

Kim


6/22/2008 10:26:42 PM

Wow! Your website is great ... lots of important info. Trouble is ... I have a problem concentrating on what I'm reading because of the bouncing headers. I don't see the necessity of having headers that jiggle ... capital letters are fine with me but what is the reason for the jiggling? I'm trying to persevere but am starting to get nauseous.

Because my goal is to help keep people healthy, the four small header lines of text that jiggled back and forth on the Welcome Page are now static. Enjoy.


4/10/2008 8:38:03 AM

Hi, I'm writing a feature on skin disease and would like to include your story. Would it be possible to email me high res images for us to include? The magazine is called Chat and will be on the shelves from June. Unfortunately the deadline's pretty tight so if you could let me know as soon as possible whether this is possible, that would be great. Thanks,

Susan Griffin
Features Writer
The Press Association
292 Vauxhall Bridge Road
London, SW1V 1AE


3/28/2008 5:51:09 AM

Dear Doreen,

A random magazine search for news reports brought me to wikipedia.org, and then eventually to your website. I read your story and looked through your pictures, and I would just like to say how much your story has touched me. You’re a true fighter and it is people like you that will eventually make a difference in this world! You have been through a devastating experience but I admire your guts and most of all your good spirits – even though I imagine it must be hard at times! I sincerely wish you all the best for the future, and hope to read many happy stories in your website!

With best regards and utmost admiration,

Alexandra Phasaria

Editor
DRIVE Magazine
Mediatrends Ltd.
www.drive.gr


2/9/2008 11:27:05 AM

My mother has been in an assisted living residence for the past five years. She has been hospitalized many times for various things. Recently, I went to visit her in the hospital where she was being monitored because of pneumonia and some uncomfortable feelings in her chest.

I called the nurse in to talk to her about what was going on, and almost as an after thought, she said my mom tested positive (from a nose swab) for MRSA. If I hadn't called the nurse in (because my mom was doing fine and probably going to be discharged, so I might not have) -- I don't think a soul would have told me about this.

I guarantee I will be carrying hand sanitizer with me at all times and maybe some Lysol spray. It shocked me that both you and your sister-in-law and the woman who rents a room from you, all contracted MRSA. It is frightening. I guess the hospital workers only care about themselves, not the relatives.

God bless you and I wish you well and good health,

Janice M.


11/9/2007 3:00:28 PM
Hi Doreen, I just want to thank you for having the courage to be open and frank about necrotizing fasciitis and for being a source of support. I recently underwent treatment for NF this spring on May 12th and 13th and ended up spending 13 days on round the clock high dosages of IVs. Like you I have had my arm pit area disturbed where lymphatic tissue has been disrupted. It has left me with continuously fearing me developing lymphadema and has left me with continuously focusing on the health of my left arm and what factors led to me contracting it. I was always in very good condition, being an avid runner and someone who kept a regular exercise routine as well as a healthy diet. The psychological impact of this illness cannot be underestimated as I believe it leaves many survivors feeling that they have to put on a stiff upper lip through all of this while inside fears linger regarding the trust they must rebuild in their own bodies to ward off future infections as well as facing a journey to overcome the impact of something that shakes their sense of mortality so clearly. Finding answers regarding the triggers of this illness leaves me often with more questions than answers. It is difficult to find true understanding from the medical community as well as those around because their frame of reference is so often isolated from this particular experience. So I want to say I greatly appreciate your courage and strength for staying strong as an advocate to inform. I can empathize with your frustrations in regards to hearing from less than supportive writers, but want to say, some of the best things in history have come from brave people like yourself, who have persisted through storms of dissupport. Thank you once more and God bless.


8/6/2007 12:05:01 PM
My daughter had four surgeries for NF starting three years ago for what we thought were spider bites, but we now know was MRSA. The last surgery was two years ago. For the last year she has been on different antibiotics for some mysterious infection. While she use to do ballet three to five hours a day, she is now so exhausted she goes home from school to bed. She has quit her professional ballerina program and all physical activity. Sleeps 13 hours a day. Her lymph nodes are swollen in throat and a bit in groin. Each doctor initially says she must have strep and mono, because of her extreme exhaustion, red throat and swollen lymph nodes. She tests negative each time. Has had full allergy work-up twice. Negative. CT scan for sinus infection. Negative. Now is seeing two cardiologists at Children's Hospital because they think something is wrong with her heart that makes her so exhausted. Nobody is looking at the left lymph node in her neck which is now the size of a golf ball. The cardiologists tell me to take her back to the pediatricain because there must be an infection, but these two pediatricians (supposedly some of the best in Washington, DC) have just kept prescribing antibiotics for the last year. Could you please tell me if this might be similar to what happened with your lymph node and if there is any test I can have them do to figure out what is wrong? We go to the cardiologists for a tilt-table test tomorrow. -Laura


