My short bio: I wasn't really sure where to do this...but here goes. This is a throwaway account, for obvious reasons.

I am an original survivor of viral meningitis, that was hospitalized 2 days post partum. I also had pre-eclampsia that was undiagnosed until after my delivery. (This is what it states on my discharge paperwork.) I was infected while giving birth to my son.

I was originally discharged after giving birth to my son, and re-admitted 2 days post partum. I had a spinal tap done with a fluoroscopy (machine used to X-ray and guide the needle in - CT guided lumbar punction says on that discharge paperwork), and was diagnosed/admitted immediately. I was hospitalized for several weeks, which I do not remember most of.

I had several seizures before being admitted and after being hospitalized. Naturally, I have some long term memory issues, as a result. My husband is sitting next to me, to help answer questions.

If you have any questions for me, now is the time. (Be warned, I am not a doctor.) I have decided to do this, to help raise awareness of the effects of meningitis.

My Proof: Here is part of my discharge paperwork (I removed identifying information), to prove that I did have it.. I have also been privately approved by the awesome moderators.

Edit: Looks like I am done for now. If anyone had any other questions, feel free to PM me and I will get to them when I can.

I am done with this thread. Thanks for all of the positive support and thought provoking questions.

Comments: 90 • Responses: 40  • Date: 

theskuffy11 karma

It seems they want you to quit smoking. Are you going to ?

MeningitisSurvivor-4 karma

I was originally smoking 1 cigarette a day, and admitted into a very religious-based hospital in Utah.

I still smoke 1 a day, outside, with a smoker's jacket.

contentoverload13 karma

Smoking one a day while pregnant?

MeningitisSurvivor-8 karma

Yes, I was advised to limit my smoking down from 3 a day to 1 a day. My stress was too high, and I was breaking my water slowly over the first few months. (It was a slow trickle) We were worried about the impact of quitting cold turkey on my pregnancy. So, I started to limit. When I was admitted, after birth, I was only smoking 1 a day and eventually quit completely while IN the hospital. 2 and a half years later, I am back to smoking 1 a day and do not intend to smoke more than that (I actually smoke less than that sometimes).

Floorsquare7 karma

Umm.... Who advised you? A Philip Morris doctor from the 50s? That 'stress' thing is bs compared to the dangers of smoking on a developing child. Smoking actually leads to higher stress than not smoking. If a medical professional told you that you should report him/her. As a side note I know it's hard to stop smoking. Do it for your kids. Besides the detriment to your health, it makes you look trashy and unintelligent and it's super expensive.

MeningitisSurvivor9 karma

Two different doctors advised me, after having issues.... I went with what I was being told, for my own health and my unborn child's health...

As per "quitting for my kids", I do not smoke around my children and only smoke MAYBE one a day (if it's a stressful day). It costs me around $6.50 a month (for a pack), tops. Thank you for the lecture.

Floorsquare4 karma

The current literature says that if you're smoking like 40 a day to taper off to avoid risks of seizures otherwise cold turkey is the best. Also that's not the right way to deal with stress. Being a stimulant it leads to more total stress. Go to a spa or something. I've seen too many people die for something so stupid. At least vape if you're that addicted.

MeningitisSurvivor7 karma

Once again, while I was in the hospital...I was not smoking.

Stop lecturing me on my smoking. Seriously. That's not what this thread is about. It's my vice, and I never said I was perfect.

Edit: I am currently smoking (maybe) 1 a day, and not 40 a day. It's a vice. Stop harassing me constantly about this.

Ava681 karma

What is a smoker's jacket? I have never heard of this before.

MeningitisSurvivor5 karma

Jacket made out of special fabric to help reduce the amount of smoke that "clings" to me, it covers all the way down to my knees (it's very long) and my entire top half with long sleeves. I leave it outside, put it on, smoke a bit, take it off (or throw in laundry every other day), go inside. My hair is always pulled up and no one is eating/inhaling my hair. So, no smoke is clinging to me and I'm protecting my kids from any residual effects of 2nd hand smoke. I also wash my hands, with soap, upon coming inside. Twice.

I'm very strict with it, and maybe 1 a day, with all of these precautions is not as bad as everyone is making it seem. (I don't smoke in my car, only in my backyard on the corner of my house - out of sight, during nap time.) I'm not blowing smoke in my kids' faces, neglecting them, or letting it cling to me for them to accidentally lick ( kids don't lick me...)....

