My blog posts have been far and few between over these last couple of years, but today I would like to share a featured piece in the “Sugar & Strength” blog which highlights overcoming my liver transplant and brain surgeries back in 2012. Thank you to Annie Lake for this blog, and please check out her blog “Sugar & Strength!”
Click here to read the blog: http://www.sugarandstrength.com/?p=423
Last night I received some very exciting news: After submitting all observations, passing my practical & written exams, and submitting & passing on my 43-page paper, I have officially passed Level III of LPGA Teaching & Club Pro certification and have obtained my Class A status!
This is so much more than an email or a piece of paper to me; less than 5 years ago I was fighting hard for my life, and then the odds are nearly 99.9% against you, it would have just been easier to give up. After successfully surviving a last-minute liver transplant followed by two life-saving brain surgeries, the road to recovery was the highest mountain I have ever had to climb, but at least the opportunity to have a second chance at life was available thanks to my Uncle’s wife, Cindy who got me connected to Dr. Manuel Rodriguez Davalos at Yale-New Haven Transplant Center. The tranplant would have not been possible without the amazing help from Dr. R, Dr. Schilsky, the Yale Transplant staff, and my supportive family.
My transplant followed with two years of of a variety of much needed therapies that included physical, occupational, speech, visual & psychotherapy, multiple times per week and transplant and infectious disease check-ups every few months until I finally had the health, strength, and doctor’s approval to get back to working.
The next obstacle would be, well how do you get to and from work every day when your half-blind out of each of your eyes resulting in no peripheral vision to the right and not permitted to drive? You seek out a highly recommended behavioral ophthalmologist named Randy Schulman (thanks Kristine Loo for the referral). You attend weekly visual therapy sessions from one of the best, April Banores Barna, do all of your visually therapy exercises every night, and say a lot of prayers that some of your vision comes back. When you get word that some of your vision has improved, you feel another miracle has happened! Has enough perioheral vision returned? Is it possibly enough to see a driver rehab specialist? You reach out to your Uncle’s wife Cindy who recommended Howard J. Knepler and Knepler driving school and see if your eligible for driver rehabilitation. When you are, and you pass driver rehab, and driving again is no longer an impossibility, rather driving again becomes another accomplished goal despite the improbable odds against success, you become the happiest person alive!
With the rate I was going, NOTHING seemed too out of reach for me, rather everything just required vision (no pun intended ;), determination,persistence, and patience. This is when I decided I was going to take this opportunity to pursue a career that I regretfully never pursued post-college. I gave up on it before I ever began it, and here was my perfect chance to have a go at it. Since the age of 11 I always wanted and thought I was going to become a Golf Pro, but now the decision was made, my mind my committed, just tell me how to get there.
Some four-and-a-half years post transplant and brain surgeries, two years post driving, and two years working towards my LPGA certification, here I am, a Class A Member! I may have reached the top of this mountain, but there are many more mountains which I am determined to climb, the next being a PGA Class A member. Thank you for any and all who have helped me get to where I am today, I couldn’t have done anything alone. Your encouragement and support has been the vital fuel when my tank seemed empty. I am so grateful for all life has blessed me with, my family and friends, my health, and now my Class A LPGA! When life blesses me with a chance to play golf with my favorite celebrity of all-time, Justin Timberlake via the Ellen Show, that will just be the cherry on top! (Just throwing that out that since I’ve had a pretty success rate with the Gods so far!; ) Until the next mountain to climb…
Dearest family, friends, and supporters,
Here is the full four-minute story that aired on the 7 o’clock news on WFSB Channel 3 this evening. Thank you to John Holt for putting together an amazing story! I also want to say thank you to all of my family, friends, and supporters who have been there for me through every up-and-down over the years, as well as a very special thank you to my anonymous organ donor who has given me a second go at life. This new life has given a whole new appreciation for what life really is about and reinvigorated my drive to live a life of purpose and ultimate meaning. I had long been searching for a “passion” that would bring a sense of fulfillment to my life, and it wasn’t until my organ donation until I truly knew what I was supposed to be doing with my life. Now I am certain that no matter what I am doing, where I am doing it, or who I am with, that I will be raising awareness about the life-saving benefits about organ/tissue donation with a piece of my donor guiding me every step of the way. Thank you all again, and I hope you enjoy the video!
P.S. Maybe we get this hands of The Ellen DeGeneres Show so I can accomplish my next mission of spreading awareness about organ/tissue donation on her show! Thank you for all of your help and support in helping me reach this goal that I am determined to accomplish!
“You were born with the ability to change someone’s life. Don’t ever waste it.” ~Unknown
April is Donate Life Awareness Month, so for the month of April I will be raising awareness and sharing stories about organ donation and how it has saved my life, and the lives of millions of others.
On May 3, 2012, I received my life-saving liver transplant from an anonymous donor, forever changing my life. I am not only beyond grateful for this second chance at life, but I am also thrilled at the opportunity to make a difference in other people’s lives by inspiring others to become registered organ donors.
Since my liver transplant, which occurred two-years ago (this May 3rd), I have run in five 5Ks and broken 80 several times on the golf course. I’ve gone to see Justin Timberlake, Bon Jovi, Taylor Swift, Jason Aldean, and FL/GA Line perform live. I had the honor of meeting Mr. Shark Tank, Mark Cuban, at my best friend’s wedding to NHL Dallas Super “Star” Mike Modano. I have also proudly been the American Liver Foundation’s Liver Life Champion in which I have given several public speeches about my story and also filmed a Public Service Announcement in efforts to raise awareness about the life-saving benefits of registering to be an organ/tissue/blood donor.
