My name is Maria Costello.  I’m currently living in Pittsburgh, PA, fighting to stay strong one day at a time as the doctors prepare me for my next surgery that will hopefully save my life.  It is new territory for everyone, a first for the doctors and specialists as well, so everything is experimental as we go.  It won’t be until we are in surgery that we will find out if the wait has been too long and if I need a second four organ transplant of my stomach, pancreas, duodenum and small bowel.  How I got here is an insane story, that even after living myself I find hard to believe, but here I am.  Although I may never understand how something this awful could happen, I hope that sharing it with others will allow something good to come from it… if even one person finds help, if it brings awareness to what can happen, it won’t all seem for nothing.  It would take a novel to tell it all, the ending of which is as unknown to me as it is to you, but hopefully I can briefly bring you up to date here and then you can join me through the rest of my journey as we go.

It started when I was 17, a young, healthy, teenage girl with a pure passion for life… I loved to play, to learn, to experience the world and I lived for the outdoors.  That isn’t to say I lived a sheltered, naive life by any means, and I was no stranger to heartache… my parents brought me up traveling since I was two, often having to leave friends behind, but I always felt that as long as I had my health I had everything. Friends were only a plane ride away and seeing the world with my family was like living a dream. California, New Zealand, Australia, Fiji and India were all places of residence by my 9th birthday, after which we settled down in New Zealand and found ourselves a place that I finally called home!  Already a water baby I got into competitive swimming as my first sport and by age 12 was a national swimmer, marked by my coaches as one to “mold” for future olympic possibilities.  As much as I loved it, I quit when I was 13, for the simple reason that I didn’t want to spend all my teens staring at the bottom of a pool or the line on a ceiling.  Instead I wanted to play multiple sports, especially tennis and basketball, and wanted to be there to celebrate my friends birthdays, to go on weekend camping trips and group ski adventures.  NZ was home to extreme sports and everything was right there in my backyard!  I loved it, until at 15, my family decided to move to Hawaii and for the first time I hated having to leave everyone…my dog, my boyfriend, my teammates and friends… but wanting to make the best of things I told myself I was still young, it wasn’t like I couldn’t come back, and Hawaii quickly became my next adventure and second home.

 

My love for the water immediately led me to a passion for surfing in a place that has some of the most beautiful waters in the world!  It was the summer before my senior year, full of life and full of dreams, living in a world where I cared little for material things… my life was about family, friends, and the gratitude I had every day, waking up thankful for perfect health that allowed me to enjoy all the activities the island provided.  If I wasn’t taking part in sports practice or competition, I was hiking to some gorgeous Hawaiian waterfall or out on the water waiting for that awesome wave that made everything else in the world disappear.  It was a slice of heaven and I was so lucky to be a part of it!  On one of these beautiful sunny days, I was out in one of the best swells of the summer, and the next thing you know I’m feeling my face smashed in by a thick longboard as I was duck diving under a wave.  It is so easy and heartbreaking now, to look back and wish something so little had never happened, that I hadn’t ducked under the wave the way one normally does, instead diving to the bottom of the ocean where I was safe.  It didn’t seem like much at the time though, a few stitches for the hole in my lip, a few more to refit the tooth hanging by its root, and a week in bed waiting for the swelling to come down so I could satisfy the starving growl growing in my tummy.  The very next week I was back in the water… loving every minute… not even a clue…

The accident had done a lot more than simple surface injuries and I started to have problems in my GI throughout my senior year.  A typical young teenager I ignored it all and pushed myself through with what strength and health I had, complete denial that something was wrong and certain whatever had happened would simply go away the same as it had come.  I knew I only had less than a year of school left, my class was graduating back in NZ because of the opposite seasons, my friends already leaving to Europe as we had once planned, and there was no way I was going to let something be wrong, that would stop me from going after the dreams that I’d been waiting for! Something was wrong though, my decline in energy was taking away from the natural high I always got from sports… that buzz and tingle throughout my body that was my passion I lived for!… I was determined though… graduated Scholar Athlete, lettered in four varsity sports, received MVP for paddling, and was completely honored and shocked when named overall Athlete of the Year!  The efforts I put out were no more than I had done all my life, simply because I loved it, but the few times I did go to the doctors they wrote my exhaustion and fatigue off on the fact that I was doing so much.