I am very anal retentive about it.

[deleted]1 karma


MeningitisSurvivor7 karma

It is my go to stress relief, especially during that time, and I limited it down to 1 a day instead of 3. I have proven I could quit, several times over, and DID after being hospitalized. I only recently started smoking again (after kid #4 was born).

It's my vice, and I don't intend on changing it anytime soon.... I never claimed to be perfect, and this thread is not about my smoking....

I have 4 kids, my stress is high. I'm also in a lot of fucking pain, every day. It's not enjoyable, and how I cope.


Diagnosis of "tobacco abuse disorder" doesn't quite line up with smoking one cigarette a day. But if you actually do have the self control to limit it to one a day now, then kudos!

MeningitisSurvivor5 karma

That line is put in there for ALL tobacco users, no matter how much you smoke. But, hey, since this is a thread about my smoking...let's get into it, shall we? (I could not smoke, at all, while in the hospital. Hardly an addict.)

I limit to one a day, because it's my stress relief. I split my cigarette in half and make it last for 3 trips outside. So, 3 puffs, then go inside, 4+ hrs later (when I get the time) go smoke a bit again, etc.

I'm very busy during my day life, so I don't exactly have a lot of time to sit around smoking. I have the time to do this AMA because it is a day off of work for my husband, usually we'd be running around taking care of our kids.


Oh my bad, I did come off as pretty judgy there (I don't know how it works in America, we rarely even list the pack years on discharge summaries in the UK). It's honestly pretty impressive how disciplined you're being with the smoking, keep it up!

MeningitisSurvivor6 karma

Sorry, totally my fault! This thread has somehow turned into attacking my smoking. I'm not sure why this is the topic, honestly... This should be more about the meningitis and eclampsia, than anything else.

I never claimed to be perfect...that is my vice, and I know it. My husband used to smoke an entire pack a day, and I got him to drop down to 4 cigarettes a day. I'm pretty strict with smoking, and don't want it around my children.

contentoverload3 karma

I'm not attacking I'm just wondering if that was why they put that on the discharge papers. My cousin smoked while she was pregnant. Not something that I would do or endorse, but your body is your body. You and your doctor know whats best for it.

MeningitisSurvivor4 karma

Yeah, I don't endorse it. It was strictly a "my doctor told me so as it was messing with my health", otherwise I would have continued to quit cold turkey.

contentoverload2 karma

Same reason my cousin had to still smoke. Oh, and I had Pre-eclampsia with both my children. The first one spiked my blood pressure so high that I was rushed into a c-section because both the baby and me were close to death. The second one, we just went ahead and had a c-section a few weeks early to avoid the same problem.

MeningitisSurvivor2 karma

Oh jesus....are you and your kidlets okay now?

PeterJennings8 karma

Did the symptoms of the meningitis cover up your symptoms of eclampsia and they couldn't tell? And what kind of special precautions did they take for your delivery?

MeningitisSurvivor9 karma

I gave birth vaginally, with an epidural. The nurse had a cold and coughed on my epidural spot. The cold went to my brain, and inflamed my meninges.

Later, after being admitted, I also had a consultation with the OB department. They claimed because I had protein in my urine, that I also had eclampsia.

I was not checked for eclampsia during my pregnancy, because my blood pressure never raised above normal range. I have naturally low blood pressure, I guess. The hospital itself, had stopped doing protein testing in the urine to save money, and only did it in "danger" cases (over 40, history of it, obese, etc). (Later, for kid #4, my daughter after this, I had to go to my private OB and have her privately test my urine)

So, I had both (at the same time) and no precautions other than the usual during delivery.

Edit: The meningitis came across as bronchitis, at first, with light sensitivity and I couldn't move my neck at all. It was also the cause of the seizures. I was coughing everywhere, and having problems breathing. It was excruciating.

The eclampsia was more of the throwing up, swelling in my legs, random eye floaties, muscle pain, and maybe* caused the seizures. It felt like the flu with some eye floaties.

We originally thought I had bronchitis and the flu. I was turned away the first time I tried to go to the ER. My pediatrician is the one that forced them to admit me. It turned out to be much worse, and my doctor for my 2nd ER visit was amazing.

FazedOut3 karma

Did anything happen to the nurse for making such a terrible mistake? Coming to work sick when you're accountant is one thing, but coming to work sick when you're a nurse exposing patient's spine is quite another.

