Our friend Katherine is back in Baltimore for her 1 year follow up from her aortic root replacement. She wrote this note last night and graciosly let me use this on this little page. Katherine has a talent for putting words to the experience that is connective tissue disorders. Did that sentence even make since? Well, On with the chlorophyll…
Kath likes cats
We have 2 subjects to cover: the always-popular-but-hopefully-losing-its-luster Cardiology and the less-familiar-but-just-as-ridiculous Neurology.
as most know, my aorta was starting to explode around this time last year but its plans were discovered by Dr. Hal Dietz and annihilated by Dr. Duke Cameron just in time (literally!). one year later and things are looking pretty good for ol’ kath: i feel awesome, people in my life are awesome (both old and new, and there’s lots of new that i wouldn’t have met without this heart-drama), i’ve been able to work for the first time in over 5 years, i’ve gotten some tough financial stuff worked out so that i can go back to wku and finish school, and i’m so excited to get back to the bowling green community in general.
BUT something that has been nagging at me all year is my heart rate is WAY TOO FAST. that is normal after heart surgery, but it generally returns to normal within a few months. so i doubt i’m going to go into pediatric cardiology and genetic medicine tomorrow and hear, “oh whatever, too bad.” so there’s that. there’s also the possibility that they’ll look at my heart and see something else amiss that i can’t even fathom right now. it’s unlikely, but after years of doctors routinely walking through the door with a clipboard and calmly announcing life-changing diagnoses to me, let’s face it, it just really wouldn’t be that weird.
THEN there is this new territory. Neurology. (well, it’s not totally new: cerebral spinal-fluid leak of 2001 and accompanying brain damage; cerebral spine out-pouching and nerve damage of 2007 treated with dangerous narcotics and resulting brain damage, but we never were really able to get solid answers about those ordeals…)
SO NOW i have an aneurysm (a weak spot that is poking out and stretching) in one of my main arteries that supplies my brain with blood RIGHT BELOW IT. the wonderful Dr. Zeiler (pronounced “tyler” with a z) at Johns Hopkins found this little dude last year, but i decided i wasn’t going to really acknowledge it. i just wasn’t emotionally ready i guess. well i’ve spent the last week being chased down digitally by Dr. Zeiler and his colleagues with them all telling me the same thing: take this seriously and you need to have uncomfortable tests that will take all day that you don’t want to so that we can see this aneurysm in great detail because, Katherine, YOU ARE AT RISK OF HAVING A STROKE. ok ok, guys. fine.
tomorrow after cardiology time, i’ll have a big ol’ MRI followed by a spinal angiogram. WHAT IS THAT, KATH?! i have to check in to the hospital and will be put to sleep (not all the way, still breathing on my own, but unconscious) and an extremely skilled technician (i’m not allowed to have this done at another hospital, Dr. Zeiler only trusts his bros) will stick a catheter UP MY FEMORAL ARTERY all the way up to my brain to look at this aneurysm.
HOLD UP KATH, why does this cause a stroke? when blood platelets aren’t going straight through the hallway artery to their destination, they can cause trouble. in my case, they have a little side-closet aneurysm they get stuck in on the way to the brain-classroom. then they get all stuck together and clot. if a clot gets to my brain…STROKE.
back to the angiogram. the test will take 2 hours ending with a technician holding firm pressure on my femoral artery for half an hour to stop it from bleeding. bleh. gross. but then i have to lie flat in the recovery room for how long? oh yeah, that’s right SIX HOURS. so that is kind of unsettling that it’s that serious. all of that waiting is so i don’t bleed out. that is one serious artery. that 6-hour healing time will also be lonely and boring. one of my least favorite combos.
there. there are all of the words. it’s a lot, but you know, it’s impossible for me to under-talk something. i want the information to be out there for you to read if you’d like to understand.
AND KNOW that i’m not afraid of what will happen to me ever. any anxiety i describe i understand to be a natural reaction to jacked-up stuff. i don’t need anyone telling me “stay positive!” i just want to let everyone in on my feelings and reactions in hopes that when you go through something that gets to you, you’ll realize that it’s actually ok. we keep our stuff to ourselves too much in my opinion.
so i have some strong anxieties about being back in the hospital tomorrow, but just know that they don’t have anything to do with lack of Trust. i’m still always excited to see what i’m ALLOWED to go through and i hope reading about some of my junk helps you stay calmer, stronger, and the kind of peaceful that doesn’t have ANYTHING to do with whether or not things are going “well” in your life. so tomorrow is for all you guys who are going through something. while i’m on that stretcher, i’ll be thinking about you. there will be no “BOOHOO THERE’S A TUBE IN MY ARTERY GROSS” it will be:
“Everyone you meet is fighting a hard battle.”
you wanna put ME on YOUR prayer list? well YOU’RE ON MINE
see you tomorrow