The 2014 Transplant Games of America will be held in Houston, TX July 11-15!
Dearest friends, family, and supporters,
I am overwhelmed with gratitude and excitement to announce that I will be participating in the Transplant Games of America in Houston, TX, July 11-15! I will be representing the Transplant Team of Connecticut in the Golf, 5K and two other sporting events of my choice! This life-saving organ donation has given me an opportunity to lead a life with meaning and purpose, honor those affected by transplants, and inspire others to save lives through the generosity of organ donation.
Participating in the Transplant Games just two years after my miraculous transplant and brain surgeries is a dream come true! I am so excited at this amazing opportunity to travel, meet fellow transplant recipients and donors, and get back to my athletic roots! In order to make this dream become a reality, I need some serious help fundraising. This year it will cost an estimated $50,000 to send the Transplant Team of Connecticut to the games. In order to afford this, I will be setting up a personal donation page to raise a goal of $2,500 for my participation.
If you are interested in donating so I can compete at the Transplant Games of America, please visit my GOFundMe page at http://www.gofundme.com/JustSayMo
The Transplant Team of Connecticut, Inc. is a tax-deductible, 501c(3) non-profit organization. Personal checks can be mailed to: PO Box 1073 SMS, Fairfield, CT 06825 with the memo: “In support of Monique Gesualdi.” (Tax ID#08-0778187).
Thank you so much for your continued support and I CAN NOT wait to make you proud at the Transplant Games in July!
“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James
Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive. Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”
Let me give you a little background information. I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive. There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital. I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career. What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.
My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom. I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all. Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list. Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!
Shortly after my transplant, I exhibited some serious cognitive dysfunction. I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again. I began experiencing painful and distracting visual sensations, such as: colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!” Excuse me? What did you say? “You had brain surgery!” I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp. There was absolutely no other thought in my head at the time except, you’ve got to be effin’ kidding me?
Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had brain surgery? What for?I wondered. Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on immunosuppression in Greenville.
It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that. My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain. This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.
The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night. Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled. Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.
Top photos: Post-transplant, pre-brain surgeries, May 2012. Bottom photos: Post-transplant, and two craniotomies (brain surgeries).
When I came back to consciousness the next day, there were doctors and family standing all-around me. “What is your name?” I was asked to write. My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique. He asked me to read something from across the room and write it down, so I did, without any problems. My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read. Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J). Hey, well at least they knew they didn’t cut out my sense of humor during surgery!
Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments. You’re probably thinking, wait you got excited to go to a doctor’s appointment? Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?
Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor. Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection). As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back. The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily. The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.
My brain scan, 3/13/14 at Yale-New Haven Hospital. While I anticipated being taken off the Voriconazole, what I did not expect was my MRI scan to look like this: HOLE-y MO-y! I showed my grandma and her reply was, “Now I know what is wrong with you.” She’s quite the comedian, haha.
That sounds pretty serious, but I’m not scared at all. This June will be two-years since I survived my brain surgeries to remove the aspergillus. People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is unbelievable. Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!
I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it. My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation. I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.
One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life. For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well. If I didn’t get sick, I probably would have never changed my ways. The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.
In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire. My sickness wasn’t a curse; it was a blessing in disguise. It saved me from own worst enemy: myself. I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found 🙂
“If you don’t get lost, there’s a chance you may never be found.” ~Unknown
As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013. For more info on our club, please go tohttp://www.westconntoastmasters.org.
“The greatest wealth is health.” ~Virgil, Ancient Roman Poet
Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.
As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU. I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis. While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.
The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude. When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to. Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body. One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.” Aunt Caryn started laughing. I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!” While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!” At this time we both started laughing uncontrollably! While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were. Instead of dwelling on all of the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.
The second lesson I learned while being sick in the ICU, is that life really is about the “little things.” I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you. When I was in the ICU, there were many things I couldn’t do on my own. I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all. When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months. This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving. I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie. I was restricted from common, day-to-day things that we don’t even think twice about; we just do them. My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them. I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.
The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life. Being sick is a burden. There’s no way to say it besides it “sucks”. It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to. While I was sick in the ICU, I learned that some people just couldn’t be bothered. Those same people who couldn’t be bothered, are sometimes the people you needed the most. My sickness brought out the best in some people, and it also brought out the absolute worst in others. I’m only going to talk about the best though. One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut. One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country. I learned family is something you should never take for granted. When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family. Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!
After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude. I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced. I will leave you with this:
“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult
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.
In the hospital at Yale after my second brain surgery in (June 2012) vs. (January 2013) livin’ it up–visiting family at the beach in St. Augustine, FL
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.
Edema and ascites due to failing liver caused severe swelling and the beginning of stretch marks that quickly worsened as my condition worsened
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.
Chipmunk face and all, still happy to be alive and kicking!
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.
May 29, 2012 vs Dec 5, 2012
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.
The dry-erase board with the date was the only way I could remember what day it was.
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.
My sister Desiree, flew up from Florida to be by my bedside. Even when I couldn’t smile, I still tried.
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 : )
Much Love,
Mo
I completed the 3 mile Liver Life Walk, held in Stamford CT on September 30, 2012
Just Say Mo Foundation 