This summer, I will be competing nationally in my first Transplant Games of America, against other transplant recipients and donors in golf, 5K, and two other sporting events of my choice! Also this summer, my childhood dreams will finally come true when I get to see Justin Timberlake perform live at the Mohegan Sun Arena, in Uncasville, CT 🙂
None of this would be possible if it wasn’t for an anonymous donor who decided one day to check “yes,” yes, I will be a registered organ donor. That is it, one simple, effortless “yes” which at the time meant probably nothing to him/her, but that one little “yes” has allowed me to do all of the great things that I have mentioned above.
Growing up, I was very determined, hard-working, and had a relentless passion to succeed. The drive I innately had as a youngster began to fade and transform into uncertainty and doubt mid-way through my collegiate career. After I graduated from college, I felt very lost in direction and in purpose. My purpose in life was nothing but unclear, habitually wreaking havoc within my soul. Somewhere along the round I had fallen into a repetitive routine of nothingness. “What am I doing with my life?” I wasn’t pursuing my dreams, and I was not engaging or a part of anything that felt fulfilling and made the heart and core of myself smile. Maybe perhaps it was no coincidence that I became fatally ill, because honestly, my soul had felt dead for years.
In March of 2012 I diagnosed with stage-4 Liver Cirrhosis, with the initial diagnosis due to Budd Chiari and Factor V Leiden. I oddly didn’t see my diagnosis as a misfortune, rather, I saw it as an opportunity–an opportunity to change my life, an opportunity to regain my purpose, and an opportunity to impact the lives of others. My illness resparked my drive and passion to succeed; it lit a fire under my inner competitor, and my inner competitor perceived my illness as a challenge. This wasn’t your routine challenge though, I was facing undoubtedly one of the toughest and most fierce competitors l have ever had to face: I was up against death.
During my liver biopsy at Yale, my liver was accidentally “nicked” which caused unnoticed internally bleeding until one evening on the way to the bathroom, I just collapsed. “Code Blue! Code Blue!” I could faintly hear as my eyes shut. Several episodes of cardiac arrest ensued with the likelihood that my last days were behind me if a liver match was not found in the next 24 hours. With the National Average wait-time for a liver match being 361 days, it seemed like I was going to need a miracle to survive. You may not believe in miracles, but You might want to start.
Within 24-hours of my death-defying experience, my medical team at Yale-New Haven started prepping me for liver transplant–word had gotten out there was a potential matching donor for me. The stars aligned in my favor, and on May 3, 2012, I was a recipient of a last-minute, life-saving liver transplant from an anonymous organ donor.
While it was amazing when I had finally awoken from the anesthesia to find out that I had a liver transplant, I did not have much time to be grateful before complications from the transplant unfolded. A fungal infection, known as invasive aspergillosis, had manifested within my respiratory system, travelled into my bloodstream, up to my brain, and manifested into a serious and highly fatal infection. My body was too weak from surgery and immunosuppressive medication to battle the infection at its infancy stages like a “normal” person’s immune system would have, and so it aggressively started to cause destruction in the occipital lobe of my brain.
Invasive aspergillosis in immunosuppressed patients has a an extremely high mortality rate, approaching near 100%. Despite these odds, my medical team worked very hard at keeping me alive. I underwent two extremely risky brain surgeries combined with intensive six-seven hours of invasive anti-fungal treatment every night for several months.
Whether the brain surgeries and anti-fungal treatment would save my life was a question that even the top medical surgeons in the country at Yale didn’t know the answer to. All we could do was give it our best shot, pray for a miracle, and sit back and see how my destiny would unfold.
According to medical statistics and previous transplant patients who have acquired invasive aspergillosis in their brain, it is utterly unjustifiable as to why I am alive today. While the statistics and my doctors may not be able to explain why or how I became so ill, so quickly, or even how or why I have survived these several life-threatening illnesses and surgeries all back-to-back-to-back in such a short time, all I do know for certain is that I am thankful. Thankful for my family, thankful for my friends, and most importantly thankful for my donor, their family, and their generous donation. The whys and hows of my survival really don’t matter; what matters is that I am alive, I am doing fantastic, and I am ready to change the lives of others.
My story of survival is one that I believe all throughout the world need to hear. I am living-proof of the life-saving benefits of organ donation. Because my anonymous donor was registered as an organ/tissue donor, his/her selfless act saved my life along with saving or enhancing the lives of 14 others on that third day of May. Currently, 18 people die each day because there is a shortage of registered donors on the list. Eighteen people every day, thousands each year, could be saved and have a second chance like I did, if we all checked “Yes, I want to become a registered organ donor.” One organ donor can save up to eight lives and enhance the lives of up to 50 people! A swift check of “yes” is all it takes to saves lives and be a hero to someone and someone’s loved ones.
You might be supportive of organ donation, but are you a registered donor? As Benjamin Franklin once said, “Don’t put off tomorrow what you can do today.” Don’t wait, donate.
For more information about organ donation and becoming a registered donor, please visit these websites:
Watch my video and see exactly how organ donation has saved my life “The MOtivational MOvie” which shows my two-year journey of having a life-saving liver transplant, brain surgeries, and my life as a survivor.
As you may already know, it is my dream to get on The Ellen DeGeneres Show and raise awareness about organ/tissue donation. I have made a short-movie called the “MOtivational MOvie” about my journey of overcoming a life-saving liver transplant and a fatal fungal infection in my brain that I acquired post-transplant (which has nearly a 100% mortality rate in transplant patients).
Organ Donation Month happens to be right around the corner during the month of April, so there is no better time to share this video than now : ) Please help me share “The MOtivational MOvie” so it can get into the hands of Ellen, and also raise awareness about the power of organ donation! Thank you so much for your support and helping me make my dreams come true!
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.
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!
