Thank you so very much for participating in the Liver Life Walk to raise funds and awareness for the American Liver Foundation again this year. On behalf of myself, a former liver disease patient, and the 30 million people who are currently living with liver disease, thank you for your support. There are over 100 types of liver disease that can affect men, women and children of all ages, so your support has contributed greatly in efforts to research, educate, and find ways to cure the disease.
It seemed like such a wonderful day! It means the world to me that you ladies went, wore my t-shirts, and represented Team Just Say Mo at the walk in my absence. I wish I could have been there, but with you ladies going it made me so incredibly happy! This year we raised a whooping $4,655 for the ALF, that is by far the most we’ve ever raised in the four times we’ve supported the walk!! Thank you to all of those that have supported me and my team over the years, I will never be able to thank you enough!
Yesterday, September 29, 2013 I was one of two Liver Life Champions representing the American Liver Foundation at the 2013 Liver Life Walk of Fairfield County along with little Charlee and her Angels 🙂
I attended this event last year just a few short months after being discharged from Yale for a miraculous liver transplant and two incredible, life-saving brain surgeries to remove a rare, and fatal abscess consisting of a highly aggressive fungal infection called invasive aspergellus.
Below, I gave this speech to hundreds of family, friends, and supporters in efforts to raise awareness, educate, and assist the 30 million Americans currently living with liver disease in one way or another.
The experience I had at this year’s Liver Life Walk was one of the best days of my life. I felt so comfortable sharing my story to the crowd. It wasn’t just any crowd though; these were people who have been affected directly or indirectly by liver disease.
I will say no more, you can hear how it went in the above video. Thank each and everyone of you for your continued support of Team Just Say Mo, the Liver Life Walk, the American Liver Foundation, and Donate Life.
I have been asked to be the 2013 Liver Life Champion (Fairfield County) this year! The Liver Life Walk will be held on September 29th, in Stamford, CT and I will be speaking at it this year!
I am so honored to have this opportunity to represent the American Liver Foundation and to publicly speak about my journey. Thank you for all who have followed me and supported me, I wouldn’t have the courage to be doing this without your continued support!
If you are in the area I would love for you to attend the event on September 29th, 2013 at 100 Washington Blvd, Stamford, CT 06902. I have designed Just Say Mo T-shirts for the event and I will be letting you know soon about purchasing those.
Well, I haven’t posted a blog in awhile, but in one way that is a good thing for me. It is good because I have been very busy this past month, and the way things are looking, I am going to be pretty busy for a while it seems. I am the kind of person I have do something all of the time; keep moving, keep going. If there is nothing for me to do, I find something to occupy my time. When I am home alone, with no mode of transportation, I discover and create ways to keep myself busy. I put effort into making each moment productive, in a way that can help me better myself physically and/or mentally.
Recently, I have been a huge fan of the work-outs provided on “On Demand” and I will do 2-5 of those workouts throughout the day (depending on how short/long they are). Killer Core is one of my favorites right now. I tried out one of the cardio dances, and let’s just say I will probably not be letting anyone see how ridiculous I must look doing that one! I’ve also been building a website for my aunt’s new organization that we are in the midst of establishing (I can’t divulge much about that now but stayed tuned!). My aunt is very excited about the organization and her big plans, and I am very excited to be her right-hand (wo)man and utilize my writing and computer skills. We both foresee very big things coming, and I am anxious to see how things pan-out.
The holidays are always a busy time for everyone, but through the holidays and shortly after I had several friends come to visit me, I went on a day-trip to Massachusetts for my cousin’s cheerleading competition, and then I spent two weeks in Florida visiting some of my family. Just like that, January came, and now it is just about gone. It was a great month, but I also have so much to look forward to and keep me busy in the next few months. A productive Mo is a happy Mo.