A year after the accident I couldn’t ignore the problem any longer, my stomach pains were so bad at night that all I could do was lie on my bed in a ball, unable to fight the tears that came with every breath.  I saw the school doctors while a freshman at college, as well as the doctors back home, but they were new to my case now that I was 18.  I tried to catch them up on everything I’d been experiencing since it started, doing my best to continue living my life even after having to leave school during second semester.  What I hoped would be a simple fix became five years of misdiagnosis and the lack of any specialists being consulted, resulted in a lack of tests to determine the problem.  With the high metabolism I had as an athlete, it wasn’t long before I couldn’t keep my weight on anymore.  It dropped slowly, but only because I sacrificed the one love of my life, sports… And although it made up so much of who I was, I realized, I couldn’t afford to burn off more calories if I couldn’t eat as much as I needed to maintain my weight.

As heartbreaking as it was, all that I had experienced growing up taught me to be grateful for the things I still had every day, knowing how much worse it could be.  I would tell myself, “enjoy reading this novel because when they fix this, who knows the next time you will be able to sit back and read!”.  My life became all about eating and trying to keep things moving through, so I could keep on eating and pray I didn’t lose weight.  The devastating part was, as much as I kept going to the doctors and as much as I kept telling them what was happening, no one ever consulted a GI or colorectal specialist.  We were so naive to medicine that we didn’t know these specialists even existed, trusting that my doctors were doing what was best for me.  Even worse was finding out that behind my back I was being stereotyped and characterized as a young lady with an eating disorder, my good grades and success in sports characteristic of a high achiever.  They ignored that it took two years before any weight loss, saying that my parents were “family in denial” and that I was lying about everything.  I felt like I was trapped in a soundproof glass box, banging and screaming for someone to help me, the doctors walking by outside while they treated a girl that looked just like me, but was the opposite in every way.  At one point they even threatened my parents with a court order to lock me away if I didn’t do their eating disorder program, during which I was told I would also be locked away if I didn’t gain two pounds a week by eating 6000 calories a day.  It took three months, seeing the new doctor in the program every week, before he said “something’s not right”, and sent me to a GI doctor.  That appointment immediately led to a colorectal referral, where they did tests that should have been done in the very beginning, but by this time the damage was done and my Colon had to be removed to save it from emergency rupture.  The surgery healed many symptoms, but not the problem that started it all… that problem turned out to be a neurological injury to the communication between the brain and my internal anal sphincter, causing “the inability to evacuate due to a non-responsive sphincter”.  Basically, I was living with a 90% bowel obstruction that was stretching out my organs above, slowing down my intestinal motility and causing toxicity throughout my body.  It kills me every day knowing that a simple 15 min surgery would have fixed the problem and could have been done at any time… it was that easy!… but it’s even more painful knowing that I kept telling the doctors, from day one, “it felt like there was a door that just wouldn’t open”, and that was back when I didn’t even know what a sphincter was.

I was so relieved to think my fight to be heard was finally over after 5 years!  Surely it was just a matter of time, to do the correct tests and schedule whatever was needed to fix the problem, and I would have my entire life ahead of me… unfortunately the original misdiagnosis led specialists to get the chicken and the egg around the wrong way, continuing to diagnose the symptoms rather than the cause.   After losing my colon from it stretching out, the problem continued like a damn in a river, slowing the upper organs down all the way to the stomach.  The diagnosis became “gastroparesis” and severe intestinal dysmotility.  After three more surgeries, the last being an unnecessary removal of my rectum, I found myself moving to Pittsburgh, where they were considered the best in the world in intestinal transplant when all else failed.  My hope was that they would be the ones to find some way to avoid such an extreme measure, but they verified the same thing I’d been told… that the paralysis of the bowel was the reason things would not pass through.  Even after we asked if it were possible for it to be the opposite way around, we were told “no”…  A transplant was the only answer if I wanted to be free of IV feedings (TPN)… if I wanted to eat, drink, and go to the bathroom again, or even be allowed to swim in the ocean!… It was my only option if I wanted the possibility of living my life as I had dreamed, so after 9 yrs of obstruction, we went for it… (And by we, I mean my parents and I, as they have stuck by my side unconditionally since our lives were turned upside down.)

August of 2005 I received a four organ transplant of my stomach, pancreas, duodenum and small bowel.  As much as I hated the idea of it, I was so excited to finally live again and be comfortable in my own skin!  I had always had an immense gratitude for everything in my life, but that was about to be taken to a whole new level. It was daydreaming of the happiness I was going to feel… with every breath I took, every step I walked, every little thing I did, from running and playing with my dog to drinking a glass of water when I was done… that had kept me going all this time.  Ironically the life I grew up with, the one the doctors had blamed for pushing me to do everything to myself, was actually the one I loved so much that it gave me something to stay strong and live for.  Unfortunately, the transplant turned out to be another diagnosis of the symptoms, rather than the injury that caused it all.  What I hoped would be the miracle that set me free, turned out to be the thief that stole my life and took me to a world I could never have known…

Welcome to Transplantland… (the world of multi-visceral/intestinal that is…a category all of its own)…