- CASE FILE
I have Necrotizing Fasciitis also known as the Flesh Eating Disease. I am the ONLY PERSON IN THE WORLD that had it attack my lungs.
ABOUT THIS CASE FILE
My main issue is the NEC FASH. I am the only person in the world that not only had it attack my arms and legs but it attacked my lungs as well. Freaked my CDC doctor out. He said it was a death sentence to my family. There was no other case in the world where this had happened. It didn't normally do this. And they can't scrape away lungs...lol. I tried to breath for as long as I could on my own. They thought it was pneumonia at first. It wasn't until I was intubated and about 24hrs later that the test revealed that it was the NEC FASH. They didn't know how to treat it or what the out come would be. Two weeks later I came off of the ventilator which suprised everyone. 300 surgeries in a 3 month period later I was released to the care of my family and an awesome team of home health nurses, yet my doctors again told my family that these kinds of cases usually die within a year. And since they had no idea what it did to my lungs there was NO guidelines or president to go by. To be totally honest, I wish I would have never survived. It took a year for the docs to tell me that it was still in me and would be for the rest of my life. I'm in the hospital for weeks at a time about every 3 months on average. For IV antibiotics to keep it at bay. I am on inhalers for the weakness in my lungs. My immune system is constantly under attack. The slightest cut brings in infection, I left the hospital in a wheelchair and again it was a year before the docs told me that I would be in it for life. I have slight function in my legs but my body is bent like a question mark. Seriously if I stand I can be the end of a sentence. ..lol. Apparently my hips have become narcotic which means the bone in my hips are dying which means as it dies it is turning inward and downward. Hence this pitches my upper body forward, So much so that if I could walk I would fall flat on my face. ..lol. Which is great as a party trick. ..lol. I will need hip replacement surgery soon, back surgery in a few years because of a bone degeneration, I also need a biopsy on my lung because of a recent spot discovered. I also need surgery to release my right leg that has scar tissue that keeps it bent at 90 degree angle permanently. All of my doctors are terrified to do any surgery for fear of waking up the NEC FASH. Which is a huuuuggge possibility. So they won't do anything until there is no choice. Which for now leaves me in horrible pain in my back, my hips, and the rest of my body, not to mention the nerve pain that radiates all the time, Sometimes it makes me literally climb the walls trying to get away from it. My pain meds have been reduced so much that I am in bed all of the time. I have no life. No friends, they left a long time ago. My daughter and my 78yr old mother are my caregivers, I have asked them repeatedly to put me in a home because I hate the burden I have become on them. My pain meds don't cover my pain, I usually end up without by the end of the month. And oh my god I wish I was dead. My poor daughter has developed an ulcer because of my situation. Seriously it was recently discovered, she lost two units of blood and was in the hospital for a week. So I am not lying or embellishing. She says it's not about my situation but its,how could it not be. I find it hard to believe that being on the other side as a caregiver to someone that could die every single day from something that is in their body forever, I mean how is that not stress filled. It is a little cathartic to know what's going to kill me. I mean not many people can say I know how I'm going to die. It's not just having this in me but that no one now's how to treat it. I'm a lab rat to the CDC, which who knew would be one of my permanent doctors...lol. I try to keep positive but being in so much pain just wears on you, your family well just evryone. Even my pain doc doesn't know what to do, his hands are tied because of the new stupid laws on pain treatment. Let those people live one damn day in my life. They would get a gun and shoot themselves, why I haven't is because my family took mine away. ...lol. But I am hanging by a thread here. Literally hanging on everyday to not end it. If I didn't think it would just kill my daughter and my family I would in a heartbeat. I'm sorry to say that I know other people have just as bad pain and have just as many if not more horrific problems but I am close to just giving up. I already don't feel like eating. I'm lucky if I eat once a day. And please don't tell me I need antidepressants cuz I did that and and I got Steven Johnson Syndrome 3 times from that which if you don't know what tha is it where your skin falls off literally from your hands and your feet and your mouth and you lose your hair. So no not an option when you have NEC FASH in your body just waiting for something like that to happen. That would kill me. Wait that's an idea. ...lol jk. ..maybe.... And I tried the pot thing, doesn't work for me. Most doctors won't take me on as a patient and the pain doctor I was with for 8yrs retired because of Obamacare. Where the darn health-care system saw fit to not pay doctors from insurance for up to a year. He ran out of money. The doc that took his cases dropped 300 patients in one week after he swore to us he wouldn't . It took me two years to find another after trying others who just kept lowering my pain med dosage. And my pain doc that I found now only took me on cuz he knew my last guy pain doc of 8yrs. And his hands are tied because of some government system that treats patients with a point system to determine someone pain !!! I mean who or what person came up with this piont thing to know what my level is that the bare minimum of pain meds is good for me when I want to die every damn day.?. Cuz I want to meet this person and show them what it has done to me, to my life, to my daughter to my family. When no other doctor will touch your case, oh everyone wants to meet you and talk to you about it cuz your some kind of circus freak but no we don't want to treat you cuz you might die under our care. You know there is no info out there about NEC FASH. Not on the internet other then news reports of people getting it and dying. I use to be a nurse, I looked it up in a medical book and anything else I could find out about what was in me. You know what I found? One small paragraph of 6 lines describing what Necrotizing Fasciitis was. That was it. It is so rare and most paitents die from it that there isn't more. Nothing about treatment or aftercare or how to live with it. Nothing just nothing.
So this show may have come at the best time, cuz I am willing to fight to stay here, to stay alive, to be the guinea pig the CDC needs if it means it will help. Help me, help others, help the future people who get this, and there will be people that get this. It's out there. Everyone and I mean everyone even doctors ask how did you get this? My mother swears I got it from the hospital I was in the week before. I don't know if that's true. What my CDC doc told me was .....brace for it.... IT IS EVERY WHERE, IT IS ON EVERYTHING WE TOUCH ON A DAILY BASIS. Freaky right? But... you have to have a really weak immune system. Me I was severely anemic. They had to give me 9 units of blood. And have an underlying condition, me I had a blood clot the size of a grapefruit, it was a deep vain thrombosis and the last thing is a cut that has direct access to the blood stream so it can enter and take hold. So unless you have the three things you need to get this don't worry too much, just wash your hands a little more often and take care of any cut right away. And keep you health up. You should be okay. As far as this show goes your my last hope for even a little better quality of life. You people out there are my last hope. You doctors and specialists are my last hope. I'm so sorry to put this all on you but it has come to this point. If this doesn't work. Or help even a little then I give up. For five years I have been fighting this thing that was never suppose to stay inside of me. They usually scrap it all away till you have health cells. Then you go on with life. I have no life right now to go on too. All I am is a petri dish waiting for the damn thing to grow agian.I don't want to be a petri dish anymore! I want some of my life back. I know I will never be 100% but I'm at a big fat 0% right now and that's not life worth living. So please don't be afraid to help me and I will do my best to help myself and others too.I'm sorry this was long but there is alot wrong. Thank you for allowing me to post this.