Four of my really good friends, (whom I’ve met in college at Furman), all currently live within a rather short distance of Boston (just a few hours from me), so we are having a re-union this weekend in Boston, which I am also very excited for! Besides my family, there is not one thing I love more in the world than my friends. Those whom I consider my closest friends, I will have their back no matter what, and I hope they would do the same for me. One of the best characteristics I consider of myself and my fellow Italian family is loyalty. So if I deem you to be in the “MO-fia” as I call it, you’ll always be in good hands; but if you’re not, better start saying your prayers ; )
Speaking of prayers, the following week after traveling to Boston, I have Bon Jovi and Taylor Swift concerts to look forward to. I can’t wait to be Livin’ on a Prayer at Bon Jovi, TSwiftski is one of favorites. We have a CD my aunt plays in the car, and when Livin’ on a Prayer comes on we crank the music up and we sing that song as loud (and it’s horrible) as we can. My aunt has told me that when she hears it she thinks of me, and Yale, and how I was “livin’ on a prayer”.
Besides the concerts, I will be doing some travelling, and during which I will get to spend a couple of visits back in Greenville, SC (where I was living when I got ill). While many of my close friends are dispersed around the country, some of my closet friends still reside in Greenville, so I am thrilled to be able to go and see them. These won’t be your normal visits; we’re talking one of my best friend’s bachellorette parties in Charleston, and her wedding in Greenville, SC this spring with a group of us who haven’t all been together in the same place, at the same time, since probably college….I am already anticipating stomach pain from laughing so hard. I can’t wait to be singing karaoke, and fist pumping, and “livin’ on a prayer” with some of my best friends. Those are some of the best times I’ve had.
When I get excited about things that are going to happen, I often times begin reflecting on the good ole’ times, and can’t wait to have new good times. One of our favorite karaoke songs, and probably one of the most popular of all-time is of course, Bon Jovi’s Livin’ on a Prayer. Arguably, you could say I was; “livin’ on a prayer,” this past year. I often times find myself thinking a lot, about all sort of things. Why am I alive? Why are they dead? What if I did this instead of that? How can I make this gluten-free recipe delicious? How many days until Justin Timberlake’s new CD comes out? How is the Cowboy’s defense going to be next year? Why did so-and-so say that to me? How am I going to afford health insurance when my Cobra expires?–there is no telling what is going through my head at any given moment. Things that I question, I try to research and educate myself and by making myself some-what more knowledgeable on the subject. I usually just end-up attaining a lot of useless facts, and being left with a ton of unanswered questions.
For instance, how did I get a life-saving liver transplant on the very last day I needed one when just one day later I would be dead? How did I survive not one-but TWO brain surgeries for invasive aspergillosis which has a 80-90% mortality rate? How could my body endured three MAJOR surgeries with-in a five week span? How was I able to run the mile in 10:39 last month when I couldn’t even walk in May? The strangest part is, every negative thing thrown in my way this past spring/summer, not only did I come out alive, but I came out swinging! I know I strive to work hard to be the best that I can be in everything I do, but that certainly has it’s limitations. Just like I have my “MO-fia,” there is someone, something, somewhere that has my back. I am very grateful for what must be some-sort of divine intervention, which I like to think of as my guardian angels, and I don’t think I have just one.
I can’t explain the answer to these questions I asked above with a mathematical equation, or a scientific law. I also can’t explain it with a religion necessarily either. What I choose to explain it with is a lot of love and a frame-of-mind; a mind-set that is unwilling to compromise, unwilling to lose. I consider myself a believer-I believe in my family, I believe in my friends, I believe in my guardian angels looking over me, and most importantly I believe in myself. I work hard at my goals, because I believe I can achieve them. I am here now, alive and making great strides, and for that, everyday, I give thanks for everyone’s belief in me, my amazing medical team, my mental and physical strength, my family and friend’s love and support all combined into one big positive force that propelled me to push with all of my might through the numerous, death-defying obstacles in my way. I have gotten knocked down many times, but when I have gotten up, I only stood taller and stronger. I lost my pulse four different times, and I am still here, doing better than ever. I don’t believe there is anything or anybody out there that can knock me down, and keep me down, and whether that is true or not, it doesn’t matter because it is what I believe. Someone can try, but good-luck with that, you will have the “MO-fia” after you, and I’ll be too busy “livin’ on a prayer”. : D
“We’ve got to hold on, ready or not. You live for the fight when it’s all that you’ve got. Wooaaa, we’re halfway there. Wooaaa livin’ on a prayer. Take my hand and we’ll make it, I swear. Livin’ on a prayer.”
