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…
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 🙂
“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.
“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.
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.
Today marks the one-year anniversary of my very miraculous liver transplant. The third of May was just one day of many last year in which I was tested mentally and physically so far beyond anything that has previously tested me in my 26 years of life combined. Today I fortunate enough to say that I am a living proof of a miracle. One of my favorite quotes says, “I’m not a one in a million kind of girl. I’m a once in a lifetime kind of woman,” which I think describes me quite perfectly.
For surviving transplant patients, their transplant anniversary is a very special day that will forever be celebrated. It is a magnificent and reflective day because it signifies the day you were given life, just like on the day when you were born and first entered the world, but it also celebrates all of the physical, mental, emotional, and spiritual challenges you had to overcome to survive.
I learned it is a recognized tradition of transplant recipients to celebrate the anniversary of their transplant as their “new birthday.” This third day of May 2013, I celebrate this one day, of one year, of hopefully many innumerable days, and many bountiful years with the most MOmentous, MOnumental, meMOrable gift I will ever receive (I love throwing those “Mo’s” in).
Like I said, I’ve already received the greatest gift I could possibly ever imagine, which is the gift of life. There is not many people in this world that can say they have experienced, endured, and persevered what I went through, at my age, or any age for that matter. Twenty-six/twenty-seven is an age where I was/and am old enough to appreciate what a second chance is. It is also an age where I am young enough to really go ahead and start my life fresh and set-out to do things in my life that I might have not done in the past, due to fear of failure. The goal is to achieve ultimate satisfaction, love, and happiness with myself and others.
My cousin Courtney and my aunt Caryn at Yale-New Haven visiting me during my 52 days at Yale.
Every birthday, you have the chance to make a wish when you blow out the candles, and there is one wish that I do have for this particular birthday. I will tell you that my wish does not involve money or things. It does not involve anything far-fetched or unattainable. But it does involve something so close here, so close to me personally; my family. While I would rather not go into family details I will leave you with the lyrics from U2’s epic ’90s song “One” in which my only wish, birthday or not, is that my family could embrace the lyrics of this song and once again be one single unity, one alliance, one family.
Just a small part of my family that came to visit me in the hospital last May. Whether they are in any of these pictures or not, I love you all.
“And I can’t be holding on to what you got when all you got is hurt…
One love. One blood. One life.
You got to do what you should
One life
With each other
Sisters
Brothers
One life
But we’re not the same
We get to
Carry each other
Carry each other
Last month I had my check-up with my infectious disease doctor at Yale-New Haven, Dr. Topal. While all of my doctors are very important to me and my health, I consider my check-ups with my infectious disease doc to be one of my most important because the appointments with him are in regards to the life-threatening abscess I had in my brain in 2012, called “aspergillus fumigatus”. While that infection is no longer present due to the aggressive anti-fungal treatment I was on, I am still currently taking 12 pills/day of a very, very expensive medication ($4,400 a month) just to ensure that it does not return.
I really love my infectious disease doctor, Dr. Topal. Besides being so kind, you can tell he truly cares about his patients and seems to take the extra steps necessary to ensuring his patients are well-taken care of. For instance, each time I’ve had an appointment, Dr. Topal is the one himself typing up the summary of my visit, not just relaying information to the nurse for her to type it up. Dr. Schilsky, Dr. Rodriquez, and Dr. Assis, I have seen do this for me as well, and it is something I definitely notice and admire about them and their commitment to their profession.
The morning prior to meeting with Dr. Topal, I had an MRI taken of my brain to see if there had been any changes since my last MRI, taken five months beforehand. We unfortunately had to deal with some insurance issues, and my scheduled 9 am MRI wasn’t actually taken until much later. I finally had my MRI taken a little after noon, barely in time to get to Dr. Topal’s office located a couple of miles away at the Yale-New Haven Physicians Building.
After getting my vitals checked and sitting and waiting with my grandmother, Dr. Topal strolled in with another young doctor, I assume an attending. He briefly asks the basics, “How are you doing? How are you feeling?…..” I respond, “I’m great, I feel great”, because I did; and I do. “Well you look amazing.” “Thank you….”
Then Dr.Topal and I get into talking about how he had so much trouble with getting the MRI approved, and how he had to personally call and speak to my insurance to tell them how important the MRI is. I mean, it is an MRI of my brain. On-top of that, it is to make sure I still don’t have any remnants of a fatalinfection in there. No big deal right? I’m pretty sure that it is the most important MRI that I can possibly get at this point in time, so I do not know why the insurance always has to be an ass and make it so difficult each and every time to approve what is clearly without a doubt a very important MRI.
