Sunday, April 6, 2014

The Chronicles Of My Narnia Kidneys

warning- if you can't read things about pee or bladders don't waste your time on this post

About 26 years ago, when I was around the age of 4, I got my first bladder infection.  I don't remember it.  My parents tell me I was sick; high fever, lethargic, dehydrated.  The first infection I remember ever having was when I was about 7.  (mind you I had probably 50 infections between the age of 4 and 7)  I had a unicorn night gown on and I had wet the bed.  That never happened.  (well only when there was an infection).... I went in my parents room and my mom gave me a lukewarm  bath, and tried to keep me comfortable until morning, when we made our way into Dr. Bigelow.  I had no idea how much impact those words, "bladder infection, kidneys" would have on my life.

For today, I sit here, alone in our room, drinking a coffee (don't judge- I need the caffeine BAD), with a catheter hanging out of my right side.  This sucks.

Just when I think I've had every single little thing a kidney or bladder can have, something new pops up.

Flashback to when I was a kid- around the age of 14 (after COUNTLESS tests and hospital trips) they concluded there was no valid reason I was getting these infections.  Not one doctor from Foote (the hospital in Jackson) to the Uof M (Ann Arbor hospital) could say WHY I was getting infection after infection after infection.  But back to the age of 14- they kind of stopped.

I remember going into high school, and the frequency of my infections slowed down immensely.  Instead of having an infection once every three weeks or so, it was once every few months.  And I could handle that!  Totally fine.

The bladder and kidneys continued on this infection every 3 month trend until I had Maeve.  Obviously pregnancy messes up EVERYTHING- including ones susceptibility to infections.  I can't remember the exact number of UTI's I had with Maeve... but it was a lot.  Same with Henry, same with Estella.

In the fall of 2011, 6 weeks after Stella was born, I was woken up with the most horrific pain.  I thought I was having another baby... for real- I blogged about it HERE.  It wasn't another baby though, it was a 4mm kidney stone.  And by FARRRRRRRR the worst thing I had ever been through.

Since that first 4mm stone.... they haven't stopped.  In fact, they've formed an army- in both kidneys.  And I battle with them every. frickin. day.

I don't know how many times I was in the ER in 2012 for passing a stone;  maybe 4 or 5 times??   In the summer of 2012, I had 2 surgeries... (and obviously blogged about both, HERE)- the first was just exploratory.... a looksie at my innards to see why I was making kidney stones and why I had a near constant bladder infection.  They found a bleeding spot on my bladder which was deemed "concerning, but not overly." And we'd just keep an eye on it.  HAHA.  (Dear Doctors, find a different way to explain this to patients.  Especially your overly anxious ones).

The next surgery (August, I believe?)  was to blast a stone in my left kidney that had grown to the size of a dime.  I was knocked out for it, and it there wasn't even an incision.  It was crazy- I peed out dust for a day and felt like someone had beat me up, breaking all my ribs and pelvis, but other than that, it worked.  Those stones were gonnnnne.  And I had hopes we were on the way to recovery- meaning never seeing another stone or urologist again.

I think it was less than a month later I passed another stone.  le sigh

Kidney stones are just part of my life, as are infections.  Like you might suffer a migraine out of the blue, I'll pass a stone.  And apparently there is NOTHING to be done.  Or so all the docs in St. Augustine have told me.

So I got an appointment at the Mayo Clinic.  This was HUGE for me.  I mean, I cried on the way up there... I had thoughts of walking through the doors and them knowing exactly what was wrong with me, fixing it with a touch of their hand and then me, skipping out, free as a bird.

It didn't happen quite like that.  At all, really.

I met with my nephrologist (I love him- and I trust him.  I do... but I'm frustrated right now)

I spent the entire day up at the clinic with an itinerary, walking from campus buildings, with my schedule in hand, I felt like I was back in college.  I was pretty stoked going from one machine to the next, because this was it!  This was my hallelujah!  This was the end of the road for me.  There was SO much testing, I couldn't wait to find out what was wrong and how to fix it.