This past March (2012) I was experiencing what the doctors call, “acute liver failure,” which essential means that my liver was losing its ability to function; at a very rapid rate I might add. Your liver has a variety of vital functions including processing just about everything that enters your body. It then regulates it, metabolizes it, stores vitamins/minerals, assists with digestion, removes waste, rids the blood of toxins, and I’m sure many more things that I don’t know a thing about. I am no doc, but every function listed above sounds like it plays a pretty legitimate role in how our bodies function. At this time, basically all I knew is that my liver was ready to say, “see you later jack ass!”–I just didn’t know when or how soon that was going to be.
In late February/early March, the first symptom that I identified was jaundice. I usually have a decent tan going on, but when I started getting more “tan” without going into the sun, and the whites of my eyes were the color of a lemon peel, I knew something wasn’t quite right.
I had other symptoms, but I disregarded them, mostly because I have come to find I am quite stubborn, in a way much like both of my grandfathers; getting me to go to the doctor for ANYTHING was a task in itself.
So, I Google searched “yellow eyes” and what I my results yielded was that I was “jaundiced.” I was thinking, well what the hell is jaundice? I looked that up it is pointing toward something being wrong with my liver.
In a normal functioning body, your liver breaks down billirubin (left-over old red blood cells, yellow in color) and removes it through your waste, (which I like to refer to as “poopski”), but since my liver was failing, it was unable to break down and remove the billirubin. The billirubin was building up in my bloodstream, along with toxins that my body was no longer removing on it’s own, and that is how I became jaundiced. No bueno.
Along with being jaundiced, I began starting to experience edema, which is swelling caused by fluid trapped in your body. My feet and legs became so filled with fluid that you could press down on my foot and it would leave a big indention with your finger, and a few seconds later it would resume its position of being a big, fat, jelly foot. Simply put, it was gross. Not only were my edema-induced legs and feet absolutely disgusting to look at, but they were quite painful to walk on. I had to constantly lay down and prop my feet above my head in attempts that maybe gravity would displace some of the water and reduce some of the swelling. That worked for about all of two-seconds before my feet would swell-up and be in awful pain once again. My docs put me on a low-sodium diet to reduce retaining any additional water, which would just make the swelling even worse.
Four years prior to this time, I had been diagnosed with Celiac Disease. Celiac Disease? I was like, “what the hell is that?” My GI doc in Greenville failed to fully educate me on what the hell that was, plus not only is eating gluten-free a pain-in-the-ass when you are always on-the-go, but it is expensive, and it usually tastes like cardboard (GF has come a long way since them in terms of awareness, taste, and options). After about two months of being gluten-free, I said the hell with it, I don’t have any symptoms, that doc must be nuts, I’m not spending extra money on all of the crap that tastes horrible, AND it doesn’t make my stomach feel sick, so the hell with it!
The hell with it alright. Four years later the Celiac monster re-surfaced during testing and so the docs added gluten-free restriction to my low-sodium diet. At this point, I can’t get these fluid-filled stumps that I’m supposed to call feet into my shoes, they hurt, and I am on a low-sodium, gluten-free diet, somehow only managing to looking more and more like a balloon with arms growing exponentially by the day. The edema was painfully obnoxious at the time, but the worst had yet to come.
