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
All of my medical friends will probably find this article interesting–
If you didn’t know already, I’m one of less than a handful of known survivors world-wide to overcome Invasive Aspergillus while on transplant immunosuppression medication. Due to the severe shortage of patients to survive this infection, my transplant doctor and and my transplant surgeon, Dr. Schilsky and Dr. Manuel Rodriguez Davalos, wrote an article that was recently published in the American Journal of Transplantation to assist other doctors and medical staff better understand the complications, risk factors, and symptoms of transplant patients. This article will hopefully facilitate transplant doctors to recognize abnormal symptoms of post-transplant patients so they can make a timely and educated diagnostic evaluation and possibly save more patient’s lives affected by Invasive Aspergillus. Thank you to Dr. Rodriguez, Dr. Schilsky, and the medical staff at Yale-New Haven hospital for everything they have done to save my life 🙂
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
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
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
Check out my first PSA (Public Service Announcement! The PSA was for the American Liver Foundation’s Liver Life Walk of Fairfield County. The walk will be held on Sunday, September 29th, at Harbor Point, in Fairfield County. Registration begins at 9 am!
I have been chosen as one of the Liver Life Champions this year along with the extremely adorable little girl, Charlie! This is the second year that my team “Just Say Mo” will be walking at the event, but this year, being one of the Liver Life Champions, it really means a lot to me to have your support!
“With respect to cerebral aspergillosis, there is a clear difference in outcome between immunocompromised and nonimmunocompromised patients, as shown in table 1. Among the 141 immunocompromised patients with cerebral aspergillosis, 140 died, a mortality rate of 99%. In contrast, only two of the 15 nonimmunocompromised patients died, a mortality rate of 13%.”(Denning, David W., “Therapeutic Outcome in Invasive Aspergillosis”, Oxford Journals. 23 September 1996. Pg 10.)
I often find myself researching online about a variety of things. Sometimes it is current events, or sports, other times I will check out what Justin Timberlake is tweeting or get caught in reading some trashy article about a Kardashian, but often times I get absorbed into reading about various things concerning my medical adventure this past year.
This past weekend while doing some periodic researching, I found a couple of very interesting statistics in regards to my medical diagnosis. If you know me at all, or have followed my blogging, you already know I survived a miraculous liver transplant one year ago this past May (of 2012).
After I successfully became a recipient of a new liver, you may also be aware that I had two major brain surgeries shortly after, and was once again a survivor. I defied every odd and belief presented to me and still to this day I am referred to as the “miracle child” by my doctors because honestly, there is no medical reason I should be alive today. My body which had no absolutely no time whatsoever to heal from the trauma of having a liver transplant just a couple of weeks beforehand to then be a victim to an immensely fatal and unheard of cerebral fungal infection is nothing short of amazing. You know I had the brain surgeries but do you know what for? Or why? Probably not, so I thought I would try to explain in using the least amount of “big doctor’s words” as possible.
When you have a transplant of any kind, your life has changed forever, including all of the little things that you commonly overlook such as where and what you eat/drink, your daily routine and habits that you just perform without thinking about. One new aspect of my daily routine that I had to incorporate after transplant was taking my immunosuppressant medications on-time, three-times a day. Yes, I have a weekly pill box and have my phone set on a timer so I can swallow my 20+ pills on-time each day (hey, that is down from 46 a year ago!) Nine of these pills I will have to take each and every day for the rest of my life. Six of the nine are called identified as “anti-rejection” drugs. What is an anti-rejection you might ask?
When you have a transplant of any kind, your body recognizes the new organ in your body as “foreign” and it’s natural response is to reject it just like it would any other foreign object in your body. In order to “accept” the new organ and not “reject” it you must take the anti-rejection medication prescribed by your doctor every single morning and evening on a 12-hour cycle. Once you have your transplant, you see your transplant doctor quite regularly, which mine is at Yale-New Haven, located about an hour away from me. You are scheduled for blood work and check-up appointments with your transplant team every week after your transplant for the first month so your doctor can closely monitor the level of anti-rejection medication in your blood. Too much of your anti-rejection in your blood can result in toxicity and too little can result in possible organ rejection. After the first month, you are reduced from getting blood work done to every two weeks, then to every three-weeks, then to every month, two-months, three-months, etc. A week from this Thursday I have an appointment at Yale to get blood-work and have my liver check-up in which this will be my “one-year” post-transplant check-up! After this appointment I will be “promoted” to only having to see my transplant doc every two-months. YAY!!
