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…
Thank you so very much for participating in the Liver Life Walk to raise funds and awareness for the American Liver Foundation again this year. On behalf of myself, a former liver disease patient, and the 30 million people who are currently living with liver disease, thank you for your support. There are over 100 types of liver disease that can affect men, women and children of all ages, so your support has contributed greatly in efforts to research, educate, and find ways to cure the disease.
It seemed like such a wonderful day! It means the world to me that you ladies went, wore my t-shirts, and represented Team Just Say Mo at the walk in my absence. I wish I could have been there, but with you ladies going it made me so incredibly happy! This year we raised a whooping $4,655 for the ALF, that is by far the most we’ve ever raised in the four times we’ve supported the walk!! Thank you to all of those that have supported me and my team over the years, I will never be able to thank you enough!
Much love,
Mo
#JustSayMo
Some of the 9-hole ladies at Tamarack Country Club walked at the Liver Life Walk in Stamford on September 27th.The 9-holers and my second cousin Maryann at Commons Park Harbor Point in Stamford, CT for the 2015 American Liver Foundation Liver Life Walk.Team “Just Say Mo” over the years, 2012-2015.
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.
Mark Cuban came up to me and said, “Hi Mo. Mark Cuban. Mike has told me so much about you…” at my best friend Allison Micheletti’s wedding in Dallas, TX in September of 2013.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.
On May 3, 2012 I had my life-saving liver transplant from an anonymous organ donor.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.
After the second brain surgery at Yale to remove a fatal fungal I acquired in my brain as a result of a weak immune system post-transplant.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.
Top: Before my liver transplant in May 2012. Bottom: April 2013, a bridesmaid at my best friend’s wedding, and Sept 2013, cutting the ribbon to kick-off the 2013 the American Liver Foundation’s Liver Life Walk in Stamford, CT.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.
The 2014 Transplant Games of America will be held in Houston, TX July 11-15!
Dearest friends, family, and supporters,
I am overwhelmed with gratitude and excitement to announce that I will be participating in the Transplant Games of America in Houston, TX, July 11-15! I will be representing the Transplant Team of Connecticut in the Golf, 5K and two other sporting events of my choice! This life-saving organ donation has given me an opportunity to lead a life with meaning and purpose, honor those affected by transplants, and inspire others to save lives through the generosity of organ donation.
Participating in the Transplant Games just two years after my miraculous transplant and brain surgeries is a dream come true! I am so excited at this amazing opportunity to travel, meet fellow transplant recipients and donors, and get back to my athletic roots! In order to make this dream become a reality, I need some serious help fundraising. This year it will cost an estimated $50,000 to send the Transplant Team of Connecticut to the games. In order to afford this, I will be setting up a personal donation page to raise a goal of $2,500 for my participation.
If you are interested in donating so I can compete at the Transplant Games of America, please visit my GOFundMe page at http://www.gofundme.com/JustSayMo
The Transplant Team of Connecticut, Inc. is a tax-deductible, 501c(3) non-profit organization. Personal checks can be mailed to: PO Box 1073 SMS, Fairfield, CT 06825 with the memo: “In support of Monique Gesualdi.” (Tax ID#08-0778187).
Thank you so much for your continued support and I CAN NOT wait to make you proud at the Transplant Games in July!
“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James
Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive. Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”
Let me give you a little background information. I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive. There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital. I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career. What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.
My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom. I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all. Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list. Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!
Shortly after my transplant, I exhibited some serious cognitive dysfunction. I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again. I began experiencing painful and distracting visual sensations, such as: colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!” Excuse me? What did you say? “You had brain surgery!” I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp. There was absolutely no other thought in my head at the time except, you’ve got to be effin’ kidding me?
Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had brain surgery? What for?I wondered. Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on immunosuppression in Greenville.
It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that. My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain. This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.
The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night. Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled. Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.
Top photos: Post-transplant, pre-brain surgeries, May 2012. Bottom photos: Post-transplant, and two craniotomies (brain surgeries).
When I came back to consciousness the next day, there were doctors and family standing all-around me. “What is your name?” I was asked to write. My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique. He asked me to read something from across the room and write it down, so I did, without any problems. My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read. Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J). Hey, well at least they knew they didn’t cut out my sense of humor during surgery!
Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments. You’re probably thinking, wait you got excited to go to a doctor’s appointment? Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?
Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor. Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection). As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back. The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily. The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.
My brain scan, 3/13/14 at Yale-New Haven Hospital. While I anticipated being taken off the Voriconazole, what I did not expect was my MRI scan to look like this: HOLE-y MO-y! I showed my grandma and her reply was, “Now I know what is wrong with you.” She’s quite the comedian, haha.
That sounds pretty serious, but I’m not scared at all. This June will be two-years since I survived my brain surgeries to remove the aspergillus. People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is unbelievable. Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!
I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it. My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation. I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.
One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life. For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well. If I didn’t get sick, I probably would have never changed my ways. The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.
In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire. My sickness wasn’t a curse; it was a blessing in disguise. It saved me from own worst enemy: myself. I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found 🙂
“If you don’t get lost, there’s a chance you may never be found.” ~Unknown
“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
In May (2013) I won the Kalley Award for “Best Speech” for my Icebreaker speech at Toastmasters
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.
Trying to get my golf game back!
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.
ING Hartford Marathon with my sister! Desiree ran her first full marathon, and I ran the 5K (well, partially. I ran partially on the half marathon by accident, oops).hope you learn to believe in yourself and everything you do. If you believe it, you can achieve it, no matter what it is you are up against, and that includes your own worst enemy sometimes, yourself!
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.
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!
This was my speech prepared for the Liver Life Walk Kick-Off Event, at Harbor Point in Stamford, CT.
As Rocky Balboa once said, “You, me, or nobody is gonna hit as hard as life.”
I have been an athlete and seemingly healthy all of my life. I graduated with my BA in Communication Studies in 2007 from Furman University, in Greenville, SC on a full-ride to play Division 1 Women’s Golf. In March of 2012, five years later, I was still living in Greenville, SC in the midst of making a transition to St. Augustine, FL. I know plans can sometimes change suddenly, but I could never in my life envisioned how drastically my plans were about to change. No one could have!
In March of 2012, I was diagnosed with end-stage liver failure and I somehow had to digest that I might only have a couple of months to live and that my ONLY hope of survival was in getting a liver transplant. I never imagined having to deal with anything of this magnitude at only age 26, so I called my Aunt Caryn, because she always knows the right thing to say to me. “Aunt Caryn, I have been diagnosed with this rare disease that only 1 in a million people get, my liver is failing, and I need a liver transplant to survive.” Calmly, she responded, “Monique. Only one in a million people can play golf as well as you. You are going to have to take that focus you learned from golf and use it to getting better. You’re going to need a strong mind because you’re going to be fighting for your life.” My aunt said she would be there for me, and we could accomplish anything together, so from that moment on, I put on my game face, ready to brave this life-threatening challenge as best as I could.”
Everything happened so rapidly from there on out, and within a week my aunt and my cousin Rocco flew down from CT, picked me up in my car in SC, and we drove back up to CT. A week after I arrived in CT, I had my first liver evaluation at Yale-New Haven and was admitted to the transplant program on the spot. Within one week of being admitted to Yale hospital, I suffered internal bleeding, and I lost my pulse four times.
While the internal bleeding almost killed me, it did shoot me to the top of the transplant waiting list. The average wait time is 361 days for a liver, but on May 3rd 2012, not even two days after I was officially put on the transplant waiting list, I was a recipient of a matching liver! It was a phenomenon, but even before I got the chance to really celebrate this miracle, I had developed an extremely rare, extremely fatal fungal infection in my brain called invasive aspergellus. Invasive aspergellus in the brain has nearly a 100% mortality rate for immunosuppressed patients, so my only option for survival was to have a very risky brain surgery to remove the abscess. The surgical team was unable to remove the entire abscess out on the first attempt, so almost three weeks later I was under the knife again for an even riskier brain surgery. Imagine having three major life-saving surgeries in a matter of five weeks’ time–my body felt like I had been plowed over by a speeding Greyhound bus!