If my body wasn’t completely swollen and disturbing to look at enough, it began building up large amounts of fluid in my abdomen called ascites. It was starting to fill-up quicker than my skin could stretch, developing almost instantaneous stretch marks. My stomach got huge and when I say huge I really mean gigantic! Dear Mo’s body, can you get any more swollen, I mean seriously? If I bumped into a sharp corner, there was a good chance there would be a “Clean-Up, Room 302!” I’m just kidding, I wouldn’t actually pop like a balloon, but you get the point. If you can imagine, I was beginning to get very frustrated because it seemed like no matter what I did to try to keep the swelling down; it just just kept getting worse.
I have looked back at pictures and I looked like a bowling ball with two fat stumps sticking out! Not to be a negative Nancy, but throw on a high dosage of prednisone to my unbearably fat feet, legs, and stomach, and now I have no option but to add a “chipmunk” face covered in pimples and cysts to that laundry list of already highly frustrating side-effects that prednisone offered. Sooner than I expected, I would have something really worth complaining about.
Fast-forward about a month down the road to Yale in the ICU, and I’m on the verge of dying. A swarm of my medical team were literally pumping me with bags upon bags full of sodium chloride to try to keep me alive, flushing out the toxins building up in my body. My failing liver is unable to properly dispose of these toxins, so where were they going if my body wasn’t eliminating them? Up to my brain, which led to on-and-off bursts of dementia.
Things were not looking good, and I just kept getting heavier and heavier with fluid. I believe the heaviest that they have me recorded weighing-in was a weight of over 220 lbs, which is about 50 lbs over my prior weight. Now, I have never been super-model thin to start off with, but that is an abundant amount of extra weight to be carrying around all-of-a-sudden, no matter who you are!
While I was in the hospital, they checked my weight frequently because it would change so dramatically from day-to-day. My weight each day depended on how much I urinated the night before. At around 4 a.m. every night, the evening PCA would come in and take my weight. After transplant, no joke, I would lose seven-nine pounds in one night…ONE NIGHT! (I’m assuming that is because my new liver was working properly, that my body was then able to dispose of the excess liquid properly? I am no doctor, so that is just my assumption based on what I have read.) Either way, I was losing the weight, and I was losing it fast; too fast! On June 1, I weighed in at 161.4 lbs, about 60 lbs lighter in less than a month.
While it definitely was nice to not be carrying around so much extra weight, it was happening way too fast. I acquired stretch marks all up-and-down my upper thighs to my calves, my stomach, my feet, and even under my boobs. Thank you to some Mederma and other creams, those stretch marks have subsided greatly. I continue to lather myself in cocoa butter creams daily in hopes to rid the marks even more, but my stomach area definitely is taking the longest to reduce the marks.
When I was released from the hospital on June 14, 2012 I weighed approximately 155 lbs. I have been off prednisone now for about a month and today (12/5) I weighed-in at 128.8-lbs. Of course each scale varies a lb or two or three here and there, but I have lost roughly 90-lbs since my heaviest weight at Yale, about 50-lbs from my pre-transplant weight, and about 25-lbs since June (6-months). I never really broke it down like that, but that is a lot of weight when you really think about it! I am very proud of my progress and that gives me the MO-tivation I need to further keep pushing myself to get stronger until I am fully recovered. I am actually aiming to put-on some weight, in the form of muscle, but I have been having a tough time doing so because my legs have not been fully cooperative in my efforts to do so. In one of my next blogs I will attempt to address the struggle I have had with my MO-bility on my road to recovery.
So it’s Monday. Monday is just one of those days that just hardly ever seems to have any appeal whatsoever. Yesterday may have concluded to be an awesome weekend with your friends and family, but it flew by so fast, and now all you can hear is the annoying sound of your alarm going off. Your next move is to probably hit the snooze button a few times because those few extra zzzz’s are better than any Monday could possibly be. Waking up early to go to school or work is never ideal, but Mondays just always seem to be the worst day of the week, particularly because it is the farthest away from the weekend. For most people, it is the kick-off to a treacherously long school or work week, and Friday can never-ever seem to come soon enough. You might not even have a typical school or work schedule, but everyone still experiences their own “Monday” in one way or another, no matter what your lifestyle or schedule entails.
