The day I learned what try meant…

       I had been in the ICU over a month at this point….all my surgeries except one had been completed, at this point I could not walk on my own anymore, I had already undergone my trach surgery that I wasn’t aware of when it happened…just went to sleep how I thought was normal, and dad and Sean got the call in the middle of the night that unless they trached me I would not live through the night.

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 For the record my lungs are jerks!

bad lungs

So trach meant hooked up to a ventilator with large blue tubes strapped around the hole in my neck breathing for me.  As an example it took approximately 45 minutes for me to use the restroom (#2 for those counting since I had a catheter).  I would press my nurses button, they’d appear anywhere from 5-15 minutes later, it would take me 20 minutes to get unhooked enough to sit up, 2 nurses to help lift me up and onto the bedside toilet, then another 10 minutes after “going” for the nurses to lift me up, clean me up, then about 15 to get back into bed which was the worst part.  In order to have me scooted up to where I was sitting up properly (because I couldn’t breathe even with the ventilator when I was laying down) the nurses would basically have me hold my breath while I was laying flat then they would scoot me with the sheets to the top of the bed, then slowly raise up the back of the bed.

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FYI….the most terrifying 10 minutes ever not being able to breathe on your own.

 

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And to make matters worse, my hands were shaking so badly from my body adjusting to my Prograf medicine and the only way I could communicate was by writing on a tablet, and hope someone understood it.    One night in particular, I was getting very very discouraged by all of this.  Every day things seemed to slow down even more and the thought of getting out of ICU kept feeling like it was slipping further and further away.  It was this night I wrote to my nurse, “I don’t think I’m going to make it” on my tablet.  The gravity of even reading it back after writing it down still hits me hard, because for the first time in my life I actually truly believed it.  So one of the many reasons why I love the liver ICU nurses so much is because that nurse at 2 am called and woke up Sean and told him what I had written.  30 minutes later Sean burst through my door half determined half mad at me for attempting to give up. 

 

oh yes you can

     He sat there and talked to me for a long time and gave me the best piece of advice I’ve ever gotten, and it’s so very simple.  Just do one thing a day.  Even if it is just PT coming around and standing you up from your bed.  And for some reason that stuck in my head the rest of my stay in the hospital and I made it into sort of a game.  My main doctor, Dr. Mobely even said looking back that “something changed for you that week and you’re improvement just shot straight up.”  Granted some days my PT “one thing a day” was just walking 2 steps out of my door but then I worked up to 2 laps around the nurses station, and each day i achieved one new thing.

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Friday (F)Philosophy….ish….that phrase just makes me think of filo dough…so let’s just wrap my brain in filo dough (bake at 375 for 25 min) for this one as I hash out where to go next…

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Today  I am overwhelmed and in awe of those greater than I…which for this perfect illustration for today is via @smplaw (Stephanie Law…she’s a badass).  And today’s a not so illustrated by writter so brace yourselves….

   I find myself at a bit of a directional quandary – our Charli-bird left this morning from being here all summer, and I already miss that kiddo (Mia, you’re life is so, so, so blessed because you get her every day, her every smile, her every frown when she doesn’t understand something and looks at you like you’re crazy then cocks her eyes up to the side…. 🙂

Anywho, more detail on my ICU days and subsequent thoughts that went through my head during the many hours I was alone, even with people visiting a lot during the first month.  There always comes time when it is just you, your thoughts, and this dimly lit room with the door shut and alarms going off everywhere from other rooms and sometimes your own room.  Over the 52 days, I had several “wall-mates” ….all much older than I…who were very vocal, some with family, some without and just confused….it breaks your heart.  Or maybe I’m just crazy that I was more concerned with them than my own well-being…. ask my nurses…I generally buzzed my nurses button for wondering about their well-being than my own.

And I don’t say that to pat myself on the back, I honestly believe anyone in my situation would have done exactly the same…if I’m wrong, don’t tell me…I’m still among the dwindling few that believes in humanities innate goodness…I’d rather live in my idealistic philosophical world where deep down when push comes to shove we all truly love each other. 

        I can truly say I have never felt so alone in those times, even as a believer in God (a higher power if you will).  Sometimes God, or whomever you believe in, lets you grin and bear it.  Or I could go on from Becky’s (on facebooks) request regarding my near death experiences which happened as I said 3 times…. the good, the bad, the endless hallucinations of mom sitting in my room with me, and the equally endless times when I could have sworn she was right there but then blinked and she was gone and I was alone and my heart sunk with reality she never was or ever really physically be there.  Imagining how much mom would have been there for me every hour, even though she would be furious at me for getting in this predicament (she would have been so angry, but wouldn’t have missed a beat for being there for every moment)…she never would have left my side.  And I’d like to think even where she is now, she never did and still hasn’t.