Sometimes, I really don’t understand insurance companies. Every single month, I have a very difficult time getting my medication on-time or approved without a hassle and having to make two or three different trips to Walgreens, because they my insurance only approved “partial” amounts. I take 12 Voriconazole pills/day. There are 30 pills in the bottle. Do the math, I go through the bottles like crazy. My pharmacy is approximately 10-15 minutes away, I don’t drive, it’s just a monthly pain-in-the-ass that my family and I have to deal with. But why? It’s not like I want to take a medication that costs nearly $4,500 a month? It’s not like I enjoy having to swallow an additional 12 pills/day on top of all of my anti-rejection medications and vitamins I now have to take after having my transplant. I don’t know many docs that would personally speak to the insurance, especially so promptly, but Dr.Topal did, got everything straightened out with my MRI, and I was highly impressed.
Anyway, after dealing with that inconvenience, Dr. Topal reminded me of my last visit several months ago, and my last MRI showing the aspergillus was no longer there, but there had still been lots of swelling. In comparison, this most current MRI (that I took earlier that morning) showed no abscess, and that the abscess, (the size of two finger-nails), had filled with fluid, with no edema (swelling) around it. I asked if that was normal, to have fluid fill where the abscess was, and he said yes, completely normal.
Dr. Topal went on to say I used to be anything but boring, I’m truly a “miracle child”, and that today my results were “boring,” which is a very good thing, and that he couldn’t be any happier with the results! Doc also said I’m one of only a handful of people since the early 2000’s to have survived and doing well with that type of fungal infection in their brain (invasive aspergillus) and post-surgery treatment. Most people don’t make it out of the hospital because the infection is so aggressive if not recognized and treated very aggressively immediately. With that being said, there is not much research to serve as a guideline as to how much medicine or for how long to treat me with. As long as my body is tolerating the Voriconazole, (which it is currently tolerating extremely well), I will continue my treatment of Voriconazole for an unknown period of time as a preventative measure so the aspergillus doesn’t return. Dr. Topal then went on to say he “doesn’t want to worry about me,” and so that is why they are keeping me on the Voriconazole for an extended period of time. That’s fine by me, because I surely don’t want to worry about me either, and if the aspergillus came back in my brain, that would be something very worrisome to not just me, but my doctors as well. Invasive aspergillus is a vicious monster that hopefully I have slain forever and ever.
MRi pre-craniotomy (top) and post both of my craniotomies (bottom) performed May 23 & June 1, 2012 . You can see the infection in the white, and then where it was removed. Notice how much swelling was present before my surgeries. (The bottom MRI, from June 1, 2012, does not show my most recent MRIs with no abscess or swelling left. Unfortunately, I have not seen those in person.)
I will be on Voriconazole for at least another year just to ensure that the infection does not return. Currently, I take a total of 27 pills/day which Is significantly less than the 46 pills/day I was taking at one point. When I do finally get off the Voriconazole it will be only about 15 pills a day for the rest of my life, and if I can kick some of these vitamins, maybe even less. The very, very least amount of pills I can ever take per day since my transplant is nine pills, which really isn’t that much to swallow, no pun intended.
The following week after seeing Dr. Topal, I had an appointment with my neuro-ophthalmologist at Yale-New Haven, Dr. Walsh. I have seen Dr. Walsh every few months since my transplant because my vision started to cause me problems back in the hospital following my liver transplant. I started having the worst pounding head-aches you could imagine. It felt like my head was being slammed against a concrete wall. That wasn’t all, I would also see bright flashing, moving, colored lights in the right hand corner of my visual field. I was in so much pain and extremely tormented by the flashing lights and voices I was hearing, I just wanted it to end. It felt like there was a painful disco going on in my head and I would have done anything in the world to make it stop. It got really bad and it didn’t take long for my doctors to realize something was really wrong, especially after once again during my hospital visit I was unconscious. I honestly don’t know how I got through it, all I know is I just wanted it to end; anyway, anyhow.
At first my medical team tried to put a patch over my right eye to see if that would make the flashing lights go away. I felt like all that did was block-out some of the brightness from the room. I was still in pain and annoyed by the pounding in my head the flashes I saw. Then my condition started to get really bad and I was in-and-out of a state of awareness. I vaguely recall one time when they were attempting to perform an MRI on my brain. I couldn’t even get through sitting still long enough for them to get an MRI it because my head hurt so excruciatingly bad and I was screaming for them to stop. Other times I kept trying to hold my head and squeeze it to put pressure on certain points to decrease the pain in any way I could. The whole not being able to tolerate pain is extremely unlikely for me. I can usually I can endure the utmost pain without letting anyone know something hurts me if that is any indicator to you how painful it was.
My medical team at Yale-New Haven put a patch on my eye and alternated between hot and cold packs to try to minimize the flashing lights and extremely painful headaches
My doctors eventually discovered an extremely rare, and very aggressive fungal infection in my brain called aspergillus. Immunosuppressed patients with aspergillus in their brain is very rare. What is even more is them surviving. My doctor’s only option was to operate, but the likelihood that I could come out with any vision, able to speak, or not paralyzed were not very good at all. That’s even if I survived at all, which was extremely unlikely anyway, and even more so when considering what my body had already went through weeks prior (seizures, cardiac arrest, liver transplant, massive blood transfusion).
