Saturday, October 13, 2012

Fungal Meningitis: My Story

With all the news about the contaminated steroids that have been causing many deaths and fungal meningitis infections, I have been thinking often of my experience with fungal meningitis and realizing just how lucky I am to be here today.  This is an illness that kills quickly if it is not caught and treated and I have been feeling very grateful for my life lately.  This is my story...


Around Valentine's Day of 2009, I started to feel funny.  I would get dizzy, have bad headaches and just generally did not feel well.   Noell and I went out for drinks with some friends on Friday of Valentine's weekend and I had this really bad headache that wouldn't go away.  I tried everything over the counter I could think of, tried sleeping it off, tried cool compresses, and nothing helped.  

Saturday we were preparing Noell's house for her family's upcoming visit, I was cleaning the bathroom, and my headache was so bad I had to stop and lay down.  Noell took me to urgent care that afternoon.  The MD thought this could possibly be my first migraine or sinus headache pressure.  So they took an x-ray of my sinuses, which were clear, and the MD sent me home with Vicodin and instructions to go to the ER if it worsened or if I began to vomit.  

I took the Vicodin and was able to sleep for a few hours but then I awoke and the pain was much worse and the vomiting began.  For some reason I was against going to the ER; I think I was feeling so terrible that the thought of getting in a car and riding when I felt so sick and nauseous and then waiting in an uncomfortable waiting room for hours was too much for me to handle.  Noell was really worried and she called my aunt Lisa (who is a nurse practitioner) who said I needed to IMMEDIATELY go to the ER because she suspected I had meningitis.  (See, that's why I'm becoming an NP, they are awesome, diagnosing meningitis over the phone!)  My aunt said if no spinal tap was offered to me, I needed to ask for one. 

Well I think "spinal tap" was all Noell needed to hear and I was in the car heading to the ER.  Waited a little while but not as long as I expected.  I got an IV for fluids and meds (pain, nausea, and antibiotics), blood work, a CT scan, and a spinal tap.  I stayed in the ER over night getting fluids and meds and they sent me home in the morning with more medicine (anti-nausea and pain).  At that point I was feeling pretty good after being hydrated, and having my headache and nausea under control.  Thought I was on the mend.  Little did I know this was just the beginning...

I was back to the ER that evening, I couldn't keep anything down, including the anti-nausea and pain meds, I was back to the same (if not worse) pain than the night before.  That second night in the ER was not quite so speedy.  I believe we waited 3 hours to be seen.  I spent the entire time hanging over the toilet in the bathroom of the waiting room, all by myself because Noell had to sit out in the waiting room to listen for my name.  People would come and go into the bathroom and hear me crying and hurling and ask if I was OK.  Noell tells me that people kept coming out of the bathroom to tell the triage nurse that "someone is really, really sick in the bathroom".  

I was in so much pain that night, the heaving motion from constantly being nauseated made my head hurt so much worse, so when they finally called my name and I was being assessed, I asked  begged to be admitted for pain and nausea control.  So they admitted me, and the following morning, my admitting doctor and an infectious disease MD came and told me that the culture had grown fungus, not bacteria.  I was diagnosed with cryptococcal meningitis


Before the nicer room and the pain control doctor.  

At that point my aunt Lisa was with Noell and I and she asked if wanted my mom to come and I said YES!  My mom was on a plane and was in my hospital room that afternoon.  They explained that I would need to be in the hospital for weeks receiving a strong anti-fungal medicine.  After that, I would need to be on oral anti-fungals for several months.  My headache pain was off the charts so they sent in a pain control doctor to try to help get my pain under control.  I had a PICC (peripherally inserted central catheter) placed, to ease the administration of the anti-fungal and pain meds.  I also had an MRI to look at my brain to get a baseline of the lesion's size and location to compare to later.  


My PICC line

I was moved to a more comfortable room (i.e. not in the outpatient wing where they first put me), and we set up camp for the next three weeks.  My mom stayed with me basically 24/7 and Noell was at the hospital everyday as much as she could be while taking care of both of our houses (we didn't live together then), our pets, all while working full time.  I have no idea how she did it.  My mom slept on the uncomfortable pull out chair/bed for the entire stay and assisted me all day every day with everything.  