As I mentioned, after my transplant, I will be on anti-rejections for the rest of my life. Anti-rejections are classified as immunosuppressants. What is an immunosuppressant? An immunosuppressant is a substance that performs immunosuppression of (weakens) the immune system. Why would I need my immune system weakened? To not “reject” my liver. What does weakening my immune system do? A weakened immune system is more susceptible to infections or diseases that target the immune system.
Once I received my transplant, I was, and currently am on anti-rejections like all transplant patients are. My body was already extremely weak from just surviving a liver transplant, not to mention all of the medical complications including losing my pulse four times and being revived. My body, nor did I, have any idea that I was going to have to endure two crucial brain surgeries, that would once again perform some serious stress on my body without any time for recovery. Everything happened so unexpectedly where there was no time to sit down and realize how incredibly quickly everything was happening. It’s really not that far-fetched to to say my body was trying to recover from being run over by a truck, and personally I wouldn’t hesitate to say it felt like the truck ran over my slowly, backed it up, and ran over it a good two times more.
So why did I have two brain surgeries after my transplant? As I mentioned after my transplant I was very weak and also immunosuppressed. Also, to be noted, I was in the hospital for an extended period of time, exposed and vulnerable to all of the sickness and illness floating around in the air waiting to be caught. By being so weak, immunosuppressed, and surrounded by sickness, meant I wasn’t in the best position to defend myself from any illness that came within close proximity to me.
With that being said, aspergillosis, is the most common fungus present floating everywhere in the world, through the air in the form of dust and present in mold. Typically, when it is inhaled it is not a threat and is destroyed by our immune system. You can probably see where I am going here. After my transplant my body was so weak, it could not destroy the aspergillosis as it got into my respitory system, then into my bloodstream, then up to my brain. Convenient right?
So after my transplant I was experiencing the most wicked headaches that I can even begin to describe, seeing flashing lights, and hearing voices which don’t exactly compliment my pounding, non-stop headache. Obviously, something isn’t right, so the next step was to get an MRI of my head to see if anything could be found. After a couple of unsuccessful attempts to get an MRI because of my resistance from the extreme pain and inability to sit still, finally it was discovered that aspergillosis has invaded my brain in the left occipital lobe.
No one really can easily say or spell invasive cerebral aspergilosis, so it is just much easier to refer to is an an abscess or infection in my brain. At this point docs have realized I have a very rare, and highly fatal fungal infection in my brain while my health is fading at a very rapid rate. Me, myself, and I have essentially “left the building” if you know what I mean.
So just shortly after receiving a liver transplant in which happened so unexpectedly yet in impeccable timing, I am now diagnosed with this shocking and terrifying diagnosis that no one has ever heard of. Luckily for me, as I mentioned, I had left the building mentally, but my poor family had just been through a very tough week emotionally after losing my pulse several times, barely getting a transplant before I kicked the bucket, and now they are being told I have this notably rare, and drastically lethal infection in my brain where the only option is to be invasive, and even then there isn’t too much medical hope for survival?!? I mean come on, what is going on here, an episode of Grey’s Anatomy? Unbelievable.
Even though I was out of it, and hardly “awake” my body must have known to turn-on “kick-ass mode”. All I remember is that I had gone to sleep with a headache one night, and two-days later when I woke up the date on dry-erase board was several days later than from when I last fell asleep. I also had tubes in my mouth which I didn’t have in when I last remembered going to bed. “Mo, you had a brain surgery.” What? I have no idea what you are talking about. I feel my head and there is still hair. I feel around and there are these little metal things all down the middle of my head. Holy shit, what is this bling in my head? Staples. Holy shit, I really did have brain surgery.