Once I had my first brain surgery, I lost my sight to the right in both of my eyes. If you drew a line down the center of each of my eyes, the right half of each of my eyes can no longer produce an image in my brain for me to see. The fungal infection in my brain, located in the left occipital lobe of my brain The occipital lobe is responsible for your visual and speech output. As you may or may not have learned in biology class, the left side of your brain affects the right side of your body, and the right side of your brain affects the left side of your body. Due to the location of my infection (on the left side of my brain), it caused a visual cut to the right side. This field cut is called Homonymous Hemianopia. I can hardly say that correctly, so I, like many others just refer to my visual deficit as HH.
With this type of visual cut in both of my eyes, I was highly prone to word blindness with writing and reading impairments. I am extremely lucky in that I was spared about 3 degrees in my central-right peripheral vision, and because of this I am able to read and write with no difficulty at all. Initially, I did have some reading issues and episodes of dyslexic letters, but after a short time of exercising my brain I was able to resume reading and writing without any problems at all. I had some speech difficulties when I was first discharged and talked very, very slowly, and slurred often. I would avoid certain words just because I couldn’t say them confidently. It didn’t take long for my speech to resume to normalcy after speech therapy, while I do notice I do still tend to slur when I get very tired and sometimes I still chose to avoid using certain words when I am on the tired side.
The first couple of weeks after my brain surgeries, I had to shut-one eye and squint to text and read because it was very hard to see, things were not aligned. That definitely corrected itself or I have learned to compensate better than expected so I am very, very grateful for that. One thing I have noticed, is that while working on the computer, I can’t see things on the right side of my computer screen. Also, when I am watching TV, I can’t I see the whole screen. I have to constantly shift my eyes to the right side of the screen just to see what’s over there, as whatever is in my right peripheral has just “disappeared”. I can’t imagine not being able to read and write, since those are two of my outlets that I now turn to while being confided to the house so often.
After my first brain surgery, my aunt Dana (left), and my aunt Caryn (right).
I was discharged from the hospital in June 2012 and from then until this March 2013 I have gone to three appointments with my neuro-opthamologist, Dr. Walsh, and once with my optometrist at Opticare locally, here in Danbury, CT. I have taken three visual tests during that time all with Dr. Walsh at Yale in New-Haven, CT.
Dr. Walsh has been around a very long time, and has a lot of credibility under his belt. On the Yale website, the little blurb about Dr. Walsh says, “ Dr. Walsh was named Distinguished Graduate by Bowman-Gray School of Medicine in 1983, and received an honorary degree from Bejing University in 2004. He is the author of two textbooks related to Neuro-ophthalmology, including Visual Fields, published by the Academy of Ophthalmology and now in its third edition. He serves on the Telemedicine Board of Orbis International, and has more than 20 articles online. He is a frequent lecturer at other universities, and a frequent contributor to the literature.” Sounds impressive and credible.
After my most recent visual field test, Dr. Walsh reported to me the words I did not really want to hear. His exact words in regards to my visual field exam were, “Status quo.” Status quo? I’m an athlete, and hearing anything besides “better” or there is “improvement”is not what I want to hear, ever. Dr. Walsh went on to say, “The good news is, nothing worse. Nothing is better, but it is exactly the same. It is not worse so that is good.” Okay, well I’m glad it’s not worse, but honestly I was never thinking in that direction! I was actually hoping that it may have gotten slightly better, since Dr. Topal told me the week before that the swelling was gone in my brain. I thought perhaps, less pressure on my optic nerve may mean there was a miracle chance that some of my vision would gradually return and eventually I could drive? I know that is a stretch, but I am all about wishful thinking. I mean, it’s a miracle I’m alive, on more than one occasion already, so I’m pretty sure another “miracle” isn’t that much more to ask for, right? Apparently my ambitious expectations were a long-shot and what I thought was completely wrong, according to how I interpreted Dr. Walsh’s report to me.
So my next question was, “I’ve looked up prism glasses online and how they can expand your visual field, can I get those and would they assist me in being able to drive?” Dr. Walsh, said, well, no, because I have homonymous hemianopia. I pretty much only see what is to my left or directly in-front of me, almost nothing to the right, at all. You could be standing to my right with your middle-finger directed right at me if your’e standing on my right side and I wouldn’t have a clue that you were even there. Go ahead, you can get your free shot haha.
I was fortunately spared a few slight degrees to the right of central (3 degrees), which is an enormous help me with reading. For the most part in the books I have read, I have been able to see the entire page of the book and have learned to scan better so I can shift my eyes to make sure I have read all of the words on the page. Some HH patients only see half of the page and so they may skip half the words on the page simply because they do not see it.