After spending most of the spring of 2012 in the hospital, I was finally discharged on June 14th to my grandparent’s house. While this was a huge day for me, I was still not off the hook, as a trace of the infection remained. A PICC line was put into my arm, so for 6+ hours a night, 7 days a week, I was on a very aggressive IV treatment of an anti-fungal agent called Amphotericin B. The Ampho is a very toxic agent, and my kidneys could only tolerate the drug for 7 weeks before it was causing too much harm. FINALLY, on August 3, 2012 I had the PICC line removed out of my arm and it was adios Ampho and hola road to recovery!
My family was informed that even if I did survive the multiple brain surgeries, there was a pretty good chance I could come out of surgery deaf, blind, paralyzed, or worst of all, dead. I definitely didn’t come out deaf, (even though sometimes I might wish I was deaf so I wouldn’t have to hear my loud Italian family, JK J). I am far from paralyzed. With a lot of hard work, I went from being bed-ridden and extremely weak to running my first 5K in May in 33:44:66. I am not completely blind. I did lose my peripheral vision to the right in both of my eyes from my multiple brain surgeries and can no longer drive a car, but that hasn’t stopped me from driving a golf ball as I just recently participated in the American Liver Foundation’s Charity Golf Tournament in July, where I won the long drive contest for the females. A few days later I shot a round of 80 from the white tees at Candlewood CC. Most importantly, I am not dead. My body, my mind, my emotions, and my soul went through so much in such a short period of time, but I have worked very hard physically, mentally, emotionally, and spiritually to get to where I am today, and because of that I am very much alive–perhaps the most alive and healthiest I ever been in my life!
Somehow, to medical disbelief, I am a survivor. Why? Well I don’t know exactly why, but I can tell you this. I had a very impressive medical team at Yale who was doing everything within their power to make sure I was leaving that hospital alive. I can’t go without saying I have the most amazing friends who even though most of them live 800 miles away from me, they checked in on me daily, sent me cards, and flowers, and gifts, and some of my friends even came to visit me from afar. My family was incredible. Every single day out of the 52 days I was at Yale, at least one (but usually more than one) member of my family made the hour long trip to Yale to be with me. I honestly wouldn’t be alive today if it wasn’t for my aunt Caryn and everything she has done for me, especially instilling in me that those one-in-a-million odds I was labeled with didn’t mean one-in-a-million victim, it meant one-in-a-million survivor.
Throughout this whole journey I had so many people believing in me. When you have an army of people supportive of you, constantly telling you that you are a fighter, that you’ve got this, you start to believe it. I was like Rocky Balboa, only I was in the ring battling death. Round after round I kept fighting, and fighting and like Rocky, every time I got knocked down, I got right back up. The verdict may not have ended in a knock-out, but what is most important is that I prevailed, and I am a survivor.
One year ago was the true beginning of my recovery, and now, by just looking at me, you would no idea I had a life-saving liver transplant or survived a deadly infection in my brain! I am living proof of a miracle, but that miracle wouldn’t be possible without the advances made in medicine over the past couple of decades. One-in-ten Americans (30 million) are currently living with liver disease, and anybody can be that “one,” and you never know when it could be you. That is why it is very important for us to come together and become educated about liver disease, raise awareness, and most importantly support the American Liver Foundation and Team “Just Say Mo” at the Liver Life Walk of Fairfield County! (For for more information about supporting me and my team “Just Say Mo” at the Liver Life Walk this year please visit this link.
I want you to remember, “Life ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. ” ~Rocky Balboa
“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.)
MRi pre-cranitomies (top) and post-craniotomies (bottom). The white identifies the infection, invasive aspergillus.
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.
Staples in my head after my first brain surgery. That wasn’t so bad, with a little glitter I might look like I fit in for a Ke$ha music video. Bling, bling.
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.
For my second brain surgery they shaved the hair down the middle of my head and my head and stitches were used instead of staples. This look, which I called the “Reverse MO-hawk” was a lot more noticeable than my staples.
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.
Encouragement, love, support, prayers, and positive attitude is what got me through.
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 : )
In the hospital post second brain surgery, June 2012 vs. May 3, 2013. I don’t even believe it sometimes.