It was explained to me, but it never really sunk in. I didn’t have much time for it to sink in because even though they had performed one brain surgery, a bit of the infection still remained. My neuro-surgeons had removed a good portion of the infection, but due to it’s location, there was a very serious risk that the second surgery could result in my inability to see, speak, or potentially be paralyzed, and that is only if I made it out of surgery alive. I was immediately put on a very aggressive treatment of hardcore anti-fungal agents.
My neuro-surgeon was very hesitant to operate a second time, but since the follow-up MRI showed no improvement, he would have no choice but to put the knife to my head for a second time. If I did make it out alive, the chances of blindness, speech loss, and paralysis were even greater than they were for the first brain surgery. The risks of this brain surgery was even greater than any of the other surgeries beforehand since it was going to be the third major surgery within a matter of five weeks. The next option, and only option at this point, was to perform a second brain surgery.
I was “aware” when I went into my second brain surgery, and I was “aware” when I finally awoke a day after the surgery. When I awoke, I was incubated and my neurosurgeon, Dr. Matouk, asked me my name. I wrote down “Mo” and Dr. Matouk was like, “No, that’s not right.” and my sister was like, “Yes, that’s right, that is her nickname that she goes by.” So then he asked me to read something from a far and write it down, so I did. He was in utter amazement. Within two-days after surgery, I was able to take a few steps and walk, slowly but surely hobbling along like a stiff piece of wood. Then I started progressing my physical activity a little bit each day and was doing “laps” around the ninth floor of the transplant wing. No one could believe it. I was ready to do more, walk more, but everyone was pretty much like, “let’s take it easy, you’ve been through a lot”.
“Take it easy”, has never really been a part of my vocabulary to be quite honest. By not taking it easy, and continually pushing myself physically and mentally each and every single day is one of the reasons why I have healed like I have. It would have been easy to feel and say, “poor me” “why did this happen to me?” But I didn’t. Instead, I saw where I was, I didn’t like what I saw or how I felt, and I said to myself, if you want to “look normal” again and not look like a lifeless patient who has been hit by a 16-wheeler, then you are going to have to work hard at getting better. Really hard.
I would think to myself, “Right now, physically, there is not much you can do, but be patient, and keep thinking you can do things Try a little bit further each day than you did the day before, and that is all you can do. If you can do that, while staying positive and not let the best of your frustrations get to you, you will be rewarded for your efforts one day.” So that is what I did, and this is where I am. I had a lot of people praying for me and my health, so many cards and letters and words of praise and encouragement. I was constantly motivating myself to get better so I could one day hopefully “be normal” again rather than be sick on the verge of demise. So far I am pretty pleased with how I basically stared death in the face and said, “Get the hell outta my way!” Seriously, I’ve got things to do, and people to meet, like Justin Timberlake : )
Today marks the one-year anniversary of my very miraculous liver transplant. The third of May was just one day of many last year in which I was tested mentally and physically so far beyond anything that has previously tested me in my 26 years of life combined. Today I fortunate enough to say that I am a living proof of a miracle. One of my favorite quotes says, “I’m not a one in a million kind of girl. I’m a once in a lifetime kind of woman,” which I think describes me quite perfectly.
For surviving transplant patients, their transplant anniversary is a very special day that will forever be celebrated. It is a magnificent and reflective day because it signifies the day you were given life, just like on the day when you were born and first entered the world, but it also celebrates all of the physical, mental, emotional, and spiritual challenges you had to overcome to survive.
I learned it is a recognized tradition of transplant recipients to celebrate the anniversary of their transplant as their “new birthday.” This third day of May 2013, I celebrate this one day, of one year, of hopefully many innumerable days, and many bountiful years with the most MOmentous, MOnumental, meMOrable gift I will ever receive (I love throwing those “Mo’s” in).