Also, other than the memory problems, do you have any other lasting effects from the meningitis?

MeningitisSurvivor4 karma

She was put on leave of absence, but otherwise no. She had a cold, not something super serious like ebola. I understand why she came to work, nurses get into a lot of trouble for taking off too many days. (We used to blame her, but now we blame ourselves for not asking for another nurse or asking her to put on a damn mask before coming into the room.)

I do have a lot of lasting effects from the meningitis.

At first, I could not remember anything. I couldn't remember my children's names or birthdays. I still can't remember their birthdays or where we were living (I know the address, not how to drive there). We had lived there for 7 years... I had to learn everything all over again. I could walk and talk, but I had no idea about anything. Not even how to load a dishwasher, which I am known to break appliances now.

I get headaches, really bad headaches. I also am very sensitive to the light. I have constant back pain from where they did the epidural/fluoroscopy. I also become lethargic and unable to eat, randomly.

The symptoms get worse when I am sick. I still take blood pressure medication and medication to stop my seizures. I also have to take medication for some of my other symptoms. I'm basically the same as I was after being. released from the hospital 2 and a half years ago.

(I also have issues typing sometimes, and forget to put in words. My dyslexia is worse now.)

recovering_poopstar2 karma

So in the report it stated that the nurse had coughed directly on to your epidural?

MeningitisSurvivor1 karma

I'm not sure (I didn't check for this...?). I was not sick before I had my son (except with we think eclampsia - we were told I had it before, and just wasn't diagnosed), and a day later my health took a nose dive. Two days later, I was being admitted into the ICU. Doing the math, and the way the hospital reacted afterwards...yeah...gonna go with it what we were told.

Edit: For the record, I felt her cough on me and my husband saw it. We chalked it up to "ew disgusting" at the time. The anesthesiologist was unhappy with her, afterwards.

[deleted]1 karma


MeningitisSurvivor3 karma

No. We were advised by a lawyer that it could take years. We're military and were relocated about a year after this (closer to my husband's home town, where we now live). I'd have to fly back to testify, etc.

I was also told (and I'm not sure how true this is), that even though I have lasting effects...that we might not even get anything from it. So, we'd be wasting all of our time/money trying to fight the very expensive hospital lawyers and might not even receive compensation.

So...we chose not to sue... It really was an accident, I think. She didn't mean to cough on me, she was just sick.

mandarinpeel4 karma

i had pre-eclampsia with my first daughter, lucky mine wasn't that severe. my daughter was a premie and is now doing great! how did your husband handle you being in the hospital with a newborn baby at home? also what were you thinking about while in the hospital? glad you're home and better now! pre-eclampsia is scary stuff!

MeningitisSurvivor9 karma

He cried when my son was born (little bit of tear drops), and when I was admitted he cried even more (LOTS of crying silently). I had never seen him cry before this, not like this, really. He was really worried about me, especially after seeing one of my seizures.

We actually have 4 kids now, 3 at the time this happened. He was on paternal leave, and took care of them at home while I rested in the hospital. We skyped together nightly (I don't remember this), and he visited once while I was secluded in the hospital. I was not allowed visitors until week 3 of my stay.

mandarinpeel3 karma

oh geeze! how did you cope with no visitors?!

MeningitisSurvivor11 karma

I cried a lot. My nurses in the ICU/Recovery room were amazing. My best friend (a dude) played a lot of WoW with me and kept me entertained when my kids were sleeping.

I missed my son the most. I had only been with him a day, and I didn't get to hold him until he was 3 months old. I was a carrier for 3 months, and it was not safe.

Edit: I forgot to mention, we made a game up naming all of the nurses after Pokemon. If you were a terrible nurse, you got a terrible pokemon name.

mandarinpeel2 karma

i didn't get to hold my daughter for the first month due to her prematureness, but i still could visit her. that would have been horrible! and good for your friend keeping you entertained :) thanks for answering my questions and doing an AMA!

MeningitisSurvivor3 karma

My first daughter was in the NICU for 2 weeks, but we could hold her and touch was rough. I can't imagine a month of being able to see your baby and not being able to touch them. I could see mine on skype, but it's completely different than the monkey being right in front of you. That must have been killer.

It was pretty bad, I won't lie. I get asked a lot of questions about what happened, that's why I'm doing the AMA. I'd like to raise awareness about BOTH issues, since I had both. Both were easily avoidable.

thecolonelsghost-11 karma

If you were a terrible nurse, you got a terrible pokemon name.