7/29/2007 2:21 PM
My Son and his battle with NF: Let's see it all started Valentines day, February 14th 2007 at aprox 2:30 am. My son woke me up in a lot of pain. He said his shoulder hurt him really bad and he could not bear to move or lift his left arm. He was crying and if you knew my son you would know this is far from normal for him. He was 17 and very much involved in sports at school. At the time all happened he was doing wrestling with the state tournament approaching. Knowing the pain I could see he was in, this was an emergency and I needed to get him to the ER as soon as possible. When we arrived I gave them what information I could that might help them find what maybe wrong. Which was he had a injury to his shoulder during a match in November. They took an x-ray of his left shoulder. Looked over the x-ray and said that it did not appear to be dislocated. They gave him pain killers and sent us on our way. Now mind you if your a parent you know when something just don't feel right. We got home and I could not bear to see my son suffer as he was. My other thought was to get him in to see his doctor. I had to wait until 8:00 am when the doctors office opened to get him a appointment. Their soonest was 1:30pm. I said I will take it if that is the soonest one possible. It felt like eternity just waiting and watching my little boy in pain. I call him my little boy even though he weighed 220 lbs and 5 ft 11in tall. He is my youngest of three boys so he will always be my little boy. Finally it was time for his appointment. The doctor came into the room and did the usual poking around and questions. She then looked at us and said this young man should be in the emergency room. I stated to her we were there this morning and she just said I want you to get into your vehicle and go straight there and I will call them to let them know you are on your way. Yes my heart dropped but I also felt relieved that finally we might get some answers to this terrible pain he was in. Now we arrive and they admit him once again and put him in a observation room, which means they will work on trying to figure out what is wrong. Oh the ordeal he had to go through. Blood test that hurt because he has very deep veins. MRI which caused him great pain to lift his arm during that process. Other test such as throat cultures etc. They even did another x-ray. By this time he had a 103 temperature and vomiting. The only thing they could do for him was painkillers which I swear had very little effect. As evening approached I knew it was going to be a very long night. We had to wait for test result. I stayed with him right by his side praying God would help us to find the answer. When morning finally arrived they had a joint specialist come in and stick a needle into his shoulder joint to see if there maybe fluid there that should not be. It cause me more pain then my son I am sure just to watch this process. My son was in to much pain to even care by this time. The day was long, very long. By late afternoon a doctor who was on shift at that time had the nerve to come into the room and start babbling about how sometimes a virus can act this way. I wanted to kill him!. I think he knew by my look what I was thinking and exited the room. The PA doctor on the same shift came into our room shortly afterwards and felt my sons neck and shoulder. She decided to order a CAT scan. When they finally got the scan, I watched the doctor which made me up set and the PA doctor from our room look at the CAT scan. Then the doctor left and went to another level in the hospital which left the PA doctor to over see things. As evening was approaching all the sudden we hear the PA doctor yell out I FOUND IT! Oh my gosh I get goose bumps just recalling the memory. She was not sure what it might be but something was in the area of his collarbone. I feel that I owe this PA doctor my life. I will be forever grateful for her determination. She informed us that he will have to be transported to OHSU (Oregon Hospital of Science and University). Up on arrival there he would go straight into surgery. We we were informed that OHSU would need a copy of the CAT scan which would take a little bit for them to get a copy of, but my son could be transported right away if someone stayed behind to wait for them. I hesitated but volunteered knowing the faster my son could get to the hospital the faster he could get better. I cant tell you how the clock ticked ever so slow during that time. Knowing my son was being transported by ambulance and I could not be with him. Finally something was being done. I got the CAT scan and hurried to OHSU. Only to be told my son was in surgery and it might take about 45 minutes or so before he will be out of surgery. I went to the waiting room to wait. An hour pasted and I was getting real nervous. Finally a doctor the (ENT specialist) came in. He was shocked to see over a dozen people waiting for answers. He has a very big and loving family waiting eagerly to know if my son was going to be okay. The doctor went on to say, that my son will be in ICU to be watched and the surgery went well. He had a very very bad bacterial infection under his collar bone they had to clean it out and put drain tubes in. He also stated that he has done a lot of surgeries but has never ever smelled something so foul in his life then this. Another 24 hrs would have been devastating. Now we just wait and time will tell if they got it all. I wanted to see my son so bad and only a few of us could see him at a time. We were directed to ICU and told before entering what to expect. I know they tell you but its so hard to see tubes and machines every where. He had a incision approx. 5in long just above his collar bone with drain tubes out each end. I tried to stay strong for my son but the tears just fell. Seeing him so weak was very hard. I stayed there by his side through the night and prayed. He was in there approx. 24 hrs or so. Then they put him in his own private room. I found out one of the test they took at the first hospital was tested positive for strep throat. Every morning they came to draw blood to see if his white blood cell count went down at all. They said it was at 22 and the normal was around 11. They checked his blood every morning before he could eat anything just in case he was to go back into surgery. Taking blood was becoming painful for him each time they did this because he has the type of veins that are very hard to find. He was unable to eat anything until they had blood results and the doctors okay. By this time it was always approaching close to lunch time. I stayed with him every day and night with the exception of driving home in the evening to get me a shower and return as soon as possible. My son is not the kind of kid who speaks up on what he needs so I really felt I had to be there 24 hrs to be his voice and his mom. Guess you could say he don't like to impose on anyone. Plus he is such a private kind of person. I told him many times it is their job to look after him. Guess I should of told myself that cause I found it much easier to change his bandages myself rather then hunting down a nurse each time my son would say something stinks. Mind you the first few days it drained pretty good so I was up and down applying new gauze each time. We even had to change his sexy hospital gown if any dripped on it. He could not stand the smell. After about the fourth day he was complaining of his lower back hurting him so I did plenty of back rubs to try to keep him comfortable. He also started to experience pain in his upper back between his shoulders. We figured it was just the comfortable beds they furnish and my son was unable to get the exercise he was use to. Well it was going on about a week now and he was so wanting to get out of that place. The doctor decided to release him. I was so excited but, I knew my son was more excited then me. He was still weak which I just thought was due to all he has been through. When he stepped on my running board to get into my vehicle his foot slipped but he managed to catch himself. He tried not to cry but I seen it in his eyes and I cried which triggered a emotion of tears. I believe my tears were more tears of sadness seeing my son so weak. His was more of happiness to beable to leave the hospital and irritated that he was so weak. He never had anything cause this much defeat on his body. I thought now we were ready for the road to recovery. That didn't happen. Let me explain. He slept in our living room on our recliner because he said it was more comfortable for him. His back was still causing him some grief. I did everything I could think of. Heating pads, ice, pillows, and message. I slept next to him on our futon each and every night waking with his every move and getting up to give him his pain killer medicine that they prescribed. His appetite was not so good. Seemed he could only choke down clam chowder with crackers. I swear the kid was going to hate the stuff in the close future. I took his temperature every time he felt hot because I was directed that if it was to reach 101 to take him directly to the emergency room. It seemed to bounce up and down and come very close to 101 which scared both him and I. It was about on the fourth day while at home I called our chiropractor to see if he could take a look at my son. It was his day off but he was ever so glad to meet us at his office. Course he could not do any adjusting because of the incision he said. He did tell us that it could be just muscle spasms from the whole ordeal and used some massager on his back. This was very little relief but we appreciated him taking time on his day off to see my son. By the next day I called the ENT doctor which did the surgery. I had to leave a message asking for a call back. This was on a Friday afternoon. I received no call back. My son had a appointment set to see him on Tuesday which I felt was not soon enough. I called our regular doctors office which they could get him in on Monday. So was I just being overly cautious I thought? Monday finally came and I explained to the doc that my sons back hurt really bad. They did take an x-ray not finding anything. She felt since he had a appointment with the ENT doctor the next day that she would consult with him. So now we wait again. At his appointment with the ENT we waited in the little room. The moment he walked in he said man you don't look so good. My reply was I Know he is just not bouncing back like he should be. He is weak and his back pains him. The doc ordered a CAT scan. Off we went to get him his CAT scan. When that was done we were told to go back to the doctors office for the results. The doctor came into the room with not so good news. He said it appears it made into the pleural space of his right lung. This is the cavity which holds the lung. I don't think that upset my son as much as knowing he was to be admitted back into the hospital. His doctor now referred him to a chest doctor. He was admitted into the hospital but they had no private room open for him at this time. The only room right now was in the dept where the cancer patients are. It wasn't a private room but they will work on getting him one. I could not stay the night with him. Let me tell you I didn't sleep well at all that night. Knowing I was about 40 mins away from my son in the hospital. The next morning I was at the hospital bright and early. Thank goodness I was. They come in to take his blood. This is the first time I seen him cry from taking blood. I informed one of the nurses of the pain he had during this taking of the blood. Come to find out his veins are collapsing due to being poked so may times. Just a couple hours later they decided to put a picc line in (this is a tube which goes in to a main vein that will release medicine just above the heart). With this picc line they can draw blood and put medicine in it. It took a couple of trys to get it in the spot they needed. Now finally the doctor comes in and tells us the battle plan. They will be putting a tube into his back to pump medicine into this cavity. It will be pumped in and left in there for 4 hrs then drained. This will go on for at least 4 days. After this surgery he will be able to be put into a private room again. They had one open. I was so glad I could stay there with him again. The first time of pumping the medicine into his lung cavity was very hard and painful for him. He could hardly breath and it hurt really bad. We learned that timing of painkillers were very important during this process. He carried a square box with him at all times which was attached to this tube in his back. After about the second day he was able to walk part of the way to the cafeteria. By day 4 he walked the whole way by himself with only a couple of stops to catch his breath. By day 5 he was doing it with no stopping at all. He much preferred the cafeteria food then any food brought into his room. I did notice he was getting better when he ate some of the food that was brought into his room. His appetite was coming back! Remember I said he weighed 220? Well when he came in for the second battle he weighed 190. I was now feeling he was going to get well and so was he. He was doing a lot of grumbling and grouching and just wanted to go home. I knew then he had a good chance that he was beating this thing. What a relief. By day 6 he was released from the hospital with his pic line still in place. For three weeks we had to pump his meds (Piperacillin) into his pic line every 6 hrs. He slowing got back into school. I woke up every morning at 4:30am dosage cause I knew if he was to get back into school and to recover he needed his sleep. I was so scared something might happen at school with his pic line. He reassured me no one would mess with him and it would be okay. It still puzzles me some on how this all started. He injured that shoulder during a wrestling match before Christmas. Had severe ear infection during Christmas then came the strep throat. His immune system was I am sure way down there. So a multipal things all mixed into one made for a very trialing time in his life. Now 8 months later my son is back into his regular routine. He works out every day. He is a senior this year in high school. Right now he is playing football. With wrestling coming up after that. He now has gained all his weight back. He is looking at being the state champ in the 215 weight class come wrestling season this year. He has a huge fan club waiting to cheer him on. He loves his football and wrestling its his life right now. I cant take that away because of my own fears, even if this maybe part of the cause. The only thing I can do is pray to God each day that He keeps him healthy. I am so ever grateful my son did not lose his life or a limb. He does have a scar above his collarbone which I feel is pretty darn lucky comparing it to a lot of other stories of this devastating disease they call Necrotizing Fasciitis (NF), best known as "the flesh-eating bacteria. -Terri