April is Donate Life Awareness Month! Don’t forget to wear blue and green on April 19th!
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.
Dream. Believe. Donate Life.
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):
ORGAN
MEDIAN NATIONAL
WAITING TIME
Hearts
113 days
Lungs
141 days
Livers
361 days
Kidneys
1,219 days
Pancreata
260 days
Intestine
159 days
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.
With our mayor, Mayor Boughton (Danbury, CT) at City Hall with the Donate Life flag which is raised for the month of April for Donate Life Awareness month (Left to Right: Mayor Boughton, my aunt Dana, me, my aunt Caryn, my grandmother Rose).
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.”
There are many other myths, that you probably don’t know, but I will leave that up to you to research. Below are some statistically information about organ donation and transplantation that you may find interesting, which you can find on this website: http://www.organdonor.gov/about/organdonationprocess.html#process6
“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%.
Grateful: a) feeling or showing an appreciation of kindness; thankful b) expressing gratitude Satisfy:a) to make happy, to please; b) to gratify to the full; appease
Overall, the last two months have been, for the most part, pretty busy and entertaining for me. After the holidays were over and January rolled around, I went to St. Augustine, FL to visit my mom, step-father, and to surprise my little sister for her 25th birthday for about a week. While I was there, my grandparents came to visit, and then I rode with them back to their winter home in Fort Meyers and stayed an additional week. The following weekend after returning from Florida, I went up to Boston for a short weekend to spend time with a few of my friends from college who live decently close to each other. The weekend after that I went to the Mohegan Sun Arena in Uncasville, CT and saw Bon Jovi put on a 2-hour kick-ass live show…for free! I can definitely agree that January and most of February were rather eventful months for me. The last few weeks, on the other hand, have been more on the dull and uninteresting side. I am not complaining, just stating facts.
I’ve been basically confined to the house with sporadic modes of transportation available to me here-and-there (depending on my family member’s schedules’), and it has begun to start to put me a little-bit “on edge”. I absolutely believe I do a great job of finding ways to entertain myself and keep my mind busy. I am also rather physically active, circumstances considered, which keeps me entertained frequently. Still, it is unfortunately starting to wear away at me a bit; not having my independence that is.
I have noticed I have been getting very frustrated. Frustrated that I can’t drive. Frustrated that when I need to go somewhere that I need to find a ride. Frustrated that I usually can’t be alone when I’m shopping, or alone at all sometimes. Frustrated by all of the brotherly teenage bickering and yelling and farting. My only “escape” is the room I stay in, but it is still not fully excluded from everything considering it is household public-access to the mini-office, work-out, and playroom.
This blog is not about me bitching up a fit. This blog is about me realizing and sharing the true difference between what being grateful and being satisfied is. Yes, I am frustrated that I cannot drive, but I am extremely grateful that I have enough of my vision field to still do many things. Yes, I get frustrated always having to depend on a ride, but I am grateful that I have family that is willing and kind enough to drive me around. Yes, I get very annoyed when the boys are loud and fighting, and when there never seems to be a moment of “fresh, clean air” while either of them are in the room if ya know what I mean, but, still, I am grateful to have them as my “brothers”. Yes, I am frustrated that I used to live independently and now I feel like I am somewhat re-living my early teenage years, but I am grateful that my family has allowed me to be a part of their home, grateful to call them my family, and above all, I am grateful to be alive.
Today in the shower, as my mind was racing, “What is wrong with me? What is your problem Mo? Why are you on such a short-fuse so much lately? C’mon get it together Mo.” I kept thinking and asking myself questions, and thinking some more. I came to the conclusion that I am gratefulfor everything and everyone in my life, butI am not satisfiedwith my life and that there is a difference.
Well, what is the difference between being grateful of your life and being satisfied with it? The difference, for me at least, is I am so very appreciative of my life and that I have been given a second chance to make it satisfactory and fulfilling, but I am currently not fully satisfied with it. Yes I am alive, but I want to be living;not trapped.
Not being able to drive does restrict my freedom and independence more than I would have ever thought, but I have been making-due. The problem is I don’t want to “make-due.” That has never been a mind-set of mine, and I don’t want to be content with “making-due.” Ever.