I think even the most terrible nurse in an ICU is a better human being than a scumbag who smokes while pregnant.

MeningitisSurvivor1 karma

Wow, that's...nice....

Doctor's orders. I wasn't going to go against TWO different doctors telling me NOT to quit cold turkey, when my health/my baby's health was at risk by going against them.

doublek944 karma

You said you smoked one cigarette a day, did you smoke more while pregnant with your previous children? And did your children have any adverse effects because of it? (Sorry if I'm being too blunt. I'm a med student and learned about the effects of smoking on a foetus, and I am curious).

MeningitisSurvivor-5 karma

I have no idea how this turned into a smoking while pregnant debate....

There is a major gap between my children. My oldest is 7 years older than my son (the one I gave birth to during this). We didn't know we were pregnant until about 2 months in, and I was doing a routine OB check-up. I asked while in there to do a blood test for the pregnancy. I was smoking 3 a day when originally becoming pregnant, and advised originally to quit cold turkey. When the stress became too much, and I was breaking my water slowly, I was advised to limit down to 1 a day instead of the cold turkey plan.

My children did not have adverse affects because of the smoking. For kids #1 and #2, I did not smoke. I took up smoking sometime after kid #2 was born, as a stress reliever. (I had been a previous smoker before my first was born)

After kid #3 was born and I was hospitalized with the meningitis/eclampsia, I obviously quit. After kid #4 was born, I took up smoking the 1 cigarette a day (if that).

doublek945 karma

Oh okay. Thanks for your reply. And as for how this turned into a smoking while pregnant debate, it's not surprising. It's really harmful, and you're very lucky that your kids are not affected (so far).

I hope you can quit soon! And you don't deserve nasty pm's or comments as /u/pippilongshanks mentioned.

MeningitisSurvivor2 karma

No problem on the reply. I'm really surprised at it, as that's not what this AMA is about....

I can quit whenever I want to, I choose not to do so and it is my vice.. My husband, is currently attempting to do so. (I mentioned this elsewhere...) The nasty comments are....vile...

My children have never had any adverse affects from mine or my husband smoking. My oldest is 10 now, and zero issues. I'd rather not have people attempt to try to enlighten, shame, or debate with me about once again, not the topic of this AMA.

I'm going to stop responding to any comments regarding smoking now.

[deleted]2 karma


MeningitisSurvivor-1 karma

Oh for god's's a blip in my hospital records, and I answered because I was being nice. I posted partial proof (even though I went through the mods for proof), because I was being nice. Thousands of woman are told to do the same exact fucking thing.

I didn't "continue" after 4 kids. I started AGAIN after kid #4 was born. I smoked during kid #3 under advice of two different doctors, but limited it to 1 a day. Once again, this is 1 (maybe) a day currently over 2.5 years after this.

[deleted]4 karma


MeningitisSurvivor-1 karma

No, I am not sensitive about my smoking. I have had to respond to over 20 different messages about my smoking 1 a day (maybe) while pregnant, on the advise of my two different doctors. I have had people spam me with hate messages about my smoking, including in PMs. I have 2-3 people trolling this thread about my smoking.

My blood pressure is not effected by my smoking, as I monitor it hourly (still).

This thread is not about smoking. It's about meningitis/post partum eclampsia. Maybe you can start to understand why I am getting a little ticked off that it is constantly being derailed?

Edit: I'm actually surprised no one has asked about any of my mess ups after coming home from the hospital. We have a lot of funny stories when I was trying to regain my memory.

[deleted]2 karma


MeningitisSurvivor1 karma

Good point. I guess I shouldn't of added the additional edited proof for people to see. If I were to do something like this again, I will not to make the same error.

I'm getting a lot of nasty comments, too. Something about being a "scumbag", which was lovely.

It was over 2 years ago, and really...was just going off what my doctors were telling me at the time for my own health/my baby's health. I saw two doctors, not one, to get a double diagnosis. So...yeah............

I think they are insane to think they can control someone's vice (my husband is an addict, who has made a lot of strides towards quitting) over the internet.

[deleted]3 karma


MeningitisSurvivor-5 karma

Stop. Just stop. Please. You are harassing me at this point.

