Hello world! This is me – Kate – a crazy, independent, and compassionate young lady who is living life the best she can with the tools she has!
I was diagnosed with hydrocephalus (water on the brain) and
(missing part of Cerebellum, enlarged 4th ventricle in the brain) at five days old so I guess I’ve kinda been a spoonie my whole life without knowing it. I received my first shunt when I was 4 mo old.
HELL BREAKS LOOSE
My childhood was pretty normal until I turned 13 and started experiencing symptoms of a shunt malfunction, of course I didn’t know because this was my first malfunction. After my revision I developed an infection and had to have my shunt externalized then removed for a period of days. I don’t remember anything during those 5 days but apparently I refused to talk to the RNs, but answered any question asked by my mom or my surgeon…
Anyway after about a month I finally got home weak and tired but happy to be home still on antibiotics but home all the same! Then back in just before Christmas because my shunt migrated out of my ventricles, so I had to have emergency surgery. That surgery was done by at that time a 72 year old surgeon who is still in practice today and last I heard operating!
The rest of my JH and high school years were filled with emergency surgeries most of those where after middle of the night trips to the hospital and large quantities of medication to control my pain; which at many points was bad enough that I was throwing up.
I remember one time when I was about 15 or 16 going to the ER and having a Spinal Tap done to check the pressure in my head. My neurosurgeon at the time said it was so high that I should have been unconscious! Jokes on him because I was awake and apparently had the mouth of a trucker… I don’t remember a thing, but apparently I did have choice words for him.
During this time my mom was slowly dying of an aggressive form of Brain cancer, she passed when I was a sophomore and life changed even more than it had with the shunt stuff…
At 19, my semester at college, I had an emergency brain surgery that left me paralyzed on the left side. Something had gone wrong and the shunt catheter had ended up in the grey matter instead of in my ventricles. I went through weeks of PT to regain movement in my left arm and leg. That all happened in October, by November I was using a walker and by December was walking with a cane in public and unaided at home. I was given the okay to drive again and life continued.
I was still pursuing a degree in nursing, working on fine muscle movements in PT trying to regain what I had lost. Then in 2009 while working a summer job as a CNA/caregiver I began having issues with back pain, I went to see my Neurosurgeon and it was decided that the lumbar shunt I had gotten as a teen should be removed because I was draining too much spinal fluid thus my brain didn’t have enough cushion.
It was decided that the LP shunt had to come out and that I would do better with just my VP shunt. Unfortunately the outpatient surgery turned into several days that ended in me getting two VP shunts. Then I got another infection in my spinal fluid that took forever to diagnose and get rid of. After almost four months the infection was gone and I had spent over a month all together in the hospital. After the end of 2009 my optic nerve had been damaged and my vision impaired for life.
At that point I withdrew from school to figure out how to deal with everything I had been through and was still going through.
There is more to the story but I will share that chapter later, for now here are some take-a-ways from my story.
- Don’t let anyone tell you that you can’t do something.
- Don’t let anyone stand in your way.
- Follow your dreams and don’t give up.
- You may be rerouted a couple times but you will get to where you are meant to be.
Part 2 of this story is coming soon…