So, it’s Monday, and just because it is Monday you’ve started off your week with the negative juices already coursing through your veins before you even step out the door. Anything seems better than going to work or school at this point. Well, how do you expect your day to turn out when you’re approaching the day with that kind of attitude? I will tell you right now that the guy/girl who woke up on the “right-side” of the bed today is going to beat you in today’s race simply because he/she is already seeing things in a positive light.
I believe that just about anything you perceive as negative, can equally be opposed by something positive. For instance, in this case, at least you go to school and are receiving an education. At least you have a job, almost 8% of the country is unemployed. Would you rather be uneducated and unemployed? I will assume not, because I can’t imagine the possibilities you WON’T have being uneducated, unemployed, and a poor attitude on top of that.
I’ll admit, maybe Mondays do suck for some people. Maybe the only thing you have to look forward to is tonight’s episode of “The Voice” or Monday Night Football? But you know what, it’s really not that bad, something could always suck worse.
I can tell you a time that really sucked. When I was sick in the hospital at Yale for 52 days, I had no concept of what was a Monday or what was a Friday, or any day for that matter. Each and every day that I was conscious, started out pretty much the same, no matter what day it was. The day-shift nurse arrived usually sometime between 7 am and 8 am to introduce himself or herself, write their name on the dry-erase board, the PCA’s name, and the date. Looking up at that dry-erase board was really the only way I knew what day or date it was. The highlight of my day, besides my family visiting me, was usually getting a phone call or a text from friends back home in South Carolina, and that is only when I was having “good days” and was able to comprehend who I was. There were lots of “good days,” but there were plenty of days my family tells me about that I have absolutely no recollection of occurring; days completed missed because I wasn’t conscious.
While I was in the hospital, I usually did not get much sleep. Even if I was lucky enough to fall asleep, I was woken up every 2 hours or so to get my vitals checked or blood drawn for testing purposes. Breakfast for me was not your usual bowl of cereal or breakfast bar on-the-go. I have been diagnosed with celiac disease, so anything I eat has to be gluten-free. Not exactly what you would call convenient, or even tasty for that matter, especially in the hospital. I will say that Yale did offer a pretty good gluten-free selection, it was no Chick-Fil-A breakfast by any means, but for what it was, it was decent.
So, after I made my breakfast selection, no matter what I ordered, (it could be a bowl of Chex cereal and a banana) it would take 45 minutes to arrive. So, by the time my meal had finally arrived I was usually swarmed by doctors and their “team” of colleagues (attendings, residents, etc) ready to tell me a whole bunch of things that I usually could not say or pronounce correctly. Can I have the dumbed down version please? Thank you.
At one point I was being seen by seven different specialties; that is a lot of docs checking you out all over each and every day (cardiology, neurology, liver, kidney, infectious disease, hepotology, and hemotology). Each day they would come in to give me test results or tell me what kind of procedure(s) they were going to do to me on that particular day.
Finally after finishing breakfast which was interrupted at least a good 5 times by the nurse or visiting teams, next on the agenda was waiting to be carted away on a bed or in a wheelchair to go get an echo, an X-ray, a MRI, or whatever I was having done that day. Sometimes I had two or three different tests performed in a day. That was pretty much my day, and then the whole routine would pretty much start over very similar the next day. Mind you, this is when I was conscious, and this does not include what I consider my “non-routine” hospital days.