I got a phone call later that night letting me know they had already analyzed my stones and they were calcium based, (most common) and therefore he'd be putting me on a medication that helps me rid calcium of my kidneys.  And obviously, going on a dairy free diet.  Cool..  I was all set.  I called my dad with tears in my eyes, describing the miracles that had occurred and joking about what I could possibly do with myself now that I won't be sitting at a doctors office for a kidney stone once a week.

The 2nd dose of medicine I took (and forgive me... I forgot the name of the medicine) I started to throw up and get an intense stomach pain- like food poisoning.  I called my Mayo nurse and told her;  she said it sounded like I was having a bad reaction to the med and to STOP taking it.  I stopped.  But the puking didn't.  And in January I made my 40000th trip to the ER for fluids and nausea meds.  My stomach was cramping like crazy- I seriously thought I was having appendicitis or some weird bird flu.  No such case.... just a bad reaction to medicine and a (in their terms) "really nasty infection" in my urine, with quite a bit of blood, indicating I'm probably passing a stone.  EVERYTHING that I had just done at Mayo came crashing down.  Looking back on this, I feel like an idiot.  This is not a life altering/crashing event.  Being told you have cancer, or your kid has cancer, those are life altering.  This was just frustration.  And the dang meds they gave me.  (I think I'm the only person in the world who has "frequent flier" on top of their ER chart, yet will not allow dilauded within 10 feet of me.)  Apparently that's the medicine they gave me on that terrible night and between the vomiting, the crazy strong medicine and my emotions, I felt completely insane.

We left the ER later that night and I couldn't even tell my mom and dad the verdict.  You see, this problem I have... its theirs too.  It's also my kids and Ryan's.  When Ashley/Mama gets sick, everyone else has to pick up the slack, dropping their needs, and it kills me.  THE GUILT.  OH the guilt.

My next Mayo appointment was scheduled for May 14th so I had awhile to go... and I knew I'd be in the ER at least a few more times before then.  You see, the thing about kidney stones is this:  They come in all different shapes and sizes.  And sometimes, they're so big, they get stuck and block everything.  Soooooooo.... even though I know what the rip roaring pain is, its kind of important to get some kind of imaging on it asap, because this one time (at band camp)  I sat at home for days with the pain, and ended up being hospitalized for 4 days because the stone had become lodged, and I could not stop puking, or running a fever.  Oh yeah, and I couldn't pee.  At all.  No matter how much water I drink- no pee.  Can you say PAINFUL????????? So yes, that's why I kind of race into the ER when I feel one... to avoid the misery of it getting stuck, ever, ever again.

This past Thursday I was at the beach with a Michigan friend (ANGIE! :D)  Our kids were playing, the weather was perfect- it was just a great day.   And then I felt that familiar twinge- a stab in the back, gutting kind of pain.  At home, I texted Ryan, "kidney stone."

We've been blessed to have BOTH sets of grandparents here this week (my parents live here, but Ryan's were visiting...) this meant a LOT of babysitters!  When Ryan got home he drove me to Baptist (if you haven't heard, I'm kind of done with Flagler- our local ER.  Ever since they got my birth date mixed up with an 80 year old woman's and gave me an unnecessary cat scan, I just can't bring myself to go back.

So yes, Baptist- its like 25 minutes away and a world of difference.  It took forever to get back in the ER, but when I finally did, the doctor was in right away.  At first it sounded like I was being automatically admitted because of my history... which kind of baffled me, but at that point, was in a lot of pain, so I wasn't questioning much.  After a CT scan, and finding NO obstructive stones (just passing ones and ones in my kidney) and all my labs came back, I was released.  They gave me IV antibiotics, some good pain medicine- NOT dilauded and tons of fluids.  I passed a single stone some time in the middle of the night I believe.

And then Friday happened.  I felt crappy; but that was a given- I had a raging UTI, had just passed a kidney stone and by the sounds of it, the doctor, after reading the scan, acted like I would be passing several stones.  So I chalked it all up to that.

Friday night around 11 PM, I tried to go to the bathroom.  I couldn't.  My bladder was totally full, aching, swollen- HUGE- but not a drop would come out.