“It’s our challenges and obstacles that give us layers of depth and make us interesting. Are they fun they happen? No. But they are what makes us unique. And that’s what I know for sure….I think.”~ Ellen DeGeneres
Yesterday at our COPE (Community Outreach for Purpose & Empowerment) meeting, we had a wonderful guest speaker, Ellen Boyle. Ellen has endured some hardships throughout her life, but you would never know it as she radiates strength, determination, and happiness. One of the things that stuck in my head from her speech was when she our group members, “What makes your heart sing?”
As she called upon me, I fumbled my words, not knowing the true answer to that question. I mean…I enjoy many things: golf, working out, writing, Justin Timberlake, but I didn’t think any of those things were the answer to her question, she was looking for something much deeper, as was I.
Ellen went around the room repeatedly kept saying, “Don’t die with the music in you. Don’t die with the music in you.” This quote from Wayne Dyer immediately opened my eyes as to what Ellen was hoping we would tap-into ourselves.
Maybe you, like myself, in your mid-20’s had that moment when you thought, “What am I doing with my life? What is my purpose? Is this it for the rest of my life?” If you’re like me, you realize you are fortunate to have food and shelter everyday, as there are many people who do not share your same privileges: Yet, something is missing. There is a void and you want more. But what, what is it that I’m searching for?
Ellen nailed it. Don’t die with the music in you, but rather, share your music, and make a difference in someone else’s life. Whether you accept to recognize it or not, we are all talented human-beings in one-way or another. Go out and make a difference in someone else’s life every, single, day. It doesn’t have to be a big favor or gesture, it can be simple, like: saying “hi” to a stranger, making dinner for your busy roommate/spouse, or giving a nice big-fat hug to that person who hasn’t smiled in days. Do SOMETHING to make a difference in someone else’s life and you will begin to notice that “void” you were once trying to fill, is now overflowing with love and gratitude. Then, not only have you filled your own empty void, but more importantly, you will also make someone else’s day a little bit brighter; and that my friends, is what will make your heart sing.
Speaking of “Ellen”, and making someone else’s day a little brighter, Ellen DeGeneres is notorious for putting a smile on people’s faces across the world! For that reason, she is one of my idols, and like both Ellens, I want to make a difference in the world.
It is my ultimate goal to get on The Ellen DeGeneres Show, to not only meet my idol, but to raise awareness about an organization I genuinely support: Donate Life.
After receiving a miraculous liver transplant and surviving two risky brain surgeries that have an almost non-existent survival rate, I know what it truly means to be given a second chance. My body wasn’t the only one that got a second chance; my soul was completely rejuvenated, as well. I am so grateful for this opportunity to have a fresh start and to make a difference, not only in my life, but in the lives of many others. As a recipient of a life-saving transplant, it is my responsibility to raise awareness about the importance of becoming a registered organ/tissue donor.
April is National Donate Life Awareness Month, and I think there is no better time to get on The Ellen Show than in April, but I need all of the help that I can get, so dearest friends, family, and acquaintances, I ask you to share this with your fellow peers in hopes to somehow get my story in the hands of Ellen DeGeneres.
As we talked about earlier, what makes the heart sing is making a difference in someone’s life. Ellen DeGeneres’ sincere acts of kindness have made a difference in my life, as well as millions of lives across the globe. I’d like to have a chance to be on the Ellen show and share my story to raise awareness about organ/tissue donation, so that one day I can help save the lives of others, just like mine was saved by a heroic organ donor. The greatest gift you can give, is the gift of life. Give someone life, and register to be a future organ donor today.
Thanks Ellen for being an inspiration to me and millions of others, and I hope to meet you soon!
“Sometimes you can’t see yourself clearly, until you see yourself through the eyes of others.” ~Ellen DeGeneres
Resolution (n.) The state or quality of being resolute; firm determination. A resolving to do something. A course of action determined or decided on.
2013 was a great year for me. I can easily say it was better than 2012, but my 2012 wasn’t too hard for anyone to top. The end result of 2012 was definitely favorable, but the process to get there was one that was hardly envious. Having a successful liver transplant by the skin of my teeth, with not even a full 48 hours to spare was a life-changing event in itself. Then throw on-top of that an extremely rare and fatal fungal infection in my brain and you don’t have to say much else to already know that 2012 was a hell-of-a-year for me. When I look back, I am often puzzled as to why or how I am alive today. You might be thinking, “That was 2012? We’re about to be in 2014!?” True, but most of my 2012-2013 was spent either ill or recovering from illness, so for the purpose of this blog, I am grouping 2012 and 2013 together as one-big healing time period.
While those questions of how or why I am still alive will never be answered, the matter of the fact is that I managed to persevere and triumph over the impeccable odds against me. It is crazy to think that almost 100% of people who inquire invasive aspergillosis in their brain while being immunosuppressed, die. I am one of very, very few people to somehow escape the burden of those devastating odds. Somehow, I, Monique Gesualdi, am still alive. To experience what I have experienced and to overcome what I have overcome, is a huge deal for me, and it has forever changed my outlook on life and how I treat myself. Not like you can easily put yourself in my shoes, nor would I want you to, but it is hard for me to genuinely convey to you how greatly this has affected my life in so many different ways.
For someone in my shoes, “Grateful” doesn’t even begin to describe your appreciation for life and the little things we take for granted each and every day. Things like walking without assistance, showering in a shower by yourself, breathing on your own, wiping your own ass, things like this we do every single day and we don’t think twice about. If asked prior to my 2012 what if those “little things” were taken away from me, could I do it? Could I live for two months of my life in the hospital, in-and-out of consciousness, having back-to-back-back surgeries that resulted in life-or-death? If I was asked that, I would have probably looked at whoever asked me very confidently answered, “Well that’s never going to happen, and even if it did, I can’t imagine spending one night in the hospital let alone two months.” When you are a kid, some of you have visions of yourself growing up, getting married, buying a house, having kids, grand kids, and so on. Never does anyone say, “I’m going to get fatally ill at age 26 and go from there.” But it was happening to me, and I had no choice but to face my illnesses head on.