I made this AMA to start a dialogue about meningitis and pre-eclampsia, not to have some people harassing me over the internet constantly about my supposed SUPER DUPER ADDICTION TO SMOKING...that doesn't exist.

darkbartlon2 karma

Hi, thanks for making this! I have a few questions:

  1. Do you have any long term sequelae after this? (You mention you don't remember some stuff of your hospitalization, but, besides that is there anything else?)

  2. Do you know what virus was causative of your meningitis?

  3. Where you in the ICU? For how long? How was it? Did you have invasive stuff, like central lines or stuff like that?

  4. Do you know what your treatment was?

  5. Did you have to take any treatment after discharge to avoid passing it to others?

  6. What were the first symptoms and what was the initial diagnosis?

  7. And, finally, maybe you or some other redditor might help with this one: is it standard procedure to do lumbar punctures under CT guide in the US? I'm a med student from Colombia and here LPs are done with no guide except anatomical reference.

Again, thanks for doing this!! And I'm glad you made it through all that and have now a nice family :) :) :)

MeningitisSurvivor1 karma

1 - Yes. I answered this below, so I will copy and paste here.

At first, I could not remember anything. I couldn't remember my children's names or birthdays. I still can't remember their birthdays or where we were living (I know the address, not how to drive there). We had lived there for 7 years... I had to learn everything all over again. I could walk and talk, but I had no idea about anything. Not even how to load a dishwasher, which I am known to break appliances now.

I get headaches, really bad headaches. I also am very sensitive to the light. I have constant back pain from where they did the epidural/fluoroscopy. I also become lethargic and unable to eat, randomly.

The symptoms get worse when I am sick. I still take blood pressure medication and medication to stop my seizures. I also have to take medication for some of my other symptoms. I'm basically the same as I was after being. released from the hospital 2 and a half years ago.

(I also have issues typing sometimes, and forget to put in words. My dyslexia is worse now.)

2- We have no idea what virus/cold caused it. We think she had something like bronchitis, but it could have been anything.

The pre-eclampsia was most likely present for the final month before delivery (that is why I felt like I was in labor and having actual contractions). I just wasn't checked for it, and should have been.

3- I was in the ICU immediately after being admitted, due to the seizures. I had about 27 seizures during my admittance in the ICU. When the seizures stopped, I was moved to "recovery". I believe (and my husband told me this) I was there about 2 weeks. I did not have anything invasive, but I did have a standard IV, antibiotics through IV, and another line for magnesium (I believe, I had to check my records for this). I took heavy narcotics while there, medication for seizures, and medication for blood pressure. My BP was checked hourly. I basically spent my waking hours of skype, and watching TV. I made fun of Justin Bieber a lot, and named all of the nurses after Pokemon (my kids' idea). I don't remember much of it. I kept the lights off, and my door shut (hallway lights were bright).

Side story: After being brought to the recovery, I had a brand new nurse learning the ropes (with an older one) trying to convince me (read: harass me) to express my milk for my son. I was told absolutely to NOT do this by multiple people. I could have killed my son if I had given him my breastmilk during this time. She was eventually taken off my rotation.

4- I had extensive interviews with my doctor prior to discharge, and I have my full medical records to review (over 200 pages worth). See above. My husband was present during my discharge interview, and "kind of" present during the others via Skype (since he couldn't visit). He remembers more about my discharge and actual care then I do, hence he is here helping me answer.

5- Yes, I was told to avoid my children/other for a minimum of 10 days (it says it on the proof I linked). However, that turned to a month when I was still contagious. I took about 12 different medications upon my release, and continue to take 4 daily. I cannot ween myself off of these, or I will have seizures/death/readmittance to the ER. When my family visited me in my bedroom, they would have to wear gloves, masks, and clothes that could be easily washed. No one could touch me, other than my husband. I didn't allow my children to come IN the room until after the month had ended, they stayed in the doorway.

6- First sypmtoms: coughing, unable to breathe, neck pain, couldn't move my neck, eye floaters, losing consciousness (I blacked out a lot), high fever (103+), seizures, swellness, breastmilk would NOT stop flowing (this was bad), breasts were hard as rocks and if you touched them you burned your hand (my husband did this by accident), muscle pains, throwing up, nausea, etc.

7- It is NOT standard procedure to do a lumber puncture with the CT guide. It is standard procedure to do a lumbar puncture, normally, without a guide. I was in so much pain that I couldn't sit still for it, and they couldn't get the needle in. They attempted 4 times to get the needle in, and I can't describe the pain (it was really bad, worse than giving birth). They doped me up, basically put me to sleep, and then took me down to the machine.