Like I said, I’ve already received the greatest gift I could possibly ever imagine, which is the gift of life. There is not many people in this world that can say they have experienced, endured, and persevered what I went through, at my age, or any age for that matter. Twenty-six/twenty-seven is an age where I was/and am old enough to appreciate what a second chance is. It is also an age where I am young enough to really go ahead and start my life fresh and set-out to do things in my life that I might have not done in the past, due to fear of failure. The goal is to achieve ultimate satisfaction, love, and happiness with myself and others.
Every birthday, you have the chance to make a wish when you blow out the candles, and there is one wish that I do have for this particular birthday. I will tell you that my wish does not involve money or things. It does not involve anything far-fetched or unattainable. But it does involve something so close here, so close to me personally; my family. While I would rather not go into family details I will leave you with the lyrics from U2’s epic ’90s song “One” in which my only wish, birthday or not, is that my family could embrace the lyrics of this song and once again be one single unity, one alliance, one family.
“And I can’t be holding on to what you got when all you got is hurt…
One love. One blood. One life.
You got to do what you should
With each other
But we’re not the same
We get to
Carry each other
Carry each other
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%.
6 hour+ IV of Amphoteracin B and sodium chloride each night for 7 weeks
When I was released from Yale’s care on June 11, 2012 I had to continue my treatment of Amphoteracin B intravenously. Amphoteracin B, is used to treat serious, life-threatening fungal infections, like the invasive aspergellus that was discovered in my brain post-liver transplant. Walgreens delivered this piece of you-know-what, retro-looking machine where it’s prime days were clearly back in the early 1980’s. So for 6+ hours/night (more like over 7 hours/night, I was hooked up to this god-awful machine that I named “Baxter” (the bastard). My treatment, for the most part was administered predominantly by my grandfather (whom mind you, has absolutely no medical training), he was raised on a farm in Canada and made it through the sixth grade. Not exactly a PhD in medicine. Awesome.
In an attempt to combat the extremely rare, and life-threatening infection in my brain (invasive aspergellus), my only option was to undergo a very aggressive antifungal treatment both intravenously and in pill form. Each day I took 12 pills/day of Voraconizaole, and in the evening, I was hooked up to that very out-dated IV machine, “Baxer,” for over six hours/day receiving the very undesirable Amphoteracin B pumping through my veins. Not only was it “Amphoterribile” I went on to call it, “Amphoterrorist” because it felt much like medical terrorism. The Ampho is probably not like any other IV you may be familiar to; it is very toxic and most people have a lot of difficulty tolerating Ampho and it’s side-effects.
There was somewhat a degree of stress and pressure lying in the Ampho treatment, because if it did not do its job, or if I was unable to tolerate it, then the end result was not favorable. Then you have to go on and consider the fact that my grandfather and I are by no means registered nurses (even though after this experience we are on our way). We have no prior medical “experience” and when you really think about it, that is a quite a bit of pressure to be given the responsibility to properly and accurately administer this IV, where mistakes could result to serious, serious consequences to my health, as serious as death.
When my family and I were first getting acquainted to hooking me up to “Baxter,” it was an utter disaster. The very first night home from the hospital, the visiting nurse came to show my family and I how to hook-me up to the machine. She didn’t leave until after 1:00 am and my grandfather stayed up until 3:00 am, five hours past his regular bed-time. I was in-and-out of sleep while the nurse was trying to hook-me up and give my grandparents the tutorial for what they would be having to do from here on out. Instead of doing a simple step-by-step visual she got us all so confused. When I say confused, I mean really, really confused. She herself was even became somewhat confused because the machine was so out-dated and complicated by poor instructions. Luckily, I have several family members nearby who are RN’s so they were able to come over several times in the first couple of weeks to get me familiar with the IV machine. The nurses in my family taught my grandfather how to properly set up “Baxter”, but even then, we still had our daily troubles with that obnoxious machine.
My grandfather, Poppy Emilio, had to learn how to work my IV of Amphoteracin B at-home each night.