I dream of being on my own, having a career, living in my own house, driving my own car, etc. Not that I want to be alone all-of-the-time, I just dream to simply have my independence back. I’m 27 and I live with my aunt, uncle, and cousins and the closest thing to my old “Mo-bile” now is riding shot-gun in my grandma’s Toyota Camry…with my grandma. The luxury of “leaving and going as you please” doesn’t seem like a luxury until you have it suddenly snatched away from your feet. I know “independence” is what I want, but how do I get it? I went to the mall the other day and I didn’t see anything on sale for “Independence.” Purchase now and your first 3 months are free!” Haha, I wish.
So, since “independence” isn’t for sale, how am I going I take my dreams and put them into an active game plan? This can be tricky for my particular situation, because some of my goals are somewhat dependent on my medical progress, doctor’s diagnoses, etc. My goals aren’t like, “I want to lose 10 lbs.” or “I want to run a 5K.” While some of my goals are indeed like those, the ones I am talking about now are much different, such as, “I want to be able to see” and “I want to be able to drive”. The only control I really have with goals like these is to just continue keeping-up with all of my doctor’s appointments, medications, staying healthy, and thinking positive. After that, I am not sure if there is anything else I can do, but just patiently wait.
I often wonder what other people would do and how they would react if they were in my shoes. The reason I wonder, is because I am constantly in conflict with myself, and always looking for more, and I wonder is that normal or not? Then I question should I be satisfied with how things are? Is it bad that I am still not yet satisfied with my life? With all said and done, I did get a liver. I survived two serious brain infections. I am healthy. I am alive. I have wonderful friends and family. Is it selfish of me, that I want more for my life than just being grateful and awake each day? I want to be satisfied.
I would be satisfied if I was living every moment to the absolute fullest I could each day. I know that isn’t possible due to time and monetary restraints, but this doesn’t stop me from trying. I will steadily plug away each day at my goals until I get to where I want to be. The problem is, I am never completely satisfied with where I am at, and I always want more. Mo, always wants mo’–I am always trying to out-do myself in whatever it is I do. I am my own worst enemy, and whether that is a good or a bad thing, I have yet to determine.
In one way, I believe it is a great thing, because I’m always trying to work harder, to make things better than they were before. Settling is not in my vocabulary-for anything, or anybody. On the other hand, sometimes I think I’m ready to do things, but my body is not, I push anyway, and I end up setting myself back a tiny-bit further from where I began. It is vicious cycle of balancing, and that is something I have gotten much better at, yet still have plenty of room for improvement.
The truth of it all is I really don’t know what will make me truly satisfied? Will I ever be able to get to a point where I can say, “That’s it? I am here and this is the best life can possibly be.” Who knows? But ya know what? That is okay because it keeps me continuously working hard at my goals. When I’m working hard at my goals, trying until I can’t try any more, that is the one thing that I do find satisfactory in my life. That feeling that I’ve done everything I could possibly do, leaving no room for excuses. It is a hard feeling to get to, especially with me since I am never satisfied ; )
“People who are unable to motivate themselves must be content with mediocrity, no matter how impressive their other talents.” ~Andrew Carnegie, American Industrialist & Philanthropist
“Motivation is what gets you started. Habit is what keeps you going.” ~unknown
Michael Jackson took the words right out of my mouth….
“I’m Gonna Make A Change,
For Once In My Life
It’s Gonna Feel Real Good,
Gonna Make A Difference
Gonna Make It Right . . .”
“I’m starting with the Mo in the mirror,
I’m asking her to change her ways
No Message Could Have
Been Any Clearer
If You Wanna Make The World
A Better Place
Take A Look At Yourself And
Then Make A Change…..”
Me, jaundiced, hooked up to my IV patiently waiting with my cousin, Courtney, for a match for a liver transplant in very late April 2012 just a few days prior to my transplantLooking and feeling a million times better ready to celebrate the holidays with my family early December 2012 a short 7 months later
Ever since I was hospitalized (first in Greenville in March and then at Yale in April), I have had no choice to make so many drastic modifications to my lifestyle in order to be healthy and stay alive. A transplant results in no drinking, no smoking, no raw sushi, and no salad bars just to name a few restrictions. I continually work out, and I am now fully dedicated to adhering to a gluten-free diet (in result of being diagnosed with Celiac Disease).