I was up against the two most feared opponents of all: I was up against time and I was up against death. I have no way of changing time, and once you are “dead,” that’s it, you can’t go back in time and make yourself “undead.” When you are in the hospital and ICU and the doctor’s are doing everything in their power to save their life, you basically have no physical control of the outcome. All you can do is hope and pray and whatever happens, happens right? To one degree yes. To another, I’d say no. You have control of your attitude. For me, attitude was EVERYTHING. My attitude partially attributed to me being alive, able to write this blog (my medical team at Yale and my family and friends’ love and support were also the reason).
I would be lying if I said I had a positive attitude the entire time I was in the hospital. Luckily for me though, I had one of the best medical proxies you could imagine. My medical proxy also happened to be my motivator, my positive encouragement, my strength, and one of my reason for surviving; my Aunt Caryn. Some days were tough, really tough. My recovery once I got out of the hospital was especially rough on me just trying to get back to “myself” and nothing more. Physically, mentally, and emotionally I was being challenged to the extreme. Every single thing in my life had changed, where I lived, who I lived with, what I could do, what I couldn’t do. Just about everything. It was far from easy, but I knew what I wanted. I knew I didn’t want to die. I wasn’t ready, I was only 26 and I had so much left to accomplish. Deep down I didn’t want to just “make it out alive,” I wanted come out swinging. I felt like the previous two or three years of my life were wasted, lost searching for a purpose, MY purpose in life.
In my opinion, “happy” people wake up each morning because they have a purpose and they are on a mission to completing the next step of their purpose, whether they realize it or not. It could be something small, it could be something of greater magnitude, but it doesn’t matter what it is, as long as they have something inside that gives them drive. I call these people “happy” people, because they are at one with themselves, they know who they are, what they want in life, and they are continually moving forward with their lives in one way or another.
Next you have what I call the “complacent” people, they wake up each morning coasting through life. They don’t really have goals or anything that they are truly passionate about, challenging them to enhance their life in one way or another. They are complacent, and that is fine for them because they don’t want to actually put in the time or effort to get the results they “wish” for.
Then there are the “unhappy” people. These people don’t necessarily walk around with a frown on their face kicking the dirt, but what I mean is that their soul is not happy. I’ve seen these people and they don’t truly know who they are as a person, and they are not at one with themselves. Who they are and what they want to be are not the same person and this dissimilarity causes an internal tug-of-war with oneself. Eventually these “unhappy” people become frustrated with life, are typically not accountable for themselves, blame anything they can, and bring down anyone in arm’s reach of them. We have all heard the expression that, “misery loves company.” These people become toxic to themselves, and toxic to others. I’m sure we’ve all met a few of these people along the way or have even had a period of time where we ourselves were guilty of a time of self-pity. As my Aunt would say, these people “can’t get out of their own way,” and that couldn’t be any more well said.
I have floated between my three levels of “happiness,” “complacency” and “unhappiness” throughout my life, but post college, I was a resident in “Cluelessville” which is a suburb of “Complacent City.” I was clueless as to what to do with my life and how to get there, and this often times made me a frequent visitor of “Unhappy Ave.” I knew I was becoming complacent and it scared the living shit out of me (excuse my french). Since I was ten years old, golf was my entire life. Golf was my sport, it was my childhood, it was my heart, and I was certain it was going to be my future. I loved the challenge, the honor, and the prestige associated with golf. Later, golf wasn’t just a game, it was my “in” to greater things in life, particularly my education.
I attended Nease High School in St. Augustine, FL, and Furman University in Greenville, SC solely because of golf. My world was golf, and no matter whether I made it as a touring or teaching pro, all that mattered was golf was my past, it is my present, and it would certainly be my future. My second half of college, my love and passion for the game of golf, something since age 10, I planned on being my career, my future, was now something I “hated” doing due to a very bad two-year coaching experience. So I decided I “hated” golf for a while, quit, threw in the towel and let my clubs get dusty sitting in the garage. What I didn’t realize until recently was that I had let the game of golf define who I was. When you heard the name, “Mo Gesualdi” you automatically associated something with golf, and now, at this time in my life, all I kept hearing from family and friends was, “You’re not playing at all?” or if they asked me to play I always had an excuse as to why I couldn’t play, some legit, others just so I wouldn’t have to play. While it never felt right in my heart to “give up” golf, it had this guilt attached to it for some reason, I did it anyway, against my own instinct. One of many terrible decisions I’ve made in my life, but it was the decision I made, and one I can’t go back and change. I always knew I would get back to playing golf, but it would be on my own terms, when I was ready.
Along with throwing in the “golf towel,” I basically threw in the towel altogether. I had a horrible attitude about myself, about people, and about life for a long while. I was rather depressed my final two years of college and had to go to therapy, for the second time since I started college, one of four times total in my life. I kept it pretty quiet, mostly because I was embarrassed to go to therapy, and I was embarrassed about how I was feeling. I got it together so I wasn’t completely unglued, but the way I was put back together it was like using a cheap glue stick, barely enough to get me through as I was on the verge of “ungluing” at any point in time.
What was my problem? I didn’t realize it at the time, but I now realize I feared responsibility, I feared success, and above all, I feared failure. As a kid I was determined I was going to be a professional golfer of some magnitude when I grew up. Fast-forward to 2012 and I wasn’t on that path at all and it terrified me. Each year I was getting older and not any closer to the person I wanted to be. I was happy and smiling on the outside, taking pictures, having fun, partying, but deep down I was miserable. I was so disappointed in myself. I had no purpose, and the haphazard style life I was leading was proof of that.