My Poppy Emilio is a very hands-on, project kind of man, so when the IV came home with me, I think he saw it as a new project to keep him occupied. He was pretty much my nurse at home. It was cute how Poppy stepped up to the role. Every time he would flush out the line, when he was testing it to get the air out, he would pull the syringe back a little too far, and then when he pushed the syringe forward, the sodium chloride would shoot out of the tube quite a distance, and Poppy would go, “Ooops” and we would both giggle and I would say something like, “Woah, that was a good one!” My grandmother, Mum, would roll her eyes back and give Poppy this look that pretty much said, “you ass.” For some reason I found this pretty hysterical, and so then each time Poppy was flushing my line he would do this, I think just to make me laugh. He of course, would be laughing too and my grandma would just be shaking her head at both of us.
Poppy and I were starting to think we know how to work this damned machine, but just when we thought we had it all figured out, something would happen. Every. Single. Damn. Day! Poppy is a very smart man, he can build and fix almost anything including a house, so I’m thinking, sure he can work this IV machine, no problemo. Well, maybe not. That machine had all of us swearing up-and-down every single day of the seven weeks that I was hooked up to it. “Baxter the Bastard” is what I ended up calling it. Even though I will say “Baxter” was a big ole’ pain in the ass, I definitely bonded with Poppy Emilio while I was on the IV since we spent so much time together swearing at it.
The visual directions were on “Baxter” were very misleading, and even though we were shown on more than one occasion to work the IV machine, I don’t know how many times we still plugged the tubing into the machine in the wrong direction. Once I thought I was going to have a heart attack, we had it hooked up, I look over 10 seconds later, and I’m like “WHY is there BLOOD coming up the tube!!” Yeah, the picture on the machine is totally deceiving, it makes it appear like it is going in the opposite way that it should be going, and so instead of dripping my antifungal treatment in, it was sucking my blood up. I think it took several weeks for us to get that down without any mistakes, but after a few weeks under our belt, Poppy was a champ at working my IV, and a few weeks after that, I was doing it all alone by-myself (Nurse Moski in the hizzy, what, what!)
When we first were getting used to setting up the IV on our own, we made mistakes like the one shown above every single day.
During my treatment hours, I first received sodium chloride intravenously for two hours to ensure that I was hydrated, two hours of the Amphoteracin B, and then two more hours of hydration to flush out the toxins. At this point in time I was also having to drink a minimum of three liters of water/day! So add up the three bags of fluid/medication I was getting pumped with three more liters of water and you can imagine I spent a lot of time wheeling my way to the bathroom to pee. On top of that I was getting up to pee a minimum of 5 times in the middle of the night. If you include all of the time to switch between fluid and medication back to fluid, it was taking seven hours or more a night when we were first learning how to work the machine since we had so much difficulty. Seven hours a day, seven days a week. And you wonder why I called it “Baxter the Bastard.”
Each night before I started the Ampho treatment I had to take one Benedryl and two Tylenols (regular strength because since I have a new liver, I am limited on amount of acetaminophen I can take). Why did I have to take these before taking a medication? Because the Ampho is a monster of a drug. It is often referred to as having “Shake and Bake” symptoms for its shaking chills and fever, nausea, and vomiting.
“Amphotericin B is well known for its severe and potentially lethal side-effects. Very often, a serious acute reaction after the infusion (1 to 3 hours later) is noted, consisting of high fever, shaking chills, hypotension, anorexia, nausea, vomiting, headache, dyspnea and tachypnea, drowsiness, and generalized weakness. (“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
From mid-June through the first week of August, I was on the ampho at-home. I was only on it for so long, because I surprisingly tolerated the drug so well. Even though my body was “tolerating” it, there were plenty of horrible side-effects that I do not miss for even one second. For instance, it was summertime, 80-90 degrees outside and II was usually wrapped up in several blankets and still shaking because I was so cold. My body was aching, I was in a completely drowsy in a fog, in-and-out of sleep usually woken up for dinner that I could hardly even eat. I had absolutely no appetite but would try to eat at least half of my plate just because I knew I had to. I was drinking over 3 L of water a day, plus being pumped with two bags of sodium chloride and one bag of ampho each night, so there was not much room for food. Add on being extremely weak and utterly exhausted, it was a chore to do simple, minor things like going to the bathroom. Stairs? Ha. I couldn’t go up-or-down more than three stairs for over a month.