After my transplant and brain surgeries, I was having to swallow 46 pills a day, 46! Excuse my French, but holy $hi+ that is a lot of pills! I now am currently down to 29 pills/day, which is significantly less, but I still feel like an 80-year old doing organizing my weekly pills in one of those Monday-Sunday pill containers.
Swallowing a meal-full of pills several times-a-day, with all of the side-effects, on-top of feeling like my body had been run over by a16-wheeler was not fun. I could hardly perform simple tasks that you would never even think twice about doing like: walking, going to the rest-room by myself, getting my shoes/socks on without help, showering without sitting in a chair, without being constantly babysat.
One of my favorite lines in Adam Sandler’s “Big Daddy” is when Adam’s adopted son yells, “I wipe my own ass! I wipe my own ass!” The thought of this scene makes me chuckle to myself, and let me tell you why: when I was confided to the hospital bed (attached to what felt like enough wires to light up a Christmas tree), I couldn’t use the rest-room as I pleased. If I had to go #2, I had to buzz the nurse, wait for someone to bring me a bucket, do my thing, and then get my ass wiped, not by me, all while laying in bed (I am very good at back bridges when I do my workouts now haha). Talk about feeling violated, and privacy? Ha, I have lost all concept of what that is after my 52 days spent between the ICU and the transplant floor.
I endured a total of 71 days of hospitalization in the year 2013 which I later reflected on. I missed out on most of the spring starting in mid-March going through the end of April, the entire month of May, and half of June from the outside world being locked up in the hospital (except for a brief two-week hiatus when I moved from Greenville, SC to Danbury, CT). While it was a great feeling to be out of the hospital, I wasn’t exactly “free” and nowhere near being back to “normal”. I am not allowed to drive because of my visual field impairment which is not expected to come back (I have lost my peripheral vision in both my right and left eyes to the right, so unless something is directly in-front of me I can not see anything to my right-side).
My hair is finally filling in from where it was shaved in a line straight down the middle of my head for surgery. It is no longer falling out, which is very awesome to not have to pull handfuls of hair out of the drain every day. Since it is filling in, I no longer have to sport what I named a “Reverse MO-hawk.” I have gone from being completely independent and living on my own, to moving into my grandparent’s house. My grandparents are snow birds, so as they flocked to Florida for the cold winter months, I moved-in with my aunt and uncle and their two teenage boys, my cousins Robby and Rocco. I love my cousins, they are like my little bros, but if Call of Duty was never invented I think I would totally be okay with that.
My friends live in various states across the country, and I have no one besides my family here in Danbury. When I say no one, I mean no one. I love my family dearly with all of my heart, but sometimes I just want to be able to hang out with my friends, go out for a drive to clear my mind, or go to the store alone. It are those “little things” in life that I can no longer do anymore that I long desire.
I never realized how valuable those little things were to me, until they were no longer readily accessible to me. While my recovery is improving gradually and I am feeling much better, it still does not dismiss the fact that I am not exactly living the lifestyle of a normal mid-20-something year old.
The first few months after I was discharged, I wasn’t allowed to be home alone. There was a chance I could have more seizures, or fall, or that something else could easily go wrong with me. It is nice to have people around and be there for you, but everyone needs a breather by themselves every once in awhile; it is too often I lock myself away to catch a “breather” away from everyone else.
Although I’ve had to do a complete 180 with my life, I don’t wish to go back to the way I was living, not even for one second. I was going down a dead-end road, and wasn’t paying attention to the signs to tell me to pump the brakes and turn around. Sure I was having the time of my life, but deep down I wasn’t really happy with myself. Each day felt unfulfilled and I was yearning to do something with my life that was actually admirable. I wanted to feel proud of myself like I had once felt in my junior golf and college days.
Now, I finally am proud of myself again. I look in the mirror each day and I am in shock. Each day I see myself and when I see the “Mo in the Mirror” I’m like, “Wow, Mo, you’ve come such a long way, in such a short amount of time.” That feeling that I get when I see the new, improved, healthy Mo is what gives me the “Mo-tivation” to keep trucking along and give each day everything I have to offer.
