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Audrey Hepburn: Beauty, Class & a Kind Heart

Wednesday, May 18, 2011

I Hope You Will ALL Read this! Meningococcal Meningitis, 1 Hell of a Disease!

My "collection" of wristbands from all of my hospital stays & surgeries!!

I know most everyone is aware that I got sick & something really bad happened, but most people don't know the details. It's not always easy for me to talk about it to people who knew me in high school during my "glory days". It's kind of ironic (in a REALLY cruel way) that I was a dancer. Anyway, back in 2001, I was at a keg party w/ a ton of people. The next day I started to feel sick. Naturally, I thought it was just a hangover, so I ignored it. The following day, my condition was getting worse. I had a really stiff neck & a killer headache. That night, I woke up & could immediately tell I was about to get sick. I jumped out of bed, made it 2 or 3 steps & collapsed b/c of how weak I was. My mom heard me fall & came & picked me up and carried me to the bathroom. For about the next hour, I was doing nothing but puking! I didn't know it was even possible for a person to throw up that much. It finally stopped so I got back in bed. My mom took my temp. (it was around 100, maybe a little higher), gave me some NyQuil, & I went back to sleep. My mom had to work the next day but luckily she came to check on me before she left. I was literally so weak that at this point, I couldn't even lift my head off of my pillow. Plus, I had photophobia like a mother trucker! I remember my mom turning on my bedroom light & I just completely flipped out b/c I was so sensitive to the light. Mom checked my temp. again & by this time, it was getting just a bit too high. (around 104 or 105) I happened to lift my arm above my head & my shirt lifted enough to expose my stomach. I remember my mom's mouth just dropping when she saw it. I had a purple rash all over my body... arms, legs, stomach, butt, you name it! My body was aching SO bad. I remember just praying that she'd leave me alone so I could go back to sleep. Luckily, she didn't! She knew she needed to get me to a Dr. ASAP, but I was so weak I couldn't even lift my head. She knew there was no way she could get me all the way downstairs & into the car, so she called my uncle to come help her. (my stepdad's work was too far away) My uncle came & carried me downstairs, loaded me into the car, & off we drove to see my pediatrician from when I was little. When we got there, my mom ran to grab the door of the office & my uncle carried me in. I remember everyone in the waiting room having an absolute look of horror when they saw me. One of the girls behind the check-in desk ran to get one of the doctors. They immediately rushed me into the back to get me in an exam room & I just remember out of nowhere having 2 or 3 doctors in the room standing over me. Now, I was lucky & had an AMAZING pediatrician when I was little b/c this woman took one look at me & IMMEDIATELY knew what I had. (it's sad to say that it can often be misdiagnosed as the flu in the early stages b/c of the flu like symptoms) She had someone go call 911 & while she waited on the ambulance to get there, she & 2 other doctors started me on IV antibiotics. I was slipping in & out by this point but I do remember, as they were loading me into the back of the ambulance, she grabbed the guy who was driving & told him, "Floor it! I don't think she's going to make it.". (she didn't realize I was still alert enough to hear her) Now, you'd think that would scare me... but you'd be wrong. I was praying that I would die b/c at this point, I was in the worst pain. My entire body literally felt like someone had just taken a baseball bat & gone to town on it. I wouldn't wish this type of pain on anyone! I don't remember anything about arriving at the hospital but according to my mom, I was still awake. She said I was crying & screaming at the top of my lungs for them to just make the pain stop. Unfortunately, my blood pressure had bottomed out, so they couldn't give me any pain medicine. Once my team of doctors checked me out & diagnosed me (Meningococcal Meningitis) they realized the best thing they could do to give me any chance of survival was to put me into a coma. My body needed everything it had to fight to keep me alive & having me sleep through it could only help. I wasn't expected to make it through that night! I shouldn't have made it through! I was raised Catholic & things were so bad that my mom had a priest come & give my Last Rites. You can't receive Last Rites unless you are literally at Heaven's door, knocking as loud as you possibly can! So, I beat the odds & fought through that 1st night. Even after that, I was only given a 20% chance of pulling through. By this point, I had serious Gangrene in both of my legs, the tips of several of my left hand fingers, & every one of my fingers on my right hand. My fingers were so bad that the doctors had to go ahead & amputate them while I was still in a coma. My legs would come once I woke up. I was in a coma for 6 weeks. When I woke up, I had not a clue as to what was going on. I remember seeing my dad & stepdad in my ICU room when I woke up. My dad lives in California so when I saw him, I knew I was in bad shape. I remember being really confused & for some reason, thinking I was in a hospital in Phoenix! (in my defense, I was born there) I remember 1 of my doctors coming in & asking me how old I was & when my birthday was. I went totally blank when he asked me. I remember looking over at my mom & apologizing for not knowing! I noticed that everyone kept making sure my legs were completely covered, as if they didn't want