3/8/2007 7:51:55 AM
Dear Doreen: I was so glad to have found your site last night. I was trying to explain to some friends just exactly what NF is, what causes it and what are the outcomes for most patients. "Why?" you ask? I took a very dear friend of mine to the hospital yesterday morning for what I had suspected to be an ongoing case of NF. He had been to our local hospital here in our town (we live in the east of Salem, Oregon) this facility is only a Level 3 facility, and as of lately has diagnosed pretty much any infection as being "MRSA" compromised. Even before they run tests, or lance open the hard very painful swelling in your abdomen. I know that as fact because that's what happened to me, of which I will explain later. Anyway, he had been there something like 3 times in the last 2 months and his last visit just 2 weeks ago consisted of leaving an IV line in and going to the hospital for infusions of Vancomycin every 2 hours. They only did this for about 4 days, pronounced the "MRSA" to be in a state of dormancy and to come back if he had any other further problems. As all NF survivors and contractors know, it doesn't go away, it just hides, incubating, growing, building up strength, mimicking other cells so not be ate by the defenders of immune system. He and I had several arguments over this whole MRSA vs. NF and by default, being the man he is always won, gosh, if I was right how would that look? Well when he showed up here yesterday morning at 7:30 am I took one look at him and said "No debating this issue anymore, I am right, I KNOW by looking at you and that nasty gaping wound on your abdomen (he had two Band-Aids over it trying to stop the black goo from oozing out) and the various others I could see forming as we spoke and the amount of redness rapidly spreading you have NF and I am taking to a hospital that if the bottom line is they can't do anything but stabilize you and turf to a Level 1 trauma facility with a burn unit then so be it ... I will make sure it gets done. After a 45 minute harrowing drive southwest to a hospital located within the campus of one our universities here, I managed to get him into the ER, and the doctor attempted to biopsy his largest wound (he got hit, my friend drugged and restrained for second biopsy) he was admitted, given enough pain meds with massive antibiotics on board, and transferred to an isolation room and scheduled for surgery this am. He has been given a 30% of surviving the surgery ... he has other issues that make him a less than ideal candidate for surgery, the biggest being his weight, but I am pretty sure that when he arrived at home yesterday he was in the beginning stages of MSOF, and after our initial triage, he was progressing to being in full shutdown. Actually he did call me twice during the evening yesterday, one to thank me for taking him, he said that his doctor told him that had I not gotten him in there when I did, he would've died within the next 8 hours. Now he needs to have the same amount of willpower to come out his surgery. I want you to let Nora know, I was asked why I took him so far from our local hospital and one only 10 miles west of our town by the ER physician and staff, my response? I told them I had worked at a level 1 trauma facility for about 2.5 years in the Respiratory field, I had seen many cases of NF and knew his best chances of survival would be here, cuz they wouldn't try and kill him with egos, ignorance, inability to think out of the box, and just general God complexes all over, and that they wouldn't kill him. I even asked that if they realize his case is one that is beyond what they feel he needs medically to please see that he is transported to the facility I worked at just north of my town by 1 hour. He promised he would. Now for my issue, I did receive a spider bite last summer and it did turn into a situation of MRSA, I then around the last part of January redeveloped another nodule much like my spider bite in the same area again. The second time I was able to keep is open and draining, immediately got my 2 antibiotics on board and it has healed really nice. So my question to you is this? I know that once you are exposed to MRSA, you have it with you always. (Oh I did find the spider that bit me several weeks later in my room, it was huge and its called a NW Territorial Brown Jumping Spider) Is it always just gonna pop up now, much like a cold sore does? And what exactly can I do if so to prevent it from happening? I am pretty prone to cold sores also and I know that having a good healthy metabolism, no stressors when poss, breathe, drink lots of water. All the usual routine. Anyway just curious, if you have time I will be awaiting your reply, and please say a prayer for my friend Brad, he needs all of us to be telling him [to believe].