       Or keep expounding on the good fleeting amazing moments that I still find, even in last week’s hospital stay with the world’s most amazing and courageous nurse named Gwen, who I will tell you later of, but has endured stage 4 breast cancer and a mastectomy that has somehow metastasized/or affected without possible repair to her heart but refuses to not come into work when she is able to help other.  Spoiler alert – she’s still planning a trip to Paris that she’s never been able to do but hopefully if she’s healthy this year enough seh’s going for it.  All that to say, everyone on the transplant floors (4 and 10 and Dunn Tower) are so so amazing and unlike anything short of angelic.  So I went to where I generally go when my thoughts run stale and spaghetti bowl ish….to the almighty quote generator online.

   Lol, don’t, laugh, I guarantee a good amount of writers when at cross roads, kick on their “writing play list” and start googling for inspiration…which is nothing to be ashamed of for 2 reasons in my opinion.  1.  There are so many more eloquent and life changing writers than ourselves already out there just ready for us to lean on their proverbial tree, gather some shade and collect our thoughts and ultimately know which direction to choose.  And 2.  Writing isn’t exactly a new art…neither is the art of suffering.  Many of us have done both with more grace than any of one could ever muster and in the end we just hope that someone reads our story and understands the madness, grace and utter humility that can be found in it. 

“And men said that the blood of the stars flowed in her veins”

― C.S. Lewis

“My own plans are made. While I can, I sail east in the Dawn Treader. When she fails me, I paddle east in my coracle. When she sinks, I shall swim east with my four paws. And when I can swim no longer, if I have not reached Aslan’s country, or shot over the edge of the world into some vast cataract, I shall sink with my nose to the sunrise.”

― C.S. LewisThe Voyage of the Dawn Treader

To put it another way, pain is God’s megaphone to rouse a deaf world. Why must it be pain? Why can’t he rouse us more gently, with violins or laughter? Because the dream from which we must be wakened, is the dream that all is well.”

― William NicholsonShadowlands

“Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal.”

― C.S. LewisThe Four Loves

 

Ah…today, i think…

(Today’s Fine Print: Tomorrow we will resume our regularly scheduled posts about actually in hospital experiences, particularly ones I’ve been asked about, but I thought this was appropriate for today.)

Some days are serene now….don’t be fooled by some of my more serious and sad posts.  I do manage to allow true happiness seep into the cracks of my existence.  The calmness in the morning with my coffee…looking out into the new garden I am working on outside…

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…seeing the picture of my mom and dad on a sled that sits on my desk in my home office.  This definitely isn’t how I envisioned my life going and subsequently ending eventually, although I always had a sneaking suspicion I would never fit the proverbial mold

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Although in my opinion that mold is over rated, for some – i mean this statement in every ounce of respect, but those of us were never meant to follow that…and it doesn’t make you or me wrong.  If you’re happy in it, then more power to you, from what I’ve heard it’s amazing and fulfilling and everything you wanted your adulthood to be…it’s just not for me, and sometimes others… 

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Sometimes I think my life would have gone very different if I had chosen that path…husband, children…but looking back only makes you run into stuff and bump your head.  Though, today I am having one of those happy calm days…this version of my life is ok, and that is more than most get to say.

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 I’m sure something will come along shortly and attempt to derail it (because that always happens haha) BUT I’ll get to chose whether to fan the flames or dance around them

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Only time will tell, but I will say that getting back into this type of routine, even when it comes with “domestic disputes” over stupid shit like what type of noodles to cook with the chicken for dinner, it’s nice…I will take that any day ever after this last year.  It makes me forget all of the bad, all my terrible scars, all the loss of what I once thought was important and I embrace the weird, wild and wonderful that is what LIFE was meant to be.

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So to end this post…which started happy I’ll admit..but ends serious which still doesn’t mean it’s not happy.  Life is at it’s most beautiful when it’s dirty, complicated, fought for, and keeps you up at night.  That’s when you know you are living for something worthwhile…and i hope subsequent love peaks in throughout that process.

The day I met a Charlie-bird

(Proverbial Fine Print: if you haven’t noticed these stories aren’t in any particular order time line wise 🙂

        So the day I met Charlie (Sean’s daughter)…the most awesome kiddo on the planet, and trust me she loves planets, and basically anything sciency.  In her words she was “worried…nervous…and a little creeped out.”