I can only see directly in-front of me, which is obviously a safety issue for driving. “It is illegal to drive, ” Dr. Walsh says in a which came off to me as a not-so pleasant, slightly condescending tone, assuming as-if had been cruising around illegally, (which I certainly have not excluding once in a parking lot, and on the quad (4-wheeler) in our backyard). The other doctor in my exam room, much younger, (and very handsome I might add), chirps in and says that, “Legally to be able to drive in the state of Connecticut you need to have 140 degrees in your visual field to legally drive.”
Originally when I lost my vision while I was in the ICU at Yale, I just thought I had an issue with my right eye since I can’t see to the right, It took a visual field exam and neuro-opthamologist to tell me that I had a field cut in both eyes to the right side. Apparently there is a name for this “disability” as I have been labelled by the government. I can never say it correctly, but I did read up on it (which I found here: http://www.eyeassociates.com/hemianopsia_article_blue.htm and http://www.hemianopsia.net/).
In-order to drive in Connecticut you need to pass the visual field test which is set for 140 degrees peripheral vision. My doc said I have about three degrees right of central, so around 93 degrees, I’m assuming that is. Prism glasses can give you about 20-30 extra degrees, so if I could get those, that would put me at about 120 degrees, at best, still short of what I need legally to drive in Connecticut. Maybe I can move to Iowa or somewhere in the Midwest, I bet their laws are less strict. If worst comes to worst maybe I can live there and ride a cow for transportation, lol. MOOOOOOOve, biatch, get out the way!
My visual field test which shows homonymous hemiaopia (black is where I can not see)Each eye shows almost exactly the same visual field loss to the right
I think my heart broke into a million pieces when I heard this. He totally made me feel like it’s nothing at all to never be able to drive again. The thought of having your driving privileges taken away for the rest of your life, in my opinion, is one of the worst things has happened to me during this whole transplant experience. It has taken away my entire independence and freedom, two things that I took for granted prior to my transplant. Yes, my family is plentiful and very loving, caring, and self-sacrificing for the most part. While I am so grateful and fortunate to have the amazing family I have, it does not eliminate the fact that I so desperately crave my independence back, and there is not anything else in the world I want that to one day be able to drive again.
That crushing news a few weeks ago was one of the biggest disappointments I have been told thus far. I was balancing fighting back the tears and being so extremely mad at the same moment. I bottled up that frustration for a good few days while my family kept assuring me the world is not over and that one day, I will be driving again. At first, I really did lose hope for several days. I let that negative diagnosis said consume my mind with the worst possible thoughts and drained my head with misery and limited self-worth. Then, something my family said finally got me thinking. They said, “Well the doctors also said you wouldn’t be alive, and you are. They also said you might be paralyzed, or completely blind, and you aren’t, so the doctors aren’t always right, Mo. You gotta stay positive, one day there is going to be something, there will be some sort of technology and you will be able to drive again Mo.”
I just needed to hear it, and that triggered a “you’re right” moment in my head and I started daydreaming like I normally do thinking of me driving again one-day, and my back-up plan of having a personal driver named Gesualdo that we would call “Waldo” for short for the specific purpose of when I had to call him, I could say, “Where’s Waldo?” Haha.
While my vision may not ever come back, that does not mean some brilliant, ingenious scientist will create some sort of visual assistance gear that will be able to expand my visual field where I can eventually see to the right, and perhaps, maybe even be able to drive. Years ago, people with amputated legs were told they were never able to run again, and now I’ve read an article where a man had not one, but two prosthetic legs, and has run over 9 half-marathons! That is crazy and so bad-ass all at the same time! If they think they are going to tell me I can’t drive, and I am just going to let that be it, then they are very, very wrong. I just have to figure out how to get there, but it is written-down on my long-term goal list, my journal, and hangs on my vision wall. I will have that checked off if it is the last thing I do in this life, and if you know me at all, if I say I’m going to do something, it gets done.
I may not be able to see anywhere near what you see, but you wouldn’t know it. I have learned to compensate pretty well. I did walk in New York City alone on New Years Eve, and even though it was slightly overwhelming, I only bumped into a few people, and tripped only once, so that is pretty good if you ask me considering how mad swarmed the city is on that particular day. I still am having a little trouble though. I went again to NYC with my sister this year, and somehow I managed to get my foot stuck underneath the wheel of a baby stroller that I collided with head on that I failed to see. My sister still won’t let that one go.