Besides doing physical therapy I keep myself active each and every day. My over-anxious-self tried doing the Insanity work-outs within the first two months of being discharged, and that was probably the most idiotic set-back of my whole healing experience. Even though my mind was ready, my body was no where near being ready for that kind of physical activity and movement. So after that set-back and spending the last few months trying to heal from those injuries, I now finally feel SO much better and I can now begin to increase my physical activity gradually.
On Sept. 30, 2012, I participated in the Liver Life Walk held in Stamford, CT and walked 3-miles, which is my farthest recorded walking distance since being discharged from Yale in June. A few days after the Liver Life Walk, I felt like a small car ran me over, but that is definitely better than a 16-wheeler! My legs were giving me large amounts of trouble, so unfortunately, I regressed once again. I continued out-patient physical therapy and ended that treatment in early November. Now, on my own, I work out in my aunt and uncle’s house with their treadmill, small weights, resistance bands, swiss ball, and use my own body strength with certain exercises and yoga poses. I walk a minimum of a mile each day, and sometimes I go up to 2.5 miles. My times have continued to improve as I continue to get stronger and gain more endurance. I incorporate a minimum of 100 crunches or similar type exercises to strengthen my core because that is very important to getting my entire body stronger.
I started off doing around 25-minute miles. I didn’t really keep track of my times at first because I was so slow–“Slow-Mo” you could call me, ha. Now I have started to keep track, because comparing times is really the only way to truly know if I am getting quicker or not.
Two-weeks ago, I did a 19:00 mile, two days after that I did it in 17:52, and the day after that I pushed myself really hard and did the mile in 14:09! Of course that is not an awesome speed or anything but I did shed over three-minutes in one-day, and with these chicken legs and everything else considering, that is a pretty big accomplishment! I left the treadmill with a big smile and felt pretty proud of myself, ready to set my next mile mark for 13:30.
On January 9th, 2013 I ran the mile in 10:39! I was so excited and proud of myself. Yes, my legs did hurt and I had to take-it-easy for a few weeks after that, but it was very much worth the gratification of kicking so much ass!
Ran the mile in 10:39 just 7 months after discharge in June when I was hardly able to walk from one side of the house to the other
Everyone is different in what motivates and inspires them to succeed, but I have found that my “mo-tivation” comes from seeing the results. When you can actually see a difference or a change for the better, that makes you feel like all of the hard-work you put-in is actually paying-off; and that is a damn good feeling. When you can look at the clock and see your times have gone down, or you can see in the mirror the physical changes taking place, that is fulfilling. I don’t know if it is the same feeling for you, but it gives me the inner drive to set goals and work harder at attaining them. I will work until I reach that goal, and then once I reach it, because I WILL reach it (and not let anything stop me), I then set higher goals to achieve.
I believe if you have a fierce mentality, you believe in your goal, and put the work into it, you can do anything you dream of. You have to believe in your goal, but most importantly you have to believe in yourself. When you can get to that point, the work won’t seem like work, it will be overshadowed by your strong desire to succeed, and you will succeed.
One thing that I have found that is critical to achieving almost anything, is having patience. I am half-Italian and my last name is Gesualdi, so being patient isn’t exactly a characteristic that comes naturally for me. I have never really been patient in my life, but somehow, somewhere, during my ill-times, I dug very deep, the deepest I hope I will ever have to dig again, and found this patience with-in me that I never had before. My family was shocked. I was even shocked. It came out of nowhere. I don’t really care where it came from, but it was there, and it was crucial to saving my life. Without that patience I could have so easily given-up each and every time a doctor gave me negative news that pretty much suggested I had a greater chance of dying than living. Like I’ve said before, I firmly believe in mind over matter, and that is what got me through.
If you want to make a change, you have to start with yourself. It feels real good, it makes a difference, and it makes it right. That’s why I want you to know, I started with the “Mo in the Mirror”, and if I can do it, so can you, and so can anyone, you just have to believe you can 🙂
Just Say Mo Foundation 