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      She had never been in a hospital before except the time she spiked a huge temperature and had to have an IV herself.  (“that hurt alot” – she says)  She hid behind my “chair-toilet” because her legs were tired and she didn’t know what to do.  (She’s standing by me re-capping this).  Although in hindsight, probably a good thing she didn’t sit on it.  I plan on doing a “how to hospital poop” post in the future in which I will expand upon the wonders and delightful alternative choices as to how and where to poop…but i digress..  

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Our first interaction was the fact that my Prograf (anti-rejection medicine) made me shake “like I was shaking maracas”  (again her words rofl) and I kept dropping the remote to my TV and nurses station so she crept tepidly over to hand it to me a few time.

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So this was two days before I was to be released for good (December 30th to be exact)  and I had accumulated a lot of crap being in the hospital that amount of time.  So Sean told Charlie to go get a trolley for my stuff from the lobby, which he was kidding of course and went with her to help.  Charlie appeared moments later on top of said trolley like she had just ridden Splash Mountain into my room at mach 10 (think I used that term correctly…).  Either way…It. Was. Amazing.

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We packed everything up, with my dad helping with some stuff.  Unfortunately, I had to stay an extra day before I went home.  I had asked Sean and Charlie to bring up the exact outfit I went into the hospital in, not knowing really how much weight I had lost during those months (60 lbs for anyone counting)…so it was apparently was 10 times too big, but I pulled it off (thank God for wheelchairs).  Being fashionable wasn’t exactly my top priority at the time…  

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Then came the ride home…it was so CRAZY…I felt like someone that had been in jail or something, seeing the outside for the first time…the sky, the grass, other cars….other people, hearing birds and normal people doing people things sounds.  It baffled me.  But was wonderful…

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So to wrap up this post, and thus immortalizing meeting one of the truely brave and amazing young ladies I will ever have the pleasure of meeting and am thankful every day I get to interact with her…here is the real Charlie-bird playing with Frank the pug on my wheelchair I had to use for a while when I got home before I could walk on my own obviously…She’s a pretty great kid who now says “we’re like best-friends”…can’t go wrong with that!

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The moment everything stopped.

The moment when everything stopped (& please don’t get offended by this but I’m sure some will, and for that I’m sorry). 

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I was already in ICU and had just found out that I definitely needed a liver transplant because my liver was definitely dead, and my main doctor (Dr. Mobley) responded to a question posed by Sean, “how long is this process when she will get a liver”…and the doctor responded, “oh she’ll have one in a week”.  That is a moment I will never forget…I think until then I had figured that it all wasn’t that serious, and I’d get reprimanded for drinking  a lot and sent on my way.  I remember looking at Sean and trying my best not to cry because I was so frightened.  I refused to cry in front of Sean or my Dad because I wanted them to think I was strong for them and it was ok.  

See at this point all of this information about transplants was so foreign to me.  I had no idea what wait-lists were, or status 1’s or a MELD score.  I got the joy of being a status 1 priority level…MELD (Model of End-Stage Liver Disease) score of over 40.  I had days to live.  That’s when shit got real.  

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This part doesn’t actually fit in well right here, but writing this made me remember another “oh crap” moment.  Lori Smith Johnson was visiting me and I was hooked up to everything known to man that monitored my breathing, oxygen level, heart rate, etc…and an alarm went off.  At first we thought it was my pulse elevating because it had been doing that a lot lately, but a nurse ran in and it turned out to be my oxygen level.  And I’ll never forget Lori half laughing, half serious yelling at me, “BREATHE LEAH BREATHE”…

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But I digress…I’ve had surgeries before, but never one so serious where I actually wondered if I would wake up after.  A liver transplant is one of the most strenuous surgeries on your heart there is.  There are so many many tests they run on you every day for a week straight just to make sure your body can even handle the surgery.  Fortunately my kidneys decided they wanted to cooperate – though they still only function between 30-40% on a daily basis and that won’t improve.  It was about this time that my visitors got scarce.  My father came to visit me on the dot at 5 pm everyday with Sean.  At first, Dad couldn’t even bring himself to come in the door because I looked so bad and was hooked up to so many things, but he eventually did.  However, the occasional alarm or dialysis bell would send him running.  And Sean quickly discovered how truly awful trying to sleep in the chairs in the ICU room was.   

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I wish I could have seen what it looked like from everyone else’s point of view…especially Dad’s or understand at the time that people couldn’t bring themselves to see me how I was or were worried they’d get me sicker since I didn’t have an immune system…but the harsh reality was….no one came except my dad and Sean in the end when things got hard.  And I’m not saying this to point out people or be mean….I’m expressing it in the sense that literally some things are just too hard to bring yourself to see first hand.  The old adage that if you don’t see it – it didn’t happen.  But if that was it….I had Sean and Dad. 