A few weeks ago at the grocery, I was walking down the central aisle, with my head turned 90 degrees to the left looking down the aisles and there was a random “sale box” of items that I did not see at all and I totally slammed into that. The other day I went to pick up something off of the floor and I slammed my head hard into the table because I couldn’t see it when I went to bend over. I do walk into the side of the door-frames from time-to-time from cutting the corners too sharp, and I definitely still do bump into people at the store. Overall though, I have learned coping mechanisms such as siting in certain places around the table, and walking along-side people on my left so I can see them and stay close to the wall or edge as a guide.
As of November 2013 I started going to visual therapy at Eye Care Associates, an hour away in Southport, CT. I will write an updated blog in regards to that when that has concluded. What is written below is dated from March 2013.
As I mentioned, I am going to two eye doctors, and my optometrist at Opticare said let’s wait a year and see if my vision has changed at all and see if we can look into prism glasses eventually. I will try to be more patient and hopefully my next visits to the eye doctor will be more optimistic. “Dream lofty dreams, and as you dream, so shall you become. Your vision is the promise of what you shall one day be. Your ideal is the prophecy of what you shall at last unveil.” ~James Allen
In the meantime, I will continue my blogging and on my gluten-free recipe blog that I created which I really have enjoyed trying to create delicious gluten-free recipes (www.glutenfreegesualdi.wordpress.com). I also enjoy my involvement in our young leadership group, COPE and plan on participating in Donate Life New Connecticut events and the American Liver Foundation’s “Liver Life Walk” each year annually. I have also joined Toastmasters International and after my first speech I won the “Kalley Award” for most impact on the speech and voted “best speech” of the night by the club! That felt pretty rewarding and things that like keep me motivated to keep going. You can also keep tabs on me and check my full story and pictures on my own personal website www.justsaymo.org!
I leave with this quote for myself, and for you as well. “If one advances confidently in the direction of his dreams, and endeavors to live the life which he has imagined, he will meet with success unexpected in common hours.” ~Henry David Thoreau
In the hospital at Yale after my second brain surgery in (June 2012) vs. (January 2013) livin’ it up–visiting family at the beach in St. Augustine, FL
Well, I haven’t posted a blog in awhile, but in one way that is a good thing for me. It is good because I have been very busy this past month, and the way things are looking, I am going to be pretty busy for a while it seems. I am the kind of person I have do something all of the time; keep moving, keep going. If there is nothing for me to do, I find something to occupy my time. When I am home alone, with no mode of transportation, I discover and create ways to keep myself busy. I put effort into making each moment productive, in a way that can help me better myself physically and/or mentally.
Recently, I have been a huge fan of the work-outs provided on “On Demand” and I will do 2-5 of those workouts throughout the day (depending on how short/long they are). Killer Core is one of my favorites right now. I tried out one of the cardio dances, and let’s just say I will probably not be letting anyone see how ridiculous I must look doing that one! I’ve also been building a website for my aunt’s new organization that we are in the midst of establishing (I can’t divulge much about that now but stayed tuned!). My aunt is very excited about the organization and her big plans, and I am very excited to be her right-hand (wo)man and utilize my writing and computer skills. We both foresee very big things coming, and I am anxious to see how things pan-out.
The holidays are always a busy time for everyone, but through the holidays and shortly after I had several friends come to visit me, I went on a day-trip to Massachusetts for my cousin’s cheerleading competition, and then I spent two weeks in Florida visiting some of my family. Just like that, January came, and now it is just about gone. It was a great month, but I also have so much to look forward to and keep me busy in the next few months. A productive Mo is a happy Mo.
Four of my really good friends, (whom I’ve met in college at Furman), all currently live within a rather short distance of Boston (just a few hours from me), so we are having a re-union this weekend in Boston, which I am also very excited for! Besides my family, there is not one thing I love more in the world than my friends. Those whom I consider my closest friends, I will have their back no matter what, and I hope they would do the same for me. One of the best characteristics I consider of myself and my fellow Italian family is loyalty. So if I deem you to be in the “MO-fia” as I call it, you’ll always be in good hands; but if you’re not, better start saying your prayers ; )
Speaking of prayers, the following week after traveling to Boston, I have Bon Jovi and Taylor Swift concerts to look forward to. I can’t wait to be Livin’ on a Prayer at Bon Jovi, TSwiftski is one of favorites. We have a CD my aunt plays in the car, and when Livin’ on a Prayer comes on we crank the music up and we sing that song as loud (and it’s horrible) as we can. My aunt has told me that when she hears it she thinks of me, and Yale, and how I was “livin’ on a prayer”.
Besides the concerts, I will be doing some travelling, and during which I will get to spend a couple of visits back in Greenville, SC (where I was living when I got ill). While many of my close friends are dispersed around the country, some of my closet friends still reside in Greenville, so I am thrilled to be able to go and see them. These won’t be your normal visits; we’re talking one of my best friend’s bachellorette parties in Charleston, and her wedding in Greenville, SC this spring with a group of us who haven’t all been together in the same place, at the same time, since probably college….I am already anticipating stomach pain from laughing so hard. I can’t wait to be singing karaoke, and fist pumping, and “livin’ on a prayer” with some of my best friends. Those are some of the best times I’ve had.