There were a few days that would start off “normal,” for being in the hospital that is, but then all I could remember is going to sleep in my room on the 9th floor and waking-up two days later in the ICU with tubes in my mouth not having any idea what had happened or where I was. That really blew my mind. What if I had never woken up? It’s difficult to think about sometimes, and it always makes me emotional when I do start thinking about it; but I did wake up, and I am doing great now, and that is all I can be happy for. (In later blogs I will address some of the not-so-normal days spent at Yale, with the assistance of my family who unfortunately had to witness some pretty terrible things from what I hear.)
Even though for 52 days straight I was a prisoner to Yale, in retrospect, you just have to think that It could have been worse. It could have been 100 days, I might still be there, or even worst, not be living at all. During that period, I had become acquainted with my medley of nurses on both the 4th floor ICU, and the 9th floor (the transplant floor) because I had spent so much time back-and-forth between the two floors. The day I was admitted to Yale Medical, April 24, 2012, I was put on the 9th floor and my nurse’s name was Maureen. She went by Mo. I have gone to school with several female “Mo’s,” but it’s not as common as say maybe having a nurse named “Sarah” or “Amanda”. How ironic I thought?
You may think that everything that has happened to me is horrible, and no doubt nothing about it has been a pleasure; but the way I see it, everything has been a blessing in disguise. For some unknown reason it was meant to happen. Yes, I did have to fight hard, and yes I do believe there where some angels looking over me, but according to the science of it all, there is a much-much greater chance of me being dead than alive right now. All of those negative statistics don’t matter right now, because not only am I alive, but I am doing great, better than anyone could have imagined! I have experienced pain, and feelings, and moments that I would never wish upon my worst enemy, but in the end I am glad to have experienced it, to have survived it, and here to be able to share some of these “MO”ments with you.
I stand here now, the healthiest I have probably ever been in my life. Not for one moment in the 16 days I spent in the hospital at Greenville Memorial or the 52 days I was a patient in the Yale ICU or Transplant floor did I think I couldn’t come out alive, deep-down I always felt I was going to make it. Several times I could sense my family’s nerves’, and occasionally I even sensed the doctors lacking conviction in me surviving. I still did not get scared. Whatever was going to happen, was going to happen, but what is the most important of all, is that to me, in my head, I had everything under control. I think sometimes I was the one giving my family and doctors hope. My constant positivity and my vibe gave everyone in the room a better feeling from when they had walked in. Even when I physically couldn’t make myself smile, I still tried. That is what kept me in the game; that is why I am still here.
At times people may have been nervous about my outcome, but everyone around me, near or far, believed in me, and so I believed in me. I will say it over-and-over again, it is mind over matter. Your mind is the most powerful weapon you have. You can use that power for good, or just as easily for bad. I try to channel my mind and it’s thoughts in a positive direction, and just look, I have turned some pretty horrific things into the unimaginable great. Why can’t you do the same? It’s not that you can’t, I believe you can do anything you put your mind to, but you just have to truly believe in it too. Remember, it never hurts to have a few people believing in you too! It may be Monday, but there is no better day than a Monday to start off with a fresh mind and a good outlook on life. I don’t know about you, but I try to turn a Monday into a MOnday : )
“Itis not work that kills men; it is worry.” –Henry Ward Beecher
Hello family, friends, acquaintances, and everyone in between:
I have been asked by family and friends alike to start several different projects in regards to my personal journey that began this past spring of 2012. Surviving two life-saving craniotomies after a last minute liver transplant, gives me a lot to talk about. I am finally well enough to put my words into action, and so here I begin.
My journey has hit every up-and-down, and all-around you can possibly wrap your head around, but, thankfully I am here now today to share my story. Through everything that has happened to me and my family in the last half-year, I have learned a lot about the true meaning of friendship, family, and what life really is all about. I plan to share some of my experiences, my thoughts, and my visions (along with the assistance of some of my friends and family who can recall things that I can not). If my blog does nothing for you, that is okay by me, I’m just here doing my thing, and you have the right to do your thing. If what I say or do can help you better who you are or what you do in any way, well, then that is well worth writing every bit of this : )