2/8/2007 8:56:45 PM
Hello There. I am a survivor, or I guess I should say I am surviving. I had a baby boy in Aug of 2006 by C-section cut side to side, and got the nasty NF. My doctor wouldn't listen to me when I told him I was sick, I told him about fevers and nausea while still in the hospital from the birth. He told me the fevers were my hormones, the pain I felt was my need for growing up, and the drainage was from the surgery and was perfectly normal. I saw him 2 days after he released me from the hospital to get my drain removed. I had a spot on my ab that was green in color, still having fevers and nausea, with a lot of pain and was told basically to allow the baby to be the one doing the crying. the next day I called the office to let them know I had redness and was hot all around my ab and there was a smell. I was told that I had an appointment coming up I could wait. The appointment day was finally here. The spot had consumed my first incision (seven years prior I had a C-section done by the same doctor but cut up and down) and was holding fluid and stunk horrible. he said I had a little infection and gave me antibiotics and told my husband to take me home and put me in the tub to soak. He then instructed his nurse to shoot peroxide in the bubble and take out the staples, she took out the staples and bandaged me up. two days after that I ended up in the ER, the incision from 7 years ago busted open while I was soaking in the tub. The doctor got there and told my husband to put me in the car and drive an hour to another hospital. once there I was in the OR within 30 minutes and they told my husband this was neglect, call your family she is too far gone. But I wasn't, with gods help and skilled Dr.'s a team of 8 of them I made it through. I lost most of my ab down to the muscle mostly but a few spots of muscle were removed. I spent 2 weeks in the hospital and was sheer amazement to the team of doctors. I know God brought us all through this together. I came home to a baby I really didn't remember, it seems like the fevers took my memories. My baby knows the voice of my neighbor (that had him while I was sick before I went to the hospital and while I was there) better than he knew mine, she could settle him quicker than I could. I also lost my ability to nurse him. That was where the pain hit me hardest. I had people come visit me while I was home and don't remember them, as well as when I was in the hospital. I missed my other sons birthday, I won Worst Mother of the World award I am sure. Then my poor Husband, he cried and prayed and his heart was torn. The father of a new baby facing raising him and our other 2 alone. I really feel bad for my Mother and brother, we buried my other brother in May just 2 and a half months prior to them being told I wasn't going to make it. How horrifying for them to go through that. Now I live in fear of doctors in general. I just got out of the hospital due to redness above my wound. It just doesn't seem like there is an end to this I am kind of thinking there is never any justice either. I could have spewed when I opened the bill from the doctor that ignored me, my after care appointments bill: $926.76 for what? For him to tell me to grow up? I am so angry at him and at the hospital. In my case the doctors were able to find that my NF came from E-coli, and they ruled out the possibility of it coming anywhere from me. so that means it came directly from the C-section. Isn't it funny how you have to sign those forms saying they aren't responsible for your infections ... GRRRR. Well, I just wanted to leave my story, and vent. I do believe I have achieved the latter. I pray you all get back to healthy. Thank you, Doreen, for a place that lends an ear to someone like me. God bless.


1/30/2007 12:46:53 AM
Hi. My name is Pam. I am from the Greenville, SC area and I am a survivor also. I had a severe case of NF in March of 2005 -- hard to believe the nightmare has been almost two years now. And, YES, I do believe in angels -- they were with me that night in the ER when the doctor knew what it was as soon as my boyfriend brought me in. I had a pimple on my groin for days and it HURT so bad I could hardly sit. Chris tried to pop it, but couldn't. He took me to work that evening, but my boss said to go to the ER if I was so sick. He was being an ass, but he saved my life! If I had just gone home, I would have died! Anyway, the surgeon had to remove a large chunk of my right inner portion of my buttock (so now I am half-assed, LOL), plus muscles,tissue, etc. I had a wound vac attached to my butt, and could only lie on my back (healing took 9 months) I was in various hospitals for almost a year-recovering, getting strength back, trying to learn to sit up, stand and walk again. I only had a 3% chance to live, so my sisters came up here and took all my stuff and my son, and left me-thinking I was going to die.I surprised them though -- I lived! So far, I haven't met anyone who would consider reconstructive surgery, even though I could have my hernia fixed and move the excess fat from to the front to the back, where I need it. I'd like to chat more, but I have to go. Got a Dr. appointment tomorrow! Peace!


1/24/2007 10:20:43 AM
Hey Doreen!! I used to frequent your Extreme Ghostbusters fan fiction site nearly 10 years ago, under the 'net handle "Pythia," and over the years I'd returned to look over the site and reminisce. It wasn't until today that I visited again, clicked the link to the Annex Site and saw the announcement from 2004 about your condition. Holy cow!! I'm sure you get letters of amazement and surprise a lot, but my god, woman, you are my hero! Your courage is absolutely inspiring. I'd wondered what you'd been up to all these years and while I am very sorry about your previous condition, I am VERY happy to hear you're alive and well, in a manner of speaking. I do hope this e-mail finds you in better health and it has been great to finally drop you a line after so many years. Yours respectfully, Christine


1/23/2007 2:46:49 PM
Hi Doreen, Thank you so much for your response. I have been a true mess through this ordeal. I believe since I emailed you the first time Cathy has went up and down hills. She had several more operations to remove more dead tissue. As of last night the doctors said "they don't believe she will have anymore surgeries." So, they closed up some wounds and she is starting to heal at this point. I went to the hospital last night and she was somewhat alert. It's very sad. Cathy knows something is wrong with her face and neck. She is in a lot of pain and hates the trach in her neck/throat. The feeding tube is also bugging her and a line in her chest. But she is still with us. I have to say she is a fighter. She also has a little bit of Cathy in her. When the nurse would leave her room she would point to a cup of water on the table and demand with her eyes I give her some water. As soon as the nurse would return she stopped pointing, because she knows she cant have any water. Also, today she wrote on paper to her husband "take me home now" her husband told her he couldn't, and she wrote back "OK tomorrow!" Cathy won't be home for a very long time. She also has to learn to talk all over again and the doctors are not sure about her eating again, or for a long time. About you ... I'm so sorry to hear you are fighting another staph infection. I will pray for you as well. This world needs a serious heads up on the matter of NF. Cathy's husband and I see a lawyer on Friday. Cathy was treated like a druggie looking for pain pills when she was fighting for her life. I hope you start feeling better soon and please keep your chin up. You must be a true fighter as well. If you need to talk, please email again. I also need someone who understands what a nightmare this is. God Bless you ... Let me know how you are doing. With Love, Tammy