When I get excited about things that are going to happen, I often times begin reflecting on the good ole’ times, and can’t wait to have new good times. One of our favorite karaoke songs, and probably one of the most popular of all-time is of course, Bon Jovi’s Livin’ on a Prayer. Arguably, you could say I was; “livin’ on a prayer,” this past year. I often times find myself thinking a lot, about all sort of things. Why am I alive? Why are they dead? What if I did this instead of that? How can I make this gluten-free recipe delicious? How many days until Justin Timberlake’s new CD comes out? How is the Cowboy’s defense going to be next year? Why did so-and-so say that to me? How am I going to afford health insurance when my Cobra expires?–there is no telling what is going through my head at any given moment. Things that I question, I try to research and educate myself and by making myself some-what more knowledgeable on the subject. I usually just end-up attaining a lot of useless facts, and being left with a ton of unanswered questions.
For instance, how did I get a life-saving liver transplant on the very last day I needed one when just one day later I would be dead? How did I survive not one-but TWO brain surgeries for invasive aspergillosis which has a 80-90% mortality rate? How could my body endured three MAJOR surgeries with-in a five week span? How was I able to run the mile in 10:39 last month when I couldn’t even walk in May? The strangest part is, every negative thing thrown in my way this past spring/summer, not only did I come out alive, but I came out swinging! I know I strive to work hard to be the best that I can be in everything I do, but that certainly has it’s limitations. Just like I have my “MO-fia,” there is someone, something, somewhere that has my back. I am very grateful for what must be some-sort of divine intervention, which I like to think of as my guardian angels, and I don’t think I have just one.
I can’t explain the answer to these questions I asked above with a mathematical equation, or a scientific law. I also can’t explain it with a religion necessarily either. What I choose to explain it with is a lot of love and a frame-of-mind; a mind-set that is unwilling to compromise, unwilling to lose. I consider myself a believer-I believe in my family, I believe in my friends, I believe in my guardian angels looking over me, and most importantly I believe in myself. I work hard at my goals, because I believe I can achieve them. I am here now, alive and making great strides, and for that, everyday, I give thanks for everyone’s belief in me, my amazing medical team, my mental and physical strength, my family and friend’s love and support all combined into one big positive force that propelled me to push with all of my might through the numerous, death-defying obstacles in my way. I have gotten knocked down many times, but when I have gotten up, I only stood taller and stronger. I lost my pulse four different times, and I am still here, doing better than ever. I don’t believe there is anything or anybody out there that can knock me down, and keep me down, and whether that is true or not, it doesn’t matter because it is what I believe. Someone can try, but good-luck with that, you will have the “MO-fia” after you, and I’ll be too busy “livin’ on a prayer”. : D
“We’ve got to hold on, ready or not. You live for the fight when it’s all that you’ve got. Wooaaa, we’re halfway there. Wooaaa livin’ on a prayer. Take my hand and we’ll make it, I swear. Livin’ on a prayer.”
2012 was a pretty rough year for me, to say the least, and it can be briefly noted as this: Sudden acute liver failure. Sixteen days admitted at Greenville Memorial (South Carolina). Unexpectedly, moving back home with my extended family in Connecticut. Fifty-two days admitted at Yale Medical. A last-minute liver transplant. Seizures. Lost pulse. Two risky, very crucial, life-saving brain surgeries within 3 weeks of a liver transplant. Loss of right peripheral vision in both my right and left eye. Restriction from operating a motor vehicle indefinitely. Disabled on social security and medicaid….There’s pretty much no other way to sum it other than being the most crazy, effed up year of my life.
Although I feel like I have for the most part fully recovered, and I try to be as “normal” as you and anybody else, I still have some work ahead of me. I have been making a very swift recovery physically which you may or may not have tracked via Facebook, but I have had many set-backs mentally which you may be unaware of.
I have not been easily able to grasp all of the sudden and drastic changes that comes with a transplant and how by having a transplant, my life has been forever changed. I am still fighting a daily battle trying to come to terms with what happened and how another person’s life was taken away from them, and their organ is the only thing keeping me alive. I have a life, and they do not. Their family suffers and grieves, and mine is happy and celebratory. Sometimes it doesn’t seem right. I am still having a very difficult time coming to terms with everything that has happened as it happened so suddenly and so drastically. Those who were not there to actually see what I went through, to experience my pain, to endure my struggle, to personally encounter my fight, then why should I expect you to understand at all?
Like I already said, it is very difficult for me, I do not expect it to be easy for you. We live in a greedy world, and sometimes I feel that living inside me, my donated liver, was the greatest act of selflessness that a person can do. It has touched my heart and my root of being so deeply, that I will forever and ever, feel indebted to fulfill this life with great meaning in respect and honor to my donor and his/her family and friends.