“Organ damage is also distressingly common, and patients who are dying of a systemic fungal infection can suddenly find themselves dying instead of kidney or liver failure.”(“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
The ampho treatment was no guaranteed fix, and cast aside the side-effects it was having on my body externally, it was also doing notable damage to my body internally. Ampho is a toxin, so it’s main function was to terminate the aspergellus, but mind you, it is still a toxin, so while it was killing the fungus in my brain, it was also damaging my kidneys. I had to get bloodwork 1-2 times per week in my early weeks of discharge to closely monitor my blood levels. While I was being treated on the Ampho, my kidney numbers began to steadily climb, as expected. The question for docs day-in-and-day out was, we have to get the fungus out of there, but how much Ampho is necessary to kill the fungus yet not enough to cause an even worse threat on the kidneys? Living with the aspergellus in my brain, even a tiny little bit, is and was not an option at all. It is fatal; it had to be gone. The kidneys, you can compromise their function somewhat in order to purposefully be treated with the Ampho, but my docs had to closely monitor, and make sure it wasn’t causing my kidneys to reach toxic levels. Finally, after about seven weeks on the Ampho, my doctors finally came to agreement that was enough of it to my body, and from there-on-out we would solely rely on the Voroconazole to do it’s thing and fight the remaining little bit of the infection.
Describing Amphoteracin B as “awful” is an understatement in my opinion. I wouldn’t wish that treatment on my worst enemy. It was what I had to do though. Even though it made me completely and utterly miserable for 6-7 hours a night, I sucked up all of my hatred for it, put my game face on, and got through it. The day the visiting nurse came to take the IV out of my arm and to stop the treatment was one of the most exciting days in my life. Even though I was really weak, you can be damn sure I found the strength to roll that thing outside and down the two front steps and put it in the grass by the drive-way so as soon as they visiting nurse pulled up, I was ready to shove that thing in the car. Yup. She was laughing and said, “You’re ready to get rid of this huh?” I was like, “You better believe it, get it out of here, I never want to see that thing again!”
It was so harsh and cruel on my body, but yet was necessary to saving my life. Dear Ampho, thanks for saving my life, but man, I really hated you and I hope we never meet again! While I’m pretty sure it is safe to say you probably never in your life have to go through the “Amphoterrorist” treatment like I did, I’m sure there is something in everyone’s lives that that just don’t want to do, or hate doing. You’re not going to be able to escape bad situations all of the time, but what you can control is your attitude. While Baxter was quite the bastard, and while I did feel like I was enduring medical terrorism, I am thankful for what it did for me physically and mentally. Physically, it did a great job of getting rid of the infection in my brain, that I wouldn’t have been able to live with. Mentally, this just added one more thing to my list of bad ass accomplishments. Liver transplant. Check. Brain Surgery. Check. Another brain surgery. Check. Eight weeks of Amphoteracin. Check. The killer is it hasn’t even been a year yet? And I’m healthier than ever! I just recently accomplished a 41-minute interval kick-ass workout and walked four miles yesterday! That is a little bit crazy to me considering the previous June I had to use a walker and couldn’t walk up or down a flight of stairs. It is hard to believe, even for myself, but what I can say is just believe you can do anything. Visualize it, see it in your head, and guess what? It is possible. Look at me. I’m a breathing, living, walking example that miracles are possible. They are not just going to show up at your door though. You might be presented with a miracle of your own one day, but everything about it isn’t going to come easy, you are going to have to grind, and work hard, but I promise it will all be worth it, you just have to believe!
“I am strong because I have been weak. I am beautiful because I know my flaws. I am a lover because I am a fighter. I am fearless because I have been afraid. I am wise because I have been foolish. And I can laugh because I’ve known sadness.” ~Unknown