No problem on doing this! I'm just trying to answer as fast as I can. I think I answered everything...?

Edit: Words are hard...

darkbartlon0 karma

You did, thanks! I'm sorry about the sequelae. Have these or will these improve over time?

Also, I'm sorry about the tobacco bussiness that's been going against you, I guess some people don't quite grasp the individuality of health. I understand the doctor's orders you got and admire the control you have over your tobacco use

Good wishes from Colombia!

MeningitisSurvivor1 karma

Oh, thanks! The rumor has been for the past 2 and a half years, that it will get better over time. So, far that is not true. Initially, I did get better after that first month of seclusion. My medications started at around 12-14+, and now I only take 3 every few hours. I also still have to check my blood pressure hourly. However, the recovery started to taper off.

We did become riots at parties with my random screw ups during my recovery. My sister also had a blast with it. We have a ton of funny stories about my mess ups. I've been commenting that I'm surprised no one thought to ask. I really thought that'd be the first thing people asked me, you know...about my recovery.

It's eh...about the tobacco stuff going on....people just see "omg smoked while pregnant, let's harass and annoy the crap out of her! rawr! evil person!" Thank you for being understanding, I spoke with two separate doctors before following their orders. That pregnancy was not enjoyable for me, it really wasn't.

I also wound up breaking my hip during it (I was releasing too much of a hormone called relaxin), and dislocated my femur from my hip bone around month 5. It still disclocates every once in a while, and happened again around month 3 for kidlet #4. I'm still handicapped because of tha. I'm in a wheelchair right now, typing this. I have good days and really bad days. Today is a bad day.

So, I still do my mental and physical therapy weekly. (My sister likes to do my mental therapy with me, and mess with my head to test me.) We're mainly taking this as a "lesson learned", and trying to remain positive about the entire experience.

idgelee2 karma

Did they use magnesium to treat the pre-eclampsia for you?

They were worried about it with me because of a blood pressure spike. I was fine, but the bp cuff was stupid and kept being put on so it'd wind up around my elbow, I was angry and annoyed and the nurses during my delivery sucked. I would shake shake shake especially after cervical checks. They never explained the side affects of the magnesium to me either which truly angered me.

MeningitisSurvivor2 karma

Yes, this was the first thing they gave to me and I was on it during my entire stay until my release. I also shook because of the magnesium and was really nauseous because of it. It beat the seizures, though, so we kept it.

Edit: I forgot to say, I was cold because of it. I felt like I was freezing. Supposedly this is a side effect of the drip?

idgelee1 karma

I'd imagine shaking a bit is way better than the seizures. Did you get the stupid pads put on your bed too? I felt so crazy/padded room with those on, and when I was left alone for 12 hours while my son was in observation, and my husband had to be at home taking care of my older daughter.

I can't imagine weeks and weeks of that. I didn't stop sobbing the entire time and that was just a few hours.

MeningitisSurvivor2 karma

I had the pads to protect me from hurting myself during any seizures. There were also tie downs that they would use, so I didn't hurt myself. Don't worry, the tie downs didn't hurt either and I never noticed when they were on.

The shaking was for sure better than the seizures. LOL The magnesium was used for both the eclampsia AND the meningitis.

I silent cried the entire time, and dealt with post partum depression after this. You know where the tears just flow and you can't control them. The nurses tried their best to cheer me up, though (the good ones). My best friend kept me entertained with jokes, news, and random things when my kids/husband couldn't.

My husband was at home taking care of all 3 of our kids, at the time. (We now have 4 kids, because after sex created another one. Whoops. We love our newest addition a ton, though.) He was really stressed and worried, but trying to not scare me. I remember that. I could tell he was worried, because he'd randomly start to cry and have to walk away during our Skype calls. He says (since he's here) that he had to buckle down and take care of the kids. He was worried I wouldn't be coming home, and was preparing for it. Luckily, it didn't come to that.

idgelee1 karma

I'm so very very glad you guys are ok! From one military family to another - I'm glad you are both ok! And everything is well and good!

MeningitisSurvivor3 karma

Thank you, and thank you for your service! Everything is well and good here. We now have 4 beautiful kids, a loving marriage, and a new outlook on life. He is actually retiring right now (we put in the papers already, waiting to be approved), after over 15 years in the service. We put our Utah house (where this happened) on the market last week to sell, and are looking for our "forever home" here in his home town.

jonab122 karma

Hey, hope you are feeling better. Two questions.