1/19/2007 9:28:45 AM
Hello, my name is Alysia, I am from Canada. I just crossed your website about Necrotizing Fasciitis. I am doing a project in college about this disease. Last April, my mother also had flesh eating disease in her leg along with many other complications! It was such a hard time for my family, and until this day I cannot stop thinking about it, it haunts me constantly. I was glad to hear your story, and see your pictures. It hasn't been a year for my Mom yet, but your arm looked a lot better then, so I am excited to see the change in her too! She is still unable to walk yet, but she is very determined! I wondered if you had any more recent pictures? or if you have done any more plastic surgery on your arm? And also, if your arm is able to function properly completely? I know it's a lot of questions! But if you have the time I would love to hear from you. Thank you very much. Sincerely, Alysia


1/16/2007 7:16:07 PM
Hello, My name is Tammy and I have read your story. I'm so sorry to hear of your pain. I have a big problem. My best friend is in the hospital for NF or gas gangrene. Her name Is Cathy. For 16 days, I have been back and forth to the hospital praying for her to recover. Cathy had a wisdom tooth pulled on Dec. 23rd. She came home from the dentist in pain, took some pain pills and went to bed. Over the next 10 days she went back and fourth to the emergency room begging for help. They sent her home and told her it was nerve damage or Temporomandibular Joint (TMJ) Syndrome! She went to the ER about 4 times with no help. On the early morning of the 2nd of Jan. she called 911. Her face and head blew up the size of a beach ball. They finally knew something was wrong. The hospital transported her to Portsmouth Naval hospital where they did emergency exploratory surgery in her jaw area only. They told us after surgery she would recover and be on her way home in a few days after the IV antibotics and fluids were given to her for dehydration. I knew something was still wrong! How could they say she would be OK when they never found a thing? So, 48 hours go by and a big change of plans, her swelling was worse and her breathing was bad her heart rate was up and blood pressure, so they decided to do a CAT scan. Cathy asked for this a week ago, but remember she had TMJ, right? So after the Cat scan it showed NF and she has had surgery everyday for the next 12 days. She has had a total of about 13-14 surgeries. She had to be transported to another hospital with a hyperbaric chamber. Cathy is cut from her neck to her chest bone on both sides of her body. She has had muscle removed from her neck and chest. Also tissue from her face, chest, neck, head, mouth. She is cut from ear to ear. I'm at a loss. Can you ch an a feeding tube. She is on the BIG GUN ANTIBIOTICS and is in an induced coma. She has been this way for 16 days. Her kidneys and lungs are good. her heart rate is up and so is her blood pressure. Her surgeon said she might only have to have one more surgery and she is through with her daily treatments of the hyperbaric chamber. The surgeon also could not tell us weather she would make it or not. Then he said one day, "She might have turned the corner for the better. The nurse said otherwise. She said PRAY! I'm at a loss. Can you please give me some insight on what to expect. I need to know the hard truth. I know only GOD knows, but all the research I've done seems hopeless. She also has the gas gangrene. Please..... I'm so stressed out from not knowing what's next. Can you please give me some insight? Thank you so much, and again so sorry for your ordeal with NF. God Bless, Tammy


Received on or around 12/18/2006 ...
Dear Doreen: First, let me say how blessed and highly favored you are to be here to tell your story and support others with your website! My name is Trina and I'm doing research for a friend who contracted Necrotizing Fasciitis after having what was suppose to be a simple fibroid removal. She was just released from the hospital and is going through it all. Stress, medical bills and slow healing. I would appreciate it if you would be willing to answer a few questions. Your review and consideration is greatly appreciated. -Trina


11/11/2006 11:24:45 PM
Hi Doreen, I read your story and I must say, you are a brave and lucky woman! Not only for being alive, but for having the kind of friends you have. I need your advise, I believe my mom has the same bacteria you had. It started as a bruise then the blisters appeared and popped up. She has been hospitalized for about two weeks now but the doctors have never mentioned it might be this flesh eating bacteria. Now that I read your story and that I've been reading articles about this disease I'm pretty sure that that's what my mom has What should I do? Should I take her out from Harbor UCLA and take her to Olive UCLA? I don't know what to do. The doctors at Harbor said that if the infection reaches the bone, her leg will have to be amputated. I know my mom won't be able to take that and I do not see her with out her leg. Please tell me, what should I do? Thank you! - Maria


10/13/2006 3:24:19 PM
Hi, I am a mum, my son is suffering from this horrible disease. I am a young 63, my son lives with me, after separating from his partner. He went to holiday to Jamaica 4 weeks ago. Came back on Monday morning, went to work Tuesday night, he does night work, and on Thursday, was in pain in his leg, went to hospital, who said he didn't have an infection. Come Monday, in terrible pain with his leg, went to doc, who sent him to hospital, when NF was diagnosed. Operated on, and now, two weeks later, he looks and feels a lot better, but his leg is a mess. Next week, he is going to another hospital to have plastic surgery. What I need to know is, approx., how long do u think it will be before he comes home, although he may need treatment at home? By the way, my son, is 42, but I luv him and need to know if he is out of danger. Can u give me a clue? -Sheila, Robs mum


10/7/2006 2:44:41 PM
Hi, I'm from London, Uk, my son has just come out of what we call our intensive care unit, having had this horrible decease. He went to Jamaica for a holiday, got a scratch playing volleyball, then coming home, a few days later, his knee swelled, went to hospital said it was just a swelling, haha, then it hurt, then went a funny colour, he went to our doctor, who sent him to hospital, they said it was NF, had an operation, but luckily, after taking parts of his leg out, they think they have contained the spread, and after 6 days he has now been moved from our I C dept. to an ordinary ward, Does this mean he is out of danger???