With time, and patience, mark my words, I plan on being fully recovered within one-year from now, as I insist on doing everything necessary in-order to do so. I will put 125% of my mind, my body, and my soul in order to get there. With that being said, anything or anybody that will not be a positive and motivating addition to my efforts to succeed in my personal journey to live a long, happy, and healthy life, will most likely no longer be a part of my life. I have long been willing to put others before me, and in return I have been compensated with appreciation and sincere acts of generosity by many, but also mental scars by others. That unfortunately is life, and now it is time to move forward and create a positive and appreciated path before me. On the upside I have learned many valuable lessons from my recent experiences and relationships with friends and family, and for this new year and this new life, I have very high expectations to turn my very fortunate “new beginning” into something meaningful and commendable.
I plan on still being generous and kind, and without-a-doubt the biggest goofball you may come to know, finding great humor in the silliest of things. On the other hand, I now lack the strength and desire to haul along other’s senseless and heavy-burdens with me, and it is my goal to no longer allot any of my time to such obstructions. These next few years are my years to triumph. I would love for all of my closest friends and family to be along-side me in support of my journey to thrive as an admirable person and not only make a difference in my life, and possibly even yours in the years ahead. Relationships should help you, not hurt you, so in order to do that you need to surround yourself with people who reflect the person you want to be. Your friends and family should consist of people you are proud to know, whom you admire, and show equal love and respect back to you. I do realize this will not be the case for all, as some people come-and-go, which will be a challenge I will have to face as well. I would love nothing more than to see you standing not behind me, but right next me in my journey to conquer 2013 and the following years after.
“Life is too short to wake up with regrets. So love the people who treat you right, forget about those who don’t. Believe everything happens for a reason. If you get a chance, take it. If it changes your life, let it. Nobody said life would be easy, they just promised it would most likely be worth it.” ~Harvey MacKay
These are two short videos of some pictures of my medical experience and shortly after discharge at Yale Medical in New Haven, Connecticut. (Late April-June 2012).
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 🙂
So it’s Monday. Monday is just one of those days that just hardly ever seems to have any appeal whatsoever. Yesterday may have concluded to be an awesome weekend with your friends and family, but it flew by so fast, and now all you can hear is the annoying sound of your alarm going off. Your next move is to probably hit the snooze button a few times because those few extra zzzz’s are better than any Monday could possibly be. Waking up early to go to school or work is never ideal, but Mondays just always seem to be the worst day of the week, particularly because it is the farthest away from the weekend. For most people, it is the kick-off to a treacherously long school or work week, and Friday can never-ever seem to come soon enough. You might not even have a typical school or work schedule, but everyone still experiences their own “Monday” in one way or another, no matter what your lifestyle or schedule entails.
So, it’s Monday, and just because it is Monday you’ve started off your week with the negative juices already coursing through your veins before you even step out the door. Anything seems better than going to work or school at this point. Well, how do you expect your day to turn out when you’re approaching the day with that kind of attitude? I will tell you right now that the guy/girl who woke up on the “right-side” of the bed today is going to beat you in today’s race simply because he/she is already seeing things in a positive light.
I believe that just about anything you perceive as negative, can equally be opposed by something positive. For instance, in this case, at least you go to school and are receiving an education. At least you have a job, almost 8% of the country is unemployed. Would you rather be uneducated and unemployed? I will assume not, because I can’t imagine the possibilities you WON’T have being uneducated, unemployed, and a poor attitude on top of that.
I’ll admit, maybe Mondays do suck for some people. Maybe the only thing you have to look forward to is tonight’s episode of “The Voice” or Monday Night Football? But you know what, it’s really not that bad, something could always suck worse.
I can tell you a time that really sucked. When I was sick in the hospital at Yale for 52 days, I had no concept of what was a Monday or what was a Friday, or any day for that matter. Each and every day that I was conscious, started out pretty much the same, no matter what day it was. The day-shift nurse arrived usually sometime between 7 am and 8 am to introduce himself or herself, write their name on the dry-erase board, the PCA’s name, and the date. Looking up at that dry-erase board was really the only way I knew what day or date it was. The highlight of my day, besides my family visiting me, was usually getting a phone call or a text from friends back home in South Carolina, and that is only when I was having “good days” and was able to comprehend who I was. There were lots of “good days,” but there were plenty of days my family tells me about that I have absolutely no recollection of occurring; days completed missed because I wasn’t conscious.
The dry-erase board with the date was the only way I could remember what day it was.