  1. In most cases, there is no specific treatment for viral meningitis. Most people who get viral meningitis completely recover on their own within 7 to 10 days. Why did this case hit you really hard? Was it the worst strain of Viral Meningitis?

  2. Were you vaccinated against particular strands of Meningitis in the past?

MeningitisSurvivor1 karma

1 - The specific treatment I received was a heavy dose of antibiotics, pain medication (heavy narcotics), fluids, and a drip of magnesium (this is standard treatment). I'm sure there were other things they did, but my husband was not there for my treatmetn and I only remember portions of it. My exit interview was about 3 hours long, and my paperwork is about 200+ pages from just this stay. I wrote a bit more about my stay elsewhere in this thread.

I'm not sure why mine hit very hard, it might have had something to do with the post partum pre-eclampsia being there, too. I believe it was because my immune system was compromised and it was the way I was infected (directly into my spine), but that is my opinion. I think it had a lot to do with the fact I was immunocompromised (2 days post partum), the most.

2- I am up to date on all vaccinations, and always have been. My kids are also all vaccinated. We get the flu shot every year, etc.

dmastergames1 karma

Do You Like Memes?

MeningitisSurvivor1 karma

Not really...I'm not really active on the internet too much.

biddee1 karma

How much was your hospital bill? And how much did you pay after insurance?

MeningitisSurvivor2 karma

The stay was covered almost 100% through Tricare. (We are military family) I did have to pay out of pocket for the spinal tap. They never attempted to bill the insurance. It was a little over $900.

biddee1 karma

Wow that seems very reasonable considering some of the exorbitant medical bills I've seen here on Reddit.

MeningitisSurvivor1 karma

Well, they should have attempted to bill the insurance. It was technically insurance fraud for them not to do so. My insurance was not happy when they found out we had to pay for it.

vicebreaker1 karma

Hey! fellow meningitis survivor here. Good on you for raising some awareness. I was only 14 when i got sick. Im 33 now so it was quite some time ago.

The lumbar puncture remains to this day one of the worst experiences in my life. And it only ended after an hour and countless attempts by the grace of my mother who could no longer put up with my cries of anguish. And the doctors drew fluid that was inconclusive. No one knows how i contracted it (no other diagnoses at the time) and it seemed like a really severe flu.

Again, i would have died in my sleep in bed were it not for the grace of my mother, who somehow sensing something was wrong, came in and examined me and found my 'rash'. This isn't a true rash, but the result of blood vessels expanding and bursting just underneath the surface of my skin and can in result in quite large burn-like scars.

After all this, being admitted with body temperatures far exceeding lethal, the doctors, i am told still did not believe i had meningitis (the spinal tap yielded a negative result). This time i was only saved by a senior nurse who had experience with the disease and convinced the doctors to give me the appropriate medication in the end. Of course, i was delirious and seizing throughout my first night and couple days ago i only know most details of this story through my mother, after the fact.

As far as long term effects, well many of my childhood memories (long term) were lost. I imagine they wouldn't be so clear these days anyway. I also had almost no short term memory upon my recovery. For example, after my recovery, i would go to ride my bike to a friend's house but then call home, from the nearest payphone, much to my mother's dismay, clueless as to what i had been doing. I also had a small numb spot on my leg which regained sensation after about a year. I was very lucky with my outcome.

Over the years i somehow developed a work around for my short term memory - something i can only describe as telling myself a story of my own recent actions, in reverse.

Between my two freckles there is the faintest of white-ish marks on my forearm. This is the all that remains from my encounter with meningitis.

Now the auto pruned my story for failing to ask a question. Did you have any other long term effects from your disease?

-edit mobile problems

MeningitisSurvivor1 karma

I didn't have the rash, that's why I was released the first time we went to the hospital. They thought it was bronchitis and the flu. When I got worse, and my pediatrician saw me for the well baby check-up...she knew. She called an ambulance for me and had them admit me on the spot. I owe her my life.

The lumbar puncture was the worst! They tried 4+ times to get it in and couldn't. I can't even begin to describe the pain of it.

I responded to this somewhere else, so I will copy and paste it here.