Does that make me a bad person? I think not, because I was still kind and friendly and always have the best intentions for others. What it did make me was off-my-beaten path. I made a wrong-turn somewhere in my life and instead of slamming the breaks and turning around, I just kept driving not knowing where the road would take me.
Somehow I failed to accept that traveling 90 mph toward the ledge of a cliff wouldn’t have any repercussions. Well I know now, that certainly isn’t the case. Depression led to drinking. It was the only “solution” to not having to deal with my lack of purpose in life and for a while it felt fine because it opened up my social horizons and I became much less introverted and more easily extroverted. I also met a lot of people, and I was having a great time being constantly social. Every event or birthday party, I was there. If I made to one person’s invitation, I had to go to every invitation I encountered. I had a very hard time saying “no.” Then months passed, and then a year, and then several years, and I wasn’t making any progress in my goals or myself, and it began to eat away heavily at me. Not just emotionally, but physically too. I wasn’t taking care of myself the way I should have been, and just like a plant that isn’t properly watered and fed, I began to internally wilt until I was practically dried up and dead.
Thankfully I had always been an athlete and exercised, because I think that greatly contributed to my strength and ability to endure those three, major, life-saving surgeries in a few weeks time. Was my need for a liver transplant due entirely to eating and drinking lots of glutinous foods and beer over a few years? No, but it certainly didn’t help and surely it expedited my illness to the severity that it was. Is what I put into my body something I can control? Yes. Do I have much better control of my self in terms of how I nourish my body? Yes. Does it feel better? The answer is absolutely.
I feel people who binge themselves in booze, drugs, or food (or whatever superficial and temporary form of fulfillment that is their own personal weakness), is because they are trying mask the feelings that come with having no purpose in life. I not only observed this in myself, but some other people I was surrounding myself with. Not my true friends that I love with all of my heart, (you know who you are), but I encountered many other people over the years. I was “stuck” for a long time, but I finally had the strength and the courage to step away from this toxic environment and this undignified person that I was becoming.
I decided it was best for me to pack it up and move. But by the time I had decided that, it was too late. It was too late. I started feeling sick, and then I fell ill, and then I fell even more ill. It is a horrible feeling to feel hopeless, like you don’t mean anything, like you are a waste of a human being. I sadly had to hit my “rock bottom” before I realized that I was worthy of life, my life. But by then, it was just about too late.
“Just when you think things can’t get any worse, they do. I have learned that life is like hour-glass sand. Sooner or later, everything hits rock bottom, but all you have to do is be patient and wait for something to turn back around.” ~Unknown
I am so lucky, so grateful, so extremely blessed to have not let my rock bottom be the ultimate end-all. Why wasn’t it? Like I said, I will never know why I am still alive and how almost all of the other transplant patients who had a fungal infection in their brain don’t survive, but whatever the medical reasoning is, I know it is because I had a lot of unfinished business to attend to.
I was beyond the point of repair, but the one and only thing I could control was my attitude, and for some unknown reason to me, I managed to have a very positive, a very patient, and very determined attitude when I was diagnosed with stage-4 liver failure. I think that is because I knew it was my chance to make my life better, a chance to “start fresh” and lead a much more fulfilling life. With the love of my friends, family, and top-notch medical attention in my corner, I was determined to live. My MOtivation had been restored. The vision in my head of previously living scared with no destination was now replaced by a vision of living, a vision of overcoming this illness, and not only coming out with a new liver, but with a new mind-set, a new respect for myself, and a new “life.”
The new, transplanted self that I wanted to be is something I am trying and working at each and every day. It is a life-long commitment of hard work, dedication, and self-respect, that will always be a work-in-progress. So far, I am quite proud of myself and how far I have come mentally, physically, and emotionally in the past year-and-a-half. I have found my purpose in life, and that is comforting to my soul. All I will say is that my purpose has been revived and it is taken me back to where I started; back to to golf. I will get into that in another blog, but for now I want to leave you with this.
We are approaching the New Year, a time when people reflect on the past year, and make resolutions for the upcoming one. According to the University of Scranton, Journal of Clinical Psychology, 2012, 45% of you will make New Years Resolutions for next year, but only 8% of you will be successful in achieving that resolution. Those resolution odds are against you, just like the odds were against me, but with the right attitude, combined with determination, I believe you are capable of defying the odds and doing just about anything your little resolution-setting heart desires. My resolution, or my firm determination you could say, is to lead a happy, healthy, and inspirational life.
“The changes in our life must come from the impossibility to live otherwise than according to the demands of our conscience not from our mental resolution to try a new form of life.” Leo Tolstoy
“Don’t give up before the miracle happens.” ~Fannie Flag
It is hard to believe that eighteen months ago I was bed-ridden in the ICU on life-support. Tubes in-and-out of my throat, surgery after surgery, no one knowing whether each day if it would be my last. Living in uncertainty unwilling to even produce a thought for yourself while your body instinctively telling you that your only job for the day is “to survive,” leaves a lasting impression in your head. What I endured and have overcome in all 71 total days in the hospital last year was not only a game-changer, it has forever impacted my life. For the better.
Since my transplant, multiple brain surgeries, extensive physical, occupational, speech, psycho, and now visual therapy–I have since made great strides from the depths of ground zero, essentially. In all honesty, I feel the healthiest I have ever been in my entire life. My strength and endurance are coming around quite nicely as well. I have been working on myself, and making the best “me” that I could possibly be. I have a feeling, almost a knowingness, that I am on the right track and great things are just around the corner for me.