From Left behind me: Carol and Mary (Noell's mom and aunt), Sue and Lisa (my mom and aunt)
Front: Noell and I 

The medicine I was on was amphotericin B, and I received it everyday at noon.  It was a bright neon yellow color in an IV bag.   It was the.most.awful.thing.ever.  I was in enough pain with the headaches from the meningitis  but the ampho caused SEVERE nausea and vomiting; I'm talking I threw up 4-5 times a day for a month.  All the heaving and movement and pressure from vomiting just increased my head pain.  It was really miserable.  I was on several other meds throughout the day to combat the nausea and other side effects of the amphotericin.  It was quite a cocktail of drugs to try to achieve and maintain some sort of tolerable routine.  I was on a lot of morphine and consequently had lots of hallucinations that I do not remember but my mom, Noell, and aunt Lisa are more than happy to tell me about now :)  Apparently I was quite entertaining on morphine. 


Eating....I was hungry, just couldn't keep anything down.

Noell brought Kain up to visit me a few times.  I rode in a wheelchair to a bench
right outside the door to the hospital.
He wanted to sit on my lap. I love that dog.  

Looking back the hospital time seems like two sides of the same coin.  What I mean is this:  I feel that it was all mashed together as one long day because the same things happened every day and it is hard for me to distinguish one day from another; and at the same time, it seems like I was in the hospital for so long, months instead of weeks.  It's hard to explain.  

Upon getting released from the hospital I was still pretty sick for the first few weeks at home but I was SO happy to be home.  I had lost 20 pounds in the hospital and still continued to lose weight for a week or so at home.  I was put on Diflucan and today, 3 years later, I am still taking Diflucan and a pretty high dose.  I get my labs done every 3-6 months and will continue to do that until my blood shows no detectable signs of cryptcococcus.  

At that point I will be able to stop the Diflucan and space my blood work to every 6 months to a year.  I will have to be follow this throughout my life though, as fungus is not like bacteria that can be eliminated form your body.  Now that I have been infected, the fungus just lays in wait and can decide to try to grow again at any time (typically in times of severe immune compromise).  I was so very lucky that the MD in the ER was checking for fungus, or else I could have been mis-diagnosed and this could have been fatal.  I went back toward the end of my hospital stay to thank him for his care.  

I have had some lasting effects from my experience which include trouble with my balance, memory problems, and headaches.  Once I had gotten my strength back I began to go running for short distances and I would trip and fall or run into things really often.  I became so used to it that I had perfected my fall to be a "fall and roll and get back up" without missing a beat.  Also, my memory is really spotty.  I recently connected with another blogger, (Katie) who had meningitis about the same time I did (although she had bacterial), and she described our memory problems perfectly.  She said " I feel like all this stuff is locked in cabinets that I don't have the keys to anymore, so it's there, just not available".  

So that is my story.  Whew.  My thoughts are with all the families that are travelling through this right now.  

Onto the most asked questions I receive when people hear about this:

Everyone's first question: "How did you get it?"   
  • Your guess is as good as mine.  Cryptococcus is found in soil everywhere, people are exposed to it all time.  Typically, fungal meningitis affects people with compromised immune systems (HIV, cancer, etc).  There is no explanation why my body didn't fight it off and no rhyme or reason to why it affected me versus any other health person.  

Next question everyone asks: " Is it (or was it) contagious?" or "Can you pass it to a baby?"
  •  Nope and nope.  Fungal meningitis is not contagious and cannot be passed down from mother to child. 

*These pictures are all taken of printed pictures, hence the terrible quality; all that I have are prints from what my mom took, no digital copies.  


10 comments:

  1. I remember your Mom sending us weekly emails about what was going on. It was scary, though nothing compared to what you were going through. Happy that you pulled through and it wasn't fatal.

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    1. Thanks mags, the balance thing really messed with my running...once i actually ran into a street sign! so embarrassing...thankfully my balance has improved some since then :)

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  2. Thanks for sharing your story here, I think a lot of people want to know what it's like to live through something as wicked as that. (And with the recent news on the topic, this is incredibly timely!)

    Glad you reached out, and glad to be getting to know you. :)

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    1. Ditto to you for sharing your story :) So nice to be "meningitis friends".

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  3. I'm so glad you told your story from your point of view. It felt like time stood still for us then. We would anxiously wait for your Mom's email updates. It was so hard to hear about your suffering when we lived so far away from you. It was a total blessing that your Mom and Noell were there to take care of you and everything else so you could concentrate on healing. I thank God every day for my family and friends! We love you Meaghan!! Aunt Katy

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    1. Thank you Aunt Katy. It was amazing how much support i got from everyone, even people that don't live in SD. I got cards, calls, and messages. Can't wait to see you soon!

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  4. Wow! What a start to the blog! I learned some things too :)

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  5. Such a crazy thing; it feels like yesterday and 10 years ago all at once. I have a strong, brave sister, huh? :)

    Love love.

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    1. thanks kait! it totally feels like 10 years ago and also yesterday. I think about my life in divided terms now..."before i got sick" "after i got sick". so weird

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