me to see them. When I finally saw them I kind of went into denial mode. Despite the fact that they were both completely black (like when something's so black it has a blue tint to it) below the knee, I didn't really think they'd have to amputate. I was thinking that somehow, as if by magic, they'd come back to life. Unfortunately, that didn't happen. I remember the nurses coming into my room to take me into surgery. I was just thinking, "God, no! This canNOT be happening, not to me!". I didn't really care that I would never walk on my real legs again... but I did care that I was about to lose the most valuable things a dancer has... my legs. As they rolled me back to where the OR was, my mom held my hand & we prayed the Hail Mary the entire way. I don't remember much from the next few weeks b/c they kept me REALLY doped up! (methadone, ativan & dilaudid!!) I'd become a below the knee, bilateral amputee. (I actually have quite a bit of my leg still below the knee. I lost basically from right above the ankle & below.) I was in the hospital for several more weeks. I know I went into the hospital on 6/19/01 & I was still there when 9/11 happened. That's pretty much it as far as how everything happened. I was in & out of the hospital for the next few years b/c of how low my immune system was. I kept getting random infections every few months. I haven't really had to stay over night in a hospital in quite some time (other than having my hip replaced in 2008 but that's an ENTIRELY different story). I do still have what I refer to as "touch up surgeries" once or twice a year but they're usually outpatient. Other than that, there's not much more to tell. I walk on prosthesis, I drive a Jeep, I work, etc.. My life is as "normal" as it can be for a person in my physical condition. So, hopefully this long ass blog will clear things up for some people. It's much easier for me to tell people the details this way. I STRONGLY recommend that every parent get their child vaccinated for Meningococcal. It is extremely deadly & it is VERY rapid. Usually, if you aren't at a hospital & on antibiotics withing 48 hours of contracting the disease, you're going to die. For more information on the disease you can go to http://www.cdc.gov/ & look up "Meningococcal" or "bacterial meningitis" or you can go to http://www.meningitis-angels.org/. I am part of the Meningitis Angels organization. The woman who started it actually lost her only child to the disease. There are a lot of parents in the organization who lost children to it. Pretty much every survivor of the disease is left disabled in some way. It's kind of a "damned if you, damned if don't" type of disease. You'll likely either die or you'll get "lucky" & become disabled! If I had been given a choice in advance, I can honestly say I don't know which one I would've gone with! This lifestyle is not pleasant & it is definitely not for the weak at heart! Aside from being left disabled, some of the things many Meningococcal survivors deal w/ on a daily basis are:  headaches, depression, anxiety, insomnia, arthritis, anger/temper issues, PTSD, vertigo, adrenal insufficiency, lowered immune system, seizures, etc.! And you don't even want to know how many pills I take daily. Let's just say I take way more than my 80 year old Grandmother! Oh, & back to that keg party... the importance of me mentioning that party is that my doctors believe this is where I contracted the disease. It is very common in college aged kids. People can be carriers without actually getting sick from it. I more than likely drank of a carrier that night. If you're ever at a party where everyone's drinking off of those red, plastic Solo cups, BE SURE TO WRITE YOUR NAME ON IT!! Seriously! Also, parents, teach your kids not to drink off of other kids or eat off of other kids and teach your girls not to share lipstick/gloss. These are a few of the main ways it can be spread. It's scary but it's true! I do work w/ a pharmaceutical company that makes a vaccine that prevents Meningococcal. For information go to: http://www.menveo.com/.  If you call you Dr. & ask to get your child immunized & they tell you that b/c it's rare you shouldn't worry with it, 1) Feel free to give them my # so we can have a little chat! 2) Consider finding another Dr.! Doctors who say crap like that are the reason we see more & more cases!

The INFAMOUS "rash"! It's actually blood collecting under the skin from the vessels bursting! (FYI, this obviously isn't me) I'd imagine this person lost part of their arms & more of their legs than I did... if this person was even "lucky" enough to survive!


  1. Oh my gosh, Lindsey. I fall in the category of one of those people who knew something bad had happened, but I didn't know how or exactly what. I know every single person who knows you is glad you survived this horrible event because of what a sweet person you are. I know God has a special plan for you - as is obvious by how you're working to educate people and be an encouragement to those who have had this. Thanks for being open and sharing your story.

  2. You are truly strong and of kind heart to share your story and warn others. Please keep up your efforts to promote awareness and community health. I'll keep you in my prayers and heart. God Bless.

  3. Lindsey, that's very powerful. It felt like I was there through the whole thing -- unfortunately. I appreciate how you tell your story in your own voice, with all the details.

    Your positive attitude is an inspiration. And I love Meningitis Angels!

  4. I'm so sorry you went through that! Thank you for sharing your story. I just made an apt to get 2 of my kids vaccinated. You are in my thoughts and prayers!