As I mentioned before, recovering from three very major surgeries in a five-week time span, takes quite an enormous toll; not on just my body, but my emotions as well. I can proudly say I have been seeing a psychotherapist for the past four months. My therapist, Susan, has helped me with dealing with the emotional aspect of having a transplant as well as dealing with some of the permanent life changes I have had to make. I have come a long way in the past four months. I used to cry for hours upon hours, locked away in my room. I had no idea why I was crying or how to stop. I was told it was okay to cry. It was okay to let it out. I had so much emotional grief built up from what happened to me, that it all just eventually started coming out in the form of uncontrollable tears down my face. Still, to this moment, tears well up in my eyes just writing and reflecting on my experience.
The tears are not always exactly sadness though. They are all sorts of emotions wrapped into one colossal meltdown. Happiness. Frustration. Triumph. Anger. Anticipation. Discouragement. Wonder. Hope. Appreciation. Dissatisfaction. Confusion. Gratitude. While I am still working to overcome all of these emotions, I am in a much better place than I was several months ago.
Since my transplant, I have often felt guilty. Guilty because I now have life, while my donor doesn’t. My donor is another human being, someone’s daughter, son, brother, sister, cousin, and they are dead. The only reason I am alive is because they are not. I know they are not dead because of me, I am alive because of them. It has been very tough on me, and I imagine this feeling of guilt is going to stay with me forever. I will never be able to repay my donor for their ultimate act of gratitude, but what I can do is give back in the form of being involved in organizations that raise awareness about organ donation, liver disease, and/or other topics that I desire to be a part of.
Since my transplant I have involved myself in several groups, as well as volunteer for several organizations. Donate Life Connecticut and the American Liver Foundation are just two of them, but one of the first groups I became involved with was COPE (Community Outreach for Purpose and Empowerment). COPE, formed by my aunt, aims to empower girls and young women. Members of COPE learn and improve their goal-setting techniques, engage in active plan to achieve their goals, and learn to overcome obstacles and interference that may be holding them back. Overall, the members of COPE learn how to live their life with a purpose. I created the website for COPE and update it regularly. I have really enjoyed doing this, because it allows me to get my creative juices flowing and keeps my mind sharp.
Another way I keep sharp, is through attending and participating in Toastmasters. Toastmasters is a well-recognized, international organization, that is focused on enhancing people’s public speaking, communication, and leadership skills. My aunt Caryn had a feeling I would be speaking publicly about my story one day and
encouraged me to join. If you aren’t a member yet, I strongly encourage you to find one in your area and get involved. I went from being completely incapable of speaking in front of a small crowd, to confidently giving a speech in front of hundreds in a short few months. I began attending the meetings last winter and have since given two prepared speeches. I won “best speech” for both of my speeches, and even won the club’s “Kalley Award” (most impact on the meeting) after my “Icebreaker” speech! My aunt was certainly right when she told me Toastmasters was going to be helpful in my future. I never anticipated how quickly though.
This year I was selected as one of the American Liver Foundation‘s LIVEr Life Champions. As the LIVEr Champion, I served as “the face” for the Liver Life Walk this past September in Stamford, CT. Leading up the event, I filmed a :30 sec PSA for the ALF, was featured on The Liver Life Walk’s regional brochure. Not only that, but I had to be one of the faces at the walk, and give a speech about my survival in front of several hundred people.
I continue to utilize my communication skills while serving as a volunteer ambassador for Donate Life Connecticut. In the past year I have been a part of the Danbury AAA donor program, attended several Donate Life events. I have also shared my survival story to the medical and ER staff at Danbury hospital, raising awareness about organ/tissue donation (through the New England Organ Bank and Donate Life CT). Just last week I was in Greenville, SC and had the privilege to shared my story with the Furman Women’s golf team. That was amazing experience, because I could see that I really touched those girl’s lives. The more speeches I do, the more confident and easier it is to speak in front of people. Hopefully it only gets better from here on out.
I have also occupied my time by returning to the game I hate to love the most, golf. Last January, my grandfather, Emilio, took me to the driving range to see if I could hit; I couldn’t even make one complete swing. I had so much pain in my elbows from being so weak and suffered from severe joint pain, a side-effect of several of my medications. I continued trying to workout and get stronger. By April I was hitting at the driving range with elbow braces trying to minimize the pain. About a month after that I played 18 holes. Shortly after, I was able to walk 18 holes with a pull-cart. I spent a lot of my time practicing and even played in a couple of captain’s choice tournaments in the area. In one of the tournaments, I won $100 for lowest gross score (-11) with my team. At another tournament I also won $100 for longest drive (from the red tees, don’t get too excited!). By the end of the summer I was able to shoot in the the low 80s from the white tees. As of now, I have only broken 80 once since my illnesses; a 73 at Candlewood CC (fairly easy par 71 course). This summer you better believe I am going to get my scoring average down in the 70s!
Now I am currently in St. Augustine, Florida visiting my mom and stepfather. Just a few days ago I was in Greenville, SC for a wonderful nine days catching up with my bestest of friends. I will be spending the next three weeks here in Florida soaking up the sun (while of course wearing my SPF 50), playing lots of golf, attending my 10-year high school reunion (Nease High School, Ponte Vedra Beach, FL), and doing other fun activities with my mom and step dad. Once this trip is over it is back to the grind per-say of my routine of visual therapy, other various doctor appointments, follow-ups, blood work, and daily exercise.
My transplant doctor at Yale informed me that by my next infectious disease appointment in February, there was a good possibility I would be taken off Voriconazole, my anti-fungal medication, Voriconazole. Fingers crossed, I would love to be off this medication; not only because it would be 12 less pills/day to take, but also because the medication is $4,400 a month (no that is not a typo, it is $4,440/month). Even though the price is covered by my insurance, my insurance is such a pain my ass. Each and every month I have to battle with them to get me my medication on-time, simply because my insurance does not want pay for it. Oh well, it could be worse right? Eighteen months ago I was on life-support. Battling insurance inconveniences and other minor hassles are insignificant in comparison to battling to be healthy, battling to breath, battling to to be alive.