9/10/2006 4:14:16 PM
Hello, My wife went into Pittsburgh's Mercy hospital on 10-3-05 for a Hysterectomy. The morning of the surgery we told hospital doctors that my wife still had a sore throat, they ignored us. My wife then placed this information in the preoperative anesthetic evaluation form where question 6 asked " Have you had any of these symptoms in the past week? A Sore Throat? A cough or cold? My wife then checked the yes box's for both answers. My wife then developed the Flesh Eating Disease called Necrotizing Fasciitis in her surgery incision 6 hours post surgery. My wife then underwent 5 emergency surgeries in three days to save her life, she was on a breathing machine fighting for her life. In all she had 7 surgeries in 8 days all because the hospital did not listen to us about her having a sore throat the morning of the surgery. Strep throat contains the same form of bacteria that causes the Flesh Eating Disease, we have now uncovered evidence that Mercy hospital of Pittsburgh has changed my wife's answers on the form where it asked the questions about having a sore throat and being sick where she put yes to these questions. The hospital has changed her answers to NO to possibly try to cover up their terrible mistake that almost cost me my wife of 25 years. Since this terrible ordeal has changed our lives all the hospital can do is keep sending us bill's, Imagine. I think the public has a right to know how a sore throat and the ears of hospital doctors who were not listening nearly cost a woman her life and suffered a horrific ordeal. Necrotizing Fasciitis comes with a life sentence. -Blaine


7/14/2006 7:33:11 PM
I just have to say that it helps knowing that there is someone to talk to. I have kept this built up inside me for almost 2 years now and I just don't know what else to do. In fact I have been put on happy pills but when the time of the month comes around let me tell you I don't think those dang pills work. I am going to put my story out there but first I want to sit down and type it all out, word for word, so that it all makes sense. I read another story the other night about a lady who got it twice after giving birth to both of her children in the same area as mine. I wanted to fall out of my chair, I tried emailing her just as I emailed you but the email came back undeliverable so I guess I am going to have to keep trying. It really helps talking to other NF survivors even if its not in the same area as mine, because I feel that they know what I am talking about. Well I really appreciate the talk and I hope to keep in touch with you. You have seemed to help me a lot. And I thank you for that. And thank you for mailing the book to me. I cant wait to read it. -Nicole


7/12/2006 5:40:32 PM
Hi my name is Nicole, I am 27 years old and in 2005 I had a horrible experience. After giving birth to my first child. I was rushed back to the hospital and then transferred to another hospital. I have no idea how I received this infection, I can honestly say that its been horrible and I don't have any one to talk to. I just don't even know where to start. If you wouldn't mind talking to me, email me back.


6/18/2006 3:03:00 PM
Hi Doreen, I'm a Kid 15 years old attending high school. For the end of the year project in Biology we had to pick a medical subject and do a poster on it. I chose "Flesh eating Bacteria" and had Necrotizing Fasciitis pop up when I searched it online. Its amazing that there are survivors, and hearing their tragic stories ... it's so horrible because no one's really aware that flesh eating bacteria does exist. It's seen as just a myth brought about by movies. I hope one day that people are more aware. :-) Best of luck with your website! -Amanda


5/25/2006 7:31:16 PM
Hi Doreen, How are you doing? I hope all is well with you. I wanted to let you know that I finally found the courage to wear short sleeves on a couple of different occasions. It's a beginning. Your courage helps me and I think of you and other people I know who struggle with their scars. Thank you for sharing your story becasue you help others by doing that. I hope you have special people in your life. I have been lucky and have some very good people in my life. I hope you had a great birthday. Hope to hear back from you soon. Take care. -Pam


5/14/2006 11:34:04 AM
Dear Doreen, Thanks for writing back. I am glad to know you are doing well. Being that you have experienced the same loss as me I do know you understand how I feel. I hope that I do find the courage this summer to wear what I would like. I want to tell you that I really love being a nurse. The reason I became a nurse is because of the care I received that meant so much to me and I wanted to be able to give that back to others. It is a rewarding job. I am glad that I wrote you. I will think about you and your courage as I try and venture out this summer in short sleeves. Take care. -Pam


5/11/2006 8:50:43 PM
Dear Doreen, My name is Pam. 16 years ago this month I contracted NF and lost some of the skin off my left forearm, all of the skin/tissue/fat, and both of my breasts. 16 years later I still struggle with what I look like. I have had over 100 reconstructive surgeries and I have breasts again however the nipples didn't turn out well so now I am on a quest to try to have that improved. I was only 27 at the time of my illness I'm 43 now. My infection started from IV drug use. I am clean 11 years now and have accomplished a lot in my life. I went to school and am now a RN, am raising two grandsons on my own, and buying my own house. Anyway, I am touched by your story and your courage so I wanted to write. Thank you for showing your pictures. This is my year to try and wear whatever I want and feel comfortable doing it. I am tired of living through these hot summers in long sleeves. I hope you are doing well.


4/4/2006 8:55:49 PM
Dear Doreen, I am writing you becauses I have spent the last 3 hours reading your survival story along with many others from the NNFF website. Your survival and story are both truly amazing and I am glad that you took the time to share your story with the world. I am currently a student in Indiana University's Doctorate program in physical therapy. I have one year left and am enrolled in a "wound care" course. I chose to present the topic of NF as I have always thought it to be a curious condition. I will be presenting on the general characteristics of NF as well as its implications for physical therapists in woundcare and its effects on mobility. I was wondering if you would mind me using some of your pictures in my presentation to my classmates. It would be so beneficial to my classmates if they could see your pictures as I describe how it progressess and the different treatments that can be usesd. As PT's we are responsible many times for woundcare and ultimately, helping patients to regain mobility and function- strength, range of motion, etc. I appreciate your time and am deeply greatful that I read your documentary on your experience with NF. -Lauren


3/25/2006 6:20:28 PM
Hi My name is Margaret. I am a Medical Assistant student at Vatterott College in Omaha Nebraska. The reason I am writing you is to ask for your permission to use one or two of your pictures that I found on www.nnff.org. I have decided to do my report on Necrotizing Fasciitis because my husbands aunt just died from this nasty disease. I feel that people need to know more about this disease. I appreciate you taking the time to read this email. Hope to hear from you soon.