Ryan was out with his parents that night and I texted him "can you come home soon?  Not feeling good."  Again- huge guilt for having to cut into hist time because my kidneys were misbehaving for the umpteenth time.

He got home and I explained what was going on.  He didn't believe me.  "Ash, only guys get that!  Its when their prostate is blocked or something!  Remember from The Green Mile?"

I honestly had no idea what was going on.  But I told Ryan if couldn't pee by morning I had to go back in.  I woke up several more times that night, each time sitting, nothing.  UNBELIEVABLE.  And the pain.... ohhhhhhhhhhhh my gosh.

Around 10:30 I said "screw this."  Ryan drove me back up to Baptist and I got right in.  Through tears and angry frustration I explained what was happening.  They did ultrasounds, lab work and cathed me.  I can't remember how the measure urine (like what kind of units they use) but it was enough to have several nurses come and "look to see how much urine was in her bladder!"  The doctor came in and talked with me about being admitted or going home with the cath.  My first thought was being admitted would be much easier- I wouldn't have to touch the dang thing... but then I remembered, "oh wait- I've stayed overnight in a hospital 2 weeks in a row now, and it really sucks.  I don't want to go through that again."  So I opted to go home with the cath and follow up in the Mayo ER tomorrow.

The nurse locked it into place on my thigh... the bag sits on my shin.  And overall, its disgusting and uncomfortable and just, plain.... BLAH.

I have been waddling around the house, my kidneys aching SO badly (from Lord knows what??!?)  my pee bag giving me a nice little rash around the plastic area.

The kids ask to look at it all the time.  They think its the best thing in the world.  And the most "KISSCUSTING" (disgusting).  They try and trick each other, "Henry, come here!  I need you!" Maeve will cry out.  Henry will come wandering over and maeve will lift up my pajama pant leg and say "HAHAHAHAHA MAMA'S PEEEEEEEEEEEE!"  and then they'll both run away screaming "KISSCUSTING!"

I have no idea what the Mayo clinic is going to do.... I'm praying I've passed everything I can pass and nothing is blocked or stuck....  PRAYING they take this thing out tomorrow and say something like, "follow up in 6 weeks!"  But I know, in the back of my head, the truth.  This stupid, ridiculous thing is going to be in there for awhile.  The doctor from the ER yesterday guessed a week.  A week.  A week of dumping my pee bag into the toilet.  A week of alcohol wipes and rashes on my leg.  A week of smelling like stale pee.  And I'm sorry- but if you have a cath, you DO smell like stale pee.  I would have to shower every single time I emptied the thing to NOT smell like pee.

So yes, this is where I am in the chronicles of Narnia Kidneys.  I don't THINK its anything super serious.  And that's why I'm being pretty light with it (I want to go visit my parents and splash some water on my dad and then scream and say "OH! My bag is leaking!" HAHAHHA :D)   More or less at this point, its just a big ol pain in the butt.  And I'm frustrated.

They gave me some anti-nausea meds but (and I KID YOU NOT) digize and peppermint in a capsule with coco oil work 100x better.  They gave me percocet for pain, which I AM taking in half doses as needed.  What scares me, is that I can start to feel the percocet wearing off, and the pain that starts to radiate through my back, into my groin....gahhhhhhhhhhhh.  I just keep thinking "how can I do this much longer?"  

But I will, because I have a balloon in my bladder and I can't pull it out.  And I will because I listen to other women's stories that are about 100 times "worse" or harder than mine.  Just reading a single blog post from "Oh So Posh" photography  pulls me out of the "woes of being me" mood.  And I hate even typing this out, because I don't want you to waste energy or time reading the ridiculousness of my complaints.  Take it more as an informative post.... like, if I don't respond to your FB message right away its because I'm literally hung up in bed.

In the meantime, take a quick look through these blogs and pray for these people.  They can use every prayer we have.   Thanks guys!

Oh So Posh (the blog)- Lidia
Sarah Russo- a local friend who's fighting cancer
Amanda Wells- another local friend who just lost her mother suddenly, at a very young age
Linnea Strauss- a friend in Jackson, Michigan who is fighting cancer with everything she has

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