In the last eighteen months I have learned so much about myself, about life, about death, and about the inbetween. I will never be able to fully express, in detail, the emotion or meaning of what I have been through. I would never wish it upon my worst enemy to experience what I experienced last spring, but at the same time, I prefer it happen to me rather than someone else. As crazy as it sounds, I would do it again if it meant someone else wouldn’t have to go through it because I know I can handle it. Knowing you knocked “death” on it’s ass after looking it square in the eyes, is one of the most satisfying feelings in the world. I was meant to survive. Before you survive you must endure struggle. That is what gives it meaning. So many people go along just cruising through life. When they coast, they forget about what is really important. I was one of those people.
I have a purpose and I am just now finding out what my purpose is. It begins by being able to share my personal medical journey with you so you can learn from me. What do I hope you learn? I hope you learn that giving back is one of the greatest things you can do. I hope you learn that a positive attitude is the most powerful and infectious attributes that you can have. Lastly, I hope you learn to believe in yourself, and have faith that everything is going to fall in place one day.
Eighteen months down, so many more to go….
“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” ~C, JoyBell C.
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.
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the next election. That just did not seem possible to happen. To me?? Nahhhh…….
Ha. Well it happened alright. My life was normal, I seemed healthy, then the next thing you know I am jaundiced, blowing up like a balloon, and diagnosed with end-stage (IV) liver disease among a list of other things. Is this some sort of sick joke? How could this be? I was playing indoor soccer like two weeks? I’m not dying of liver failure, can’t be. After I smacked my face a few times and realized I wasn’t hearing some diagnosis from a scene on Grey’s Anatomy, I was like, “So where do we go from here, what can we do about it?” “Your only hope of survival is a liver transplant.” Seriously? A transplant? I asked how much time my liver had left, and I was told maybe a few months. (that was until my liver got nicked during one of my liver biopsies and then I got really, really sick, really fast).
I did some research and the average time a person waits for a liver is approximately one-year. I did not have a year. I was lucky if I had a couple of months. I was admitted to Yale New-Haven on April 24th, 2012, and received my transplant nine days later on May 3rd, 2012, just one day after being on the transplant list.
When you hear the word “hero” it is often accompanied by the names of Martin Luther King Jr., Abraham Lincoln, Susan B. Anthony, Rosa Parks and many more that we have read about or heard of through family/friend’s stories, the History channel, books, articles, or online. When I think of who my hero is, I don’t have to sift through memories or recall someone I learned about in Advanced Placement U.S. History class that I learned over a decade ago. I have part of an actual hero inside of my body! That is wild, and strange, and just completely mind-blowing to me that the surgeons at Yale cut me wide-open and put another person’s vital organ into my body, hooked-it all up, and that it works better than “my own” liver that I was born with. Crazy.
Waiting for a donor organ can be a very stressful experience, since you have absolutely no idea when a matching donor will be available or if it will be available in time. I met a gentleman several weeks ago who waited for 5 years, and experienced 14 false calls and trips to the hospital after being #1 on the transplant list before he actually had a successful match. Can you imagine being told 14 times there was a potential transplant available for you, busting your ass to get to the hospital, to only be let down to know it wasn’t a match, and not knowing if/when a possible match would ever come in time!? I was officially on the transplant waiting list on a Monday and received my transplant on that Wednesday, the same day that I made it to #1 on the list! That is practically unheard of! Just another remarkable miracle that the angels were on my side, as you can see the median wait for each organ is listed below (http://organdonor.gov/about/transplantationprocess.html):
Everything about a transplant is amazing and I want more than anything to be able to somehow express to my donor’s family how each and every night before I go to sleep I thank their son/daughter, boyfriend/girlfriend/ wife/husband, brother/sister, cousin, niece/nephew for my life. I thank them because they have not just given me a vital organ necessary in order for me to live, but they have given me patience, strength, and courage. They have taught me to appreciate all of the small things that I once easily overlooked. They taught me that time is too precious and to become more adventurous and committed to try new things. I have become more involved with the community, and I am actively trying to do little things that will hopefully one day add-up to bigger things and one day change people’s lives. I was not just given a liver, I was given a purpose.
I have a part of this hero inside me, that saved my life, and I have no idea who it is. That “unknowing” definitely creates this void within me that I do not know if I will ever be able to fill, but just like many other transplant recipients, I wanted to write a letter to my donor’s family. I never in my life imagined having to write something under these circumstances, but it was a very difficult and emotional experience for me. After much struggle and tears I produced a very heartfelt, sincere, thank-you note that brought my family and even my social worker to tears upon reading it. I cry just thinking about it, let-alone writing it, because it made me feel almost selfish, because I had life, and I was writing to a family I knew nothing about, carefully selecting my words to express my gratitude for their generous act of kindness.
It has been almost six-months since I have sent my letter to my donor’s family, but I have not heard anything back as of yet. I do realize it has not even been quite a year since their loved one passed last May of 2012 and I am well-aware how emotionally tough that may be for their family considering how emotional it has been here on our end. I am aware that I may never ever hear a response and will always be mystified by the name of my hero, but I would be lying if I said I did not hope to one-day know who they were.