While I was in the hospital, I usually did not get much sleep. Even if I was lucky enough to fall asleep, I was woken up every 2 hours or so to get my vitals checked or blood drawn for testing purposes. Breakfast for me was not your usual bowl of cereal or breakfast bar on-the-go. I have been diagnosed with celiac disease, so anything I eat has to be gluten-free. Not exactly what you would call convenient, or even tasty for that matter, especially in the hospital. I will say that Yale did offer a pretty good gluten-free selection, it was no Chick-Fil-A breakfast by any means, but for what it was, it was decent.
So, after I made my breakfast selection, no matter what I ordered, (it could be a bowl of Chex cereal and a banana) it would take 45 minutes to arrive. So, by the time my meal had finally arrived I was usually swarmed by doctors and their “team” of colleagues (attendings, residents, etc) ready to tell me a whole bunch of things that I usually could not say or pronounce correctly. Can I have the dumbed down version please? Thank you.
At one point I was being seen by seven different specialties; that is a lot of docs checking you out all over each and every day (cardiology, neurology, liver, kidney, infectious disease, hepotology, and hemotology). Each day they would come in to give me test results or tell me what kind of procedure(s) they were going to do to me on that particular day.
Finally after finishing breakfast which was interrupted at least a good 5 times by the nurse or visiting teams, next on the agenda was waiting to be carted away on a bed or in a wheelchair to go get an echo, an X-ray, a MRI, or whatever I was having done that day. Sometimes I had two or three different tests performed in a day. That was pretty much my day, and then the whole routine would pretty much start over very similar the next day. Mind you, this is when I was conscious, and this does not include what I consider my “non-routine” hospital days.
There were a few days that would start off “normal,” for being in the hospital that is, but then all I could remember is going to sleep in my room on the 9th floor and waking-up two days later in the ICU with tubes in my mouth not having any idea what had happened or where I was. That really blew my mind. What if I had never woken up? It’s difficult to think about sometimes, and it always makes me emotional when I do start thinking about it; but I did wake up, and I am doing great now, and that is all I can be happy for. (In later blogs I will address some of the not-so-normal days spent at Yale, with the assistance of my family who unfortunately had to witness some pretty terrible things from what I hear.)
Even though for 52 days straight I was a prisoner to Yale, in retrospect, you just have to think that It could have been worse. It could have been 100 days, I might still be there, or even worst, not be living at all. During that period, I had become acquainted with my medley of nurses on both the 4th floor ICU, and the 9th floor (the transplant floor) because I had spent so much time back-and-forth between the two floors. The day I was admitted to Yale Medical, April 24, 2012, I was put on the 9th floor and my nurse’s name was Maureen. She went by Mo. I have gone to school with several female “Mo’s,” but it’s not as common as say maybe having a nurse named “Sarah” or “Amanda”. How ironic I thought?
You may think that everything that has happened to me is horrible, and no doubt nothing about it has been a pleasure; but the way I see it, everything has been a blessing in disguise. For some unknown reason it was meant to happen. Yes, I did have to fight hard, and yes I do believe there where some angels looking over me, but according to the science of it all, there is a much-much greater chance of me being dead than alive right now. All of those negative statistics don’t matter right now, because not only am I alive, but I am doing great, better than anyone could have imagined! I have experienced pain, and feelings, and moments that I would never wish upon my worst enemy, but in the end I am glad to have experienced it, to have survived it, and here to be able to share some of these “MO”ments with you.
I stand here now, the healthiest I have probably ever been in my life. Not for one moment in the 16 days I spent in the hospital at Greenville Memorial or the 52 days I was a patient in the Yale ICU or Transplant floor did I think I couldn’t come out alive, deep-down I always felt I was going to make it. Several times I could sense my family’s nerves’, and occasionally I even sensed the doctors lacking conviction in me surviving. I still did not get scared. Whatever was going to happen, was going to happen, but what is the most important of all, is that to me, in my head, I had everything under control. I think sometimes I was the one giving my family and doctors hope. My constant positivity and my vibe gave everyone in the room a better feeling from when they had walked in. Even when I physically couldn’t make myself smile, I still tried. That is what kept me in the game; that is why I am still here.
My sister Desiree, flew up from Florida to be by my bedside. Even when I couldn’t smile, I still tried.
At times people may have been nervous about my outcome, but everyone around me, near or far, believed in me, and so I believed in me. I will say it over-and-over again, it is mind over matter. Your mind is the most powerful weapon you have. You can use that power for good, or just as easily for bad. I try to channel my mind and it’s thoughts in a positive direction, and just look, I have turned some pretty horrific things into the unimaginable great. Why can’t you do the same? It’s not that you can’t, I believe you can do anything you put your mind to, but you just have to truly believe in it too. Remember, it never hurts to have a few people believing in you too! It may be Monday, but there is no better day than a Monday to start off with a fresh mind and a good outlook on life. I don’t know about you, but I try to turn a Monday into a MOnday : )
“Itis not work that kills men; it is worry.” –Henry Ward Beecher
Just Say Mo Foundation 