And the wonderful moral of the story is…that was more than enough between them for their love and support for me. dad sean

 

 

A homeless man brings me a santa claus in ICU

        I love decorating for Christmas.  I love the lights, all the fun tinsel and toys around the house and how somehow everything smells like cinnamon.  When we moved to our new house in Houston from Galveston even though it was January, all I could talk about was where the Christmas decorations were going to go, the tree, the stockings etc that next year. 

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However, come Fall I was already in the hospital and knew I was not going to be out before Christmas.  It made me sad that I would not even get to see one house lit up with lights, or one tree…just the stale small ICU room I called home with a million wires and tubes running in and out of me.

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So one morning, I had been woken up already for morning medications and I look out the window in my room into the hallway and I see a man with shoulder length curly red hair, a full red beard, wearing a woman’s black terry cloth bathrobe and carrying a 3 foot tall plug in light up Santa Clause…this of course was Sean, my best friend and partner in life (more on his awesomeness and strength through this ordeal in later posts 🙂 )

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         He had taken my robe home to wash it and thought it would cheer me up to have my great grandmothers light up Santa Claus plugged in in my room.  Granted my room in ICU was tiny so this Santa got the honor of sitting up on the counter by the sink for everyone to see as they passed my room and stayed plugged in and lit up until the day I was discharged.  To explain his appearance – He and our friend KS had bought me a fluffy bathrobe to help me feel more comfortable, but it needed to be washed so he had taken it home to wash it.  Around 5am he decided the best way to get up to the hospital with the now clean robe and the surprise Santa Claus was to ride the Metro wearing said robe and carrying Santa like he was a person.  He got many stares on the bus, especially from one child that was on his way to school that kept staring at him and Santa giggling…apparently the child’s father did not see the humor of the situation…weirdo  

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Anyways, so the Santa sat plugged in on my counter for the rest of my stay in the hospital like a giant comforting nightlight.  I had people coming in taking pictures of it and would always laugh and smile at it when they passed.  It was one of the most meaningful things he could have done for me during the entire ordeal of being sick and in ICU.  

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Also here is a real picture of said Santa Claus and the happiness it brought me in my depressingly stale room I was confined too…told ya’ll i was puffy 🙂 this was taken between surgeries 4 and 5 I believe…but I was already on the ventilator to breath for me (pesky blue tubes connected to the hole in my neck)

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Self-medication and Survivors Guilt

So a little background on the WHY I blew up like a yellow highlighter ….puffy me

I used to indulge in adult beverages a lot…I mean alot alot.  And now with my shiny new liver I can’t anymore..

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Which is fine, but at the same time feels like a cosmic rip off…Most people partake in adult beverages to buffer reality, either in a personal therapy way or in a social awkwardness buffer because they don’t know how to “person”…

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Dealing with the aftermath of a liver transplant, which a doctor on my transplant team compares the experience as having PTSD, is a little rocky to navigate without any “help”.  They give us transplantees anti-depressants and medicine to help us sleep, but in our anti-opiate and benzo world that is pretty much it.  So we get the joy of navigating coming back to life (literally), while adjusting to 20-30 different medicines that keep us alive and our transplant psychiatrist fiddling with trying to find the right dose and type of psych meds that keep us off the proverbial ledge. 

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And heaven forbid a transplantee mentioning this to anyone for several reasons….1. most transplant doctors are heavy anti-alcohol/addict people, who threaten to not transplant you or re-transplant you if you partake again (most of us are looking at a re-transplant in 5 years when the new liver wears out) 2. The guilt your loved ones and friends add on to your already mile high pile of shit and grief because they think you are selfish to want an escape or need an escape, becs we are expected to be bouncing off the walls feeling #blessed that we had a second chance on life, but that second chance came at the cost of someone else’s life.

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I’ll let ya’ll in on a little secret…that’s not how it works. 

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When you feel bored, google “survivors guilt”….it’s a bitch, it’s real and you’ll be hard pressed to find anyone that understands it unless they’ve been through it.

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So all that to say, I guess the moral of the story is this process has so many layers it puts an onion to shame.  And I’ll end this post with two quotes I found online from no one in particular…

1. Telling someone with a broken heart to “get over it”,     “quit living in the past” or “snap out of it” is like telling a blind person to “just look harder”

      and this one relates to my first post from yesterday…

2. I say “I’m fine, thanks” because I simply cannot describe the pain