At first, I could not remember anything. I couldn't remember my children's names or birthdays. I still can't remember their birthdays or where we were living (I know the address, not how to drive there). We had lived there for 7 years... I had to learn everything all over again. I could walk and talk, but I had no idea about anything. Not even how to load a dishwasher, which I am known to break appliances now.

I get headaches, really bad headaches. I also am very sensitive to the light. I have constant back pain from where they did the epidural/fluoroscopy. I also become lethargic and unable to eat, randomly.

The symptoms get worse when I am sick. I still take blood pressure medication and medication to stop my seizures. I also have to take medication for some of my other symptoms. I'm basically the same as I was after being. released from the hospital 2 and a half years ago.

(I also have issues typing sometimes, and forget to put in words. My dyslexia is worse now.)

vicebreaker1 karma

I didn't see your reply to a similar question until after i typed my lengthy story, re-submitted it with the question, then had to reformat the dang thing because reddit +mobile =nightmare. Thank you for sharing. I had a similar light sensitivity and the stiffness of the neck. Your long term repercussions must be a burden - i am sorry.

MeningitisSurvivor1 karma

No problem at all! My long term repercussions are a small price to pay for being alive. That's just my opinion, though. It put a brand new perspective on my life and on my marriage.

Edit: I also got some really funny stories out of it all, and we still laugh about some of them today.

bekindyoufucker1 karma

I also had viral meningitis, confirmed through an LP. It sucked so bad and the headache was some kind of pain I NEVER want again!!!

That being said, I was able to go home in a couple of days, as it is generally much less severe than bacterial meningitis (I still was in pain for weeks, just without much they could do). Was your's more severe because of the eclampsia or the fact that you'd given birth, etc?

Did the nurse get her license taken away? (I now see she didn't, but shouldn't she know to wear a mask and not to COUGH on a patient? I wouldn't blame yourself!

I'm glad you made it through and so sorry you had to go through that!

MeningitisSurvivor1 karma

Mine was viral aseptic meningitis. I was so severe that they were running cultures for bacterial constantly, and thinking they would grow in the lab. All of us were thinking bacterial, until the OB confirmed the eclampsia. That's when the pieces started falling into place. (It was like a puzzle...for a while.)

I have a feeling, personal opinion, that it was because of where it was (how fast I was infected and it went to my head), had just given birth (weak immune system), and that I also had eclapmsia at the same time.

Did you wind up having any lasting effects? I'm always curious when I hear of others having this, too. (You are right, that headache...holy shit...and I still get it.)

We originally blamed the nurse for not wearing a mask, but came to grips with the fact that most people are human and make mistakes. We kick ourselves sometimes when we think about how she was coughing and didn't ask her to wear a mask. I really don't know if her license was taken away, I doubt it though. We are human, too, and know we made a mistake.

Thanks for the positive comment, and I'm sorry you had to go through something similar, as well.

Yeraton1 karma

Why is it a throwaway account?

MeningitisSurvivor1 karma

Personal privacy, not to be doxxed. Before I started - I didn't want to drag my kids/family through anything that would turn out really horrific. I've received quite a bit of hate on this thread, and looks like I made the correct decision.

Yeraton1 karma

Thats really sad, you've been through alot and people still treat you like shit, hope life gets better from here on out

MeningitisSurvivor1 karma

It's okay.......some people are just like that. I chose to open myself up to this AMA. In doing so, I opened the door to a lot of hateful jerks (that like to nitpick, be judgemental, and threaten to call CPS) and some really nice people (who went through something similar, and have also suffered). The good always comes with the bad.

This happened about 2.5 years ago, so I've had a lot of time to make the most of my life. I have 4 kids, an awesome husband, and pretty great life. I think if this didn't happen, I'd be a very different person. I wouldn't treasure my kids' life as much as I do now. I'd be still stuck in the mindset of "go go go", constantly rushing around to "do" things...instead of treasuring their memories that we create more.

I hope that makes sense... This has been an interesting experience, for sure.

dotKV1 karma

What are the top three things you wish you learned earlier in your hospital stay?

MeningitisSurvivor2 karma

  • You can ask to replace your nurse, I didn't know this before.
  • Doctor don't know everything, since I was turned away on my first trip to the ER...and later my pediatrician was the one to force them to check me.
  • It's okay to make mistakes, myself/husband/nurse/doctors.

two_off0 karma

Are you ever going to let your son forget what he did to you?

MeningitisSurvivor3 karma

My son...didn't get me sick.... He's a great little guy, though I am obviously biased. I love him very much.