11/29/2005 11:26:09 AM
hello, my name is mike. i recently sent an email to your mary kay bergman memorial site. i discussed a little about my wife's melanoma experience. she is a beautiful irish redhead with clear, freckle-less skin, a prime candidate for skin cancer. i helped her in her painful recovery. she has been cancer free for over seven years now, and has a huge 7 inch scar on her back. i feel horrible about your plight. i wouldn't wish necrotizing fasciitis on my worst enemy, and anyone who makes light of your ordeal should be ashamed of themselves! i am guilty of seeking out macabre and gruesome photos myself, but not for reasons you might think. i desire to desensitize myself to gore, so i can deal with real life better. people who get their jollies from looking at other's maladies are pigs, and, you're right. they are truly ignorant. you have a wonderful heart and spirit. it takes guts to show pictures of your surgeries, knowing the ignorant juvenile comments they will provoke. i love sick humor (after all, i am a south park, simpsons and frank zappa fan!), but some things just aren't funny. i am sorry you had to go through that; you clearly don't deserve it! when someone who suffers an excruciating ordeal continues to focus on helping and extolling the virtues of others instead of crying in their booze about their own problems, they are a cut above the reeking herd. there is indeed a special place in heaven for you, doreen. may god bless you and keep you safe.


10/16/2005 1:47:27 PM
Thank you for sharing. We recently lost my husband's brother in law to to NF. He deteriorated quickly and they tried to amputate his leg but his system had gone into failure and he never came ouf of the anesthesia. After a day on life support, his wife noticed that his pupils were fixed and dilated and asked that he be removed from life support. She held his hand while he passed away. - Anonymous


9/29/2005 1:53:41 PM
WOW! Your website is extremely helpful and informative ... words cannot even begin to describe the disgust I feel for anyone who would be so cruel, so insensitive, so heartless, thoughtless and MORONIC as to misuse your photos and exploit your pain for their own sick thrill! I really hope and pray you had health insurance so that the doctors and the hospital couldn't render you homeless, gosh, the costs must have been staggering. You are TRULY an inspiration and I am in awe! You are so very courageous and brave! My website (www.cassiesclub.com) speaks for those who don't have the ability to speak for themselves and tell us humans not to kill them just because they need an amputation (or two). I hate to type and run - I still need to look more at your site, I didn't have time today but I'll read it first thing tomorrow - Class starts in 8 minutes and I've gotta run. Have a beautiful day. -Cynthia


8/31/2005 12:14:56 PM
Hi, My name is Elizabeth and I am sorry to hear what happened and I first want to say that I think that you are a very courageous woman to have been through all of this and second, that I had never even heard of this infection (NF) before and I am glad that I was surfing the internet and (finally) found something good to pass on. I am sorry about the jerks who put your picture up...that is worse than anything and even though I don't know you or know your pain I just wanted to send you a positive email to brighten your day. Thank you for sharing your story. -Elizabeth


8/20/2005 12:43:17 AM
Dear Doreen, I was researching this subject because my daughter developed a strange infection on her face within a few hours. she went to her MD who prescribed oral antibiotics which did no good. she was in so much pain i went back with her and they began IV antibiotics. all this was done within 24 hours, I also gave her lots of immune system support (bee pollen, garlic, vitamins) and she was better within 10 hours. I asked them to culture the site before the IV but they refused, and I thought it more important to get aggressive treatment started than to argue so i guess we'll never know what got nipped in the bud. Anyway, thanks for your courage and concern in posting your information. I'll pray for your continued healing. -Barbara


7/26/2005 4:25:12 AM
Doreen, My husband is a survivor of NF and I have not visited the home page for quite some time. I want to let you know that your website is extremely informative and I enjoyed reviewing everything - including your pictures. Yes, NF is nasty - Dan's site was in his neck area. His throat was closing due to the bacteria eating their meals there and I know it was only God that brought him through his ordeal. He was in a coma for three weeks and in the hospital overall for five months. (That combines two stays) Work calls, but I wanted to take time out to say thanks for your site. -Peggy


6/22/2005 10:53:02 AM
Doreen, I just read your story and it was super sad. I am currently recovering from NF and am about to have my 7th surgery. I just wanted to inform you that I and a coworker contracted NF from the hospital after having a hysterectomy. A lot of people don't realize that we go in for "normal procedures" and end up on our death bed. Take Care and God bless you. -Keri


6/16/2005 2:27:59 PM
Doreen, I was just doing some research on staph infections since I am diabetic and have been suffering from various infections for the past few months. I saw a link for NF, and then eventually ended up at your website and read everything in it. NF scares me to death. I was very moved by your chronicles and by what you endured. I had to endure 2 surgeries due to severe infections last November and this past February, and had to have nurses come to my house every day to change dressings, which was very painful. However, after reading your site and what you went through, it makes my experience look like a walk in the park. Stay the course. May you continue to heal and improve health-wise. Thank you for your website. I learned a lot from it and plan to be more vigilent especially with my type-2 diabetes. Take care. -Hugh


6/7/2005 7:28:49 PM
Dear Doreen, My Husband has a site called John's Right Foot ... which ironically he no longer has due to NF. Reading your page is like reliving the week before John's foot was taken. Your mention of the blisters is what is most interesting as this was happening to John's foot in the Emergency Room I sat and watched as the blisters appeared and broke open. I will add your site to our links we get a fair bit of traffic and your case is so very important... it was quick and ruthless like John's encounter with NF. The symptoms, flu-Like, tenderness etc. Thank You for making contact, you are the first NF survivor we have met online. Our thoughts, Hugs and prayers are with you. -Lee and John


6/6/2005 12:22:57 AM
Hi Doreen--I read your story not long ago on the NNFF website. I am a survivor myself so I definitely sympathize with you. The reason I am writing actually, is to tell you the strangest thing just happened--I was browsing some pictures on another website, and came across one that was AWFULLY familiar. Sure enough, I compared it to your photos, and it is indeed one of your photos. I apologize in advance for some of the content on this site, be forewarned much of it is very graphic/disturbing, and sexual in nature but I just wanted you to know your picture is here in case you want to email them to remove it. [link removed] I know once our pictures are posted on the web, it is not far-fetched that someone else might 'steal' them, but I really don't think this is an appropriate place for your picture and I feel horrible. I am just glad I saw it and could point it out to you. -Sheila


5/18/2005 6:03:00 PM
Wow ... all I can say is wow. I also suffered from NF. Left arm though. Started in Nov 03, a month in the hospital, 50% chance of living, 20% chance of keeping my arm. I am "fully" healed now, after 12 surgeries and 2 follow ups for scar releases. They took the skin and fatia from the short-sleeve shirt area, down to my palm, and the back of my hand, but I survived. Good luck on the rest of your recovery. Don't get down on yourself, you won the battle!!! - Anonymous