Of course one of the first things I wanted to do when I was well enough and some time had passed was to contact my donor’s family to express my genuine gratitude for their loved one’s heroic act, but it is not that simple. Being a donor is a confidential and all of their information is kept very private. There is a regulated process in which you can contact the family of the donor via the New England Donor Bank (NEDB). My social worker gave me the information to contact my donor’s family in which I wrote a letter and sent it to the NEDB. They then read it to see if it is fit to send. There is a very strict format as to not get too personal or give away too much of your information as to not give away your identity for confidentiality reasons. I had to make some minor adjustments and resend to the NEDB. Upon receiving an acceptable letter, the New England Donor Bank then lets my donor family know I have a written a letter. The family then chooses whether to receive the letter or not. If they do wish to receive the letter they than can choose whether to write back to me or not. If they do choose to write back to me, they write a letter and send it to the New England Donor Bank. The New England Donor Back then notifies me that a response letter has been written, which then I choose whether I would like to accept their letter or not. If both parties do have interest in meeting one-day then I believe they can do-so through a governed process. From what I have heard, it can be an awkward encounter since the act of donation may bring one party to feel grateful and indebted while the other may feel pained and anguished.
Whether the name and/or identity of my hero remains a mystery or not, they will forever be my greatest hero of all. I know it is probably hard for many of you to fully-understand what having a transplant and all of the other complications (including my two brain surgeries that ensued), and how they have forever changed my perspective on life and who I wish I be. All I really want is for just one thing I say sticks with you in a positive way, if not today, than somewhere down the road.
I have been a registered organ donor eight years before I got my transplant, just because my mentality has always been, “If I’m dead, what use do I have for my organs?” It was a very thoughtless process for me. Obviously, that is a personal choice of mine and I completely understand this decision might not be so easy for some people, and I respect other’s decisions in regards to organ donation, no matter what those decisions are.
What I do find very important is that you do make a decision either way, and act upon it. Say you actually do want to be a donor, but just haven’t gotten around to it. Just saying you want to be an organ donor and not taking the 3 minutes to register on-line frankly seems silly and lazy to me. You might potential save the life of somebody and positively influence 50 or more other people just by putting down your Words with Friends or Instagram for 3 minutes and by going to http://www.donatelife.net and becoming registered, officially.
On the other-hand, some of you may choose to specifically not become an organ donor for whatever reason it may be. One of the most common things I hear is that people believe they are not healthy enough or “too old” to be a donor. Another myth I’ve heard is that people do not wish to have specific parts of their body donated including their corneas or skin, so they do not register to donate at all. I have heard that many people do not want to donate organs because they they wish to have an open casket or be cremated. Another myth I have found out is that people do not register to be donors because they fear that in a life-or-death situation, that emergency medical personnel will not perform the necessary medical procedures in order to save their life, rather so their body can be used for donation! Finally, a myth that many may not be aware of is that you do not have to be dead to be a donor! That’s right, you can be a living-donor for a single kidney, the lobe of one lung, a segment of the liver, a portion of the pancreas, a portion of the intestine, or a portion of the pancreas.
It is perfectly fine to choose to not be an organ donor, but please make those decisions based on the facts, not the myths. While you may watch Dr. Oz every afternoon or have watched too many Holiday Inn Express commercials, you are not capable of diagnosing whether your organs are of satisfactory health level to be donated; only your doctors can. Even if some organs cannot be donated, others may be perfectly legitimate to donate to save someone’s life. Remember, between the various organs and and tissues in the human body, one person can save over eight lives and effect the lives of 50 or more!
Secondly, you can throw the “I am too old to be a donor” notion right out of the window. NO ONE is too old to be a registered donor. The oldest organ donor, to date, was a 99-year old cornea donor, and the oldest organ donor was 93 years old! Not only can you be ancient and still be a donor, but you can choose exactly which organs you wish to have or not have donated, it is not an all-or-nothing thing. Remember, it is your body and your decision is completely up to you! And yes, you can still have a normal funeral service with an open-casket and your body will not be “mutilated” as some myths falsely suggest.
If you are seriously ill, the number one priority of the medical team is to save your life! The emergency doctors and nurses working to save your life are separate from doctors who perform organ transplants, and organ donation is only considered if brain death has been determined, so no, they are not going to let you die so your body can be donated.
Finally, and one of the most amazing things you may or may not know about organ donation, is that you do not have to be dead to be a donor! As my time clock was winding down very rapidly last May, one of my best and most loyal friends, Jessica Fry, was about to get on a plane in South Carolina and fly up to Connecticut once she found out she was a potential match for my liver. If that is not a bad ass friend, then I don’t know what is. Luckily, just before I was about to make friends with the angels in the sky, one of the angels exchanged their life for mine. It apparently wasn’t my time.
Now that I have provided you with some information about Donate Life and organ/tissue transplantation, hopefully you have a greater understanding about organ donation and being a donor, and I encourage you to take the 3 minutes to register online at www.donatelife.net right now. I was extremely lucky, others are not as fortunate and die waiting for a transplant. Talk to your friends and family and ask them if they are registered donors. You have no idea what your someone else’s organs may do for you someday or how you might change someone’s life life my “hero” did. “Don’t wait. Donate.”
“A computer program matches donor organs with recipients based on certain characteristics. These include blood type, tissue type, height, and weight. The length of time the patient has been waiting, the severity of the patient’s illness, and the distance between the donor’s and the recipient’s hospitals also figure into who is the best match for a specific organ.”
117, 741 people are waiting for a transplant in the US (The largest football stadium in the U.S. holds almost 110,000 people)
18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
In 2010, 62% of living donors were women. The statistic is reversed for deceased donation.
In 2010, 67% of all deceased donors were White, 16% were Black, 13% Hispanic and 2.3% Asian.
As of December 2011, the national waiting list was made up of 45% White, 29% Black, 18% Hispanic, and 7% Asian.
Currently, more than 100 million people or 42.7 percent of individuals age 18 and older have registered to be organ, eye and tissue donors in the U.S.
The nation’s top percentage of donor include Alaska and Montana both with 79% and the lowest being New York at 13.3%. Other states include Connecticut 39%, Florida 34%, South Carolina 27%, North Carolina 53%.