5/11/2005 9:20:02 PM
Doreen, I read your story & I must say that you're a survivor & a trooper. I can't begin to imagine the ordeal you must have gone thru. I can only say that God is still with you. You're an inspiration to many different people of all walks of life. I'll say a prayer for you tonight as I retire. Take care & may God bless you always. -Stuart


5/11/2005 12:19:48 PM
Hello- I'm a reporter at KNBC-TV, Channel 4 in Los Angeles, and we're researching an increase in staph in the general population. I found your comments and email on a website and was wondering if we could chat about the subject. Thank you. -Ana Garcia


4/27/2005 8:17:42 AM
Doreen, I suffered 'flesh eating desease' one year ago March 30 2004. The disease ravaged my lower left leg. Your photos are amazing, I never could look at things like this a year ago, but now I look, and the transformation from then to now is truly remarkable. You mentioned weight gain - I have also gained weight and am working to get it off - it is extremely slow! I had lost about 20 lbs in the hospital - came home - I pushed myself to walk long distances and still gained. Doesn't seem fair does it - we go through this and gain weight too! At least we survived. Thanks for sharing your photos - they are excellent and I wish you well in your ongoing recovery! -Diana


4/22/2005 8:45:23 PM
Hi Doreen- My name is Kate, I am a student at a local community college and I am taking a Microbiology class. I am working on a class project about Necrotizing Fasciitis and I came across your story. I am amazed at all you have been through and hope that you continue to do well! My best to you and thank you for sharing your information with the world!


3/20/2005 9:09:33 PM
Dear Doreen, I am so sorry to hear of your father's death, less than a year after your ordeal with NF. You really are a strong woman. Take care and God bless. -Ann


2/21/2005 8:31:32 PM
Today we had a very interesting lecture at school about Group A Streptococcus and Necrotizing fasciitis. The fotos shown had such an impact on me and my classmates that I decided to go to the web and do a search on the topic. After reading your story I realize how lucky you were to recover from that situation and how vulnerable we are. Thanks for sharing your story. -Bryan


2/18/2005 6:22:05 PM
Hi There, My name is Tina and I just read your website. I stumbled on it while doing a search for Lymphedema. What a journey you have been on! I hope you are well and doing ok at present and you have received treatments for your lymphedema. I'd like to invite you to join a support group if you aren't already a member of one. I'm owner of lebuddies, ladieswithlymphedema, and moderator of Lymphedema People, http://lymphedema.omno.org. Just wanted to extend that invitation to you. I'm sure many of our members would appreciate your knowledge with NF. We've had some members who have lost limbs to staph and other infections and you'd be a valuable member to have if you chose to join us. Thanks and Best Wishes to you!


1/27/2005 7:43:55 PM
Hello, I recently read your account about your fight with NF. I wanted to email you and tell you that I experienced this same infection in October of '03. I am 18 years old, and am very involved in riding and showing American Saddlebred horses. I was at a horse show in Michigan showing a baby horse when my right arm bumped into a small wire on a stall door. I thought nothing of the poke and went on with getting the horse ready. By the end of that weekend, my entire arm was swollen about 2X its normal size and I was having horrible pains shooting through my arm. I waited a day to see if it would settle down, but it kept getting worse. The night before we went to the hospital, I was in severe pain and could not sleep at all because I was unable to find a position that didn't put pressure on my arm. I remember being so frustrated that night and crying out of pain and frustration. I was taken to my doctor's office on a Tuesday morning and he told me it was probably just a bad cellulits and prescribed an antibiotic. On the way home, I began vomiting and couldn't stop shaking. We had thought that the sickness was because of the pain and the car ride. The next morning, since there was no improvement, I was taken to Riverside Hospital. I was admitted to observation for 24 hours and put on a mild antibiotic. I had several doctors checking on me, but when they realized that the antibiotic was having no effect, I was sent to X-ray. At 2 am, the doctor came back and told me that I was being taken to emergency surgery for debridment of my arm. The redness had moved from my elbow up to my shoulder. After the 1st surgery, they were still unable to determine what I had contracted and how to treat it. I was placed in the orthopedic floor and was given very heavy doses of powerful antibiotics. I went in for my 2nd surgery on the 5th day of my stay in the hospital. The 2nd surgery was to do the rest of the debridment. Unfortunately, there was too much swelling and the incisions could not be closed, so I was sent in for another surgery 4 days later to close the incisions and to do skin grafts on my arm. Luckily, the surgeons were able to close the incisions without having to resort to the skin grafts. They later determined that I had indeed contracted NF from the wire that was on the stall at the horse show. We were told that had we come to the hospital 12 hours later, they would have amputated my arm from the shoulder down. I now have four very large scars the covering the surface of my arm. I have two about 3 inches long on my hand, one scar about 11 inches long on the top of my arm, and one the same size on the underside of my arm. I am so thankful to have made it through my ordeal with NF, and I was comforted to read that someone is able to relate to my ordeal. I am so happy that you survived your fight with NF, and I look forward to hearing from you.


12/14/2004 4:29:47 PM
Hi there Ms. Mulman, My name is Jen Adams and I'm a writer for FHM magazine. We're devoting part of an upcoming issue to stories of survivors, people who overcame interesting and dangerous ordeals, like killer bees, elevator crashes, and hopefully, necrotizing fasciitis. I saw your inspiring story on the NNFF site and I was hoping that I could talk with you for about 10 minutes about how you're a survivor, and what it was like to fight through your ordeal. Like I said, it's only 10 minutes on the phone, at any time you want- does this sound like it would be possible? You can email me back at this address (which is best), or give me a call at 202.297.9185. I'd really appreciate it and love to hear your story.


12/20/2004 5:46:53 PM
Hi Doreen, I want to first wish you a Merry Christmas and happy new year and I hope you will continue to improve. We have finished our project and did great on it with an A. A lot of questions were asked about the disease and I hope we have sent a message to everyone to be more persistent when they think there is something more wrong than the flu or sore muscle. -Debbie


10/14/2004 5:54:19 PM
Hi Doreen, my name is Debbie and I came across your story on the web site. I am very glad to know that you have survived this. I am also sorry for the pain you still endure. What I am writing to you about is this. I am a taking a microbiology class in college and one of our requirements is to do a poster presentation and my group has chosen to do NF better known as flesh eating disease. So I am asking your permission to use your pictures and or story with our presentation. The more I research and learn the more I want to tell people about this. It is truly remarkable that people don't know much if anything about this disease. Please let me know if you are comfortable with us using your story. Thank You.



I am trying to raise funds for a wheelchair, any donations would be great. Thank you!

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