Dearest family, friends, and supporters,
Here is the full four-minute story that aired on the 7 o’clock news on WFSB Channel 3 this evening. Thank you to John Holt for putting together an amazing story! I also want to say thank you to all of my family, friends, and supporters who have been there for me through every up-and-down over the years, as well as a very special thank you to my anonymous organ donor who has given me a second go at life. This new life has given a whole new appreciation for what life really is about and reinvigorated my drive to live a life of purpose and ultimate meaning. I had long been searching for a “passion” that would bring a sense of fulfillment to my life, and it wasn’t until my organ donation until I truly knew what I was supposed to be doing with my life. Now I am certain that no matter what I am doing, where I am doing it, or who I am with, that I will be raising awareness about the life-saving benefits about organ/tissue donation with a piece of my donor guiding me every step of the way. Thank you all again, and I hope you enjoy the video!
P.S. Maybe we get this hands of The Ellen DeGeneres Show so I can accomplish my next mission of spreading awareness about organ/tissue donation on her show! Thank you for all of your help and support in helping me reach this goal that I am determined to accomplish!
“You were born with the ability to change someone’s life. Don’t ever waste it.” ~Unknown
April is Donate Life Awareness Month, so for the month of April I will be raising awareness and sharing stories about organ donation and how it has saved my life, and the lives of millions of others.
On May 3, 2012, I received my life-saving liver transplant from an anonymous donor, forever changing my life. I am not only beyond grateful for this second chance at life, but I am also thrilled at the opportunity to make a difference in other people’s lives by inspiring others to become registered organ donors.
Since my liver transplant, which occurred two-years ago (this May 3rd), I have run in five 5Ks and broken 80 several times on the golf course. I’ve gone to see Justin Timberlake, Bon Jovi, Taylor Swift, Jason Aldean, and FL/GA Line perform live. I had the honor of meeting Mr. Shark Tank, Mark Cuban, at my best friend’s wedding to NHL Dallas Super “Star” Mike Modano. I have also proudly been the American Liver Foundation’s Liver Life Champion in which I have given several public speeches about my story and also filmed a Public Service Announcement in efforts to raise awareness about the life-saving benefits of registering to be an organ/tissue/blood donor.
This summer, I will be competing nationally in my first Transplant Games of America, against other transplant recipients and donors in golf, 5K, and two other sporting events of my choice! Also this summer, my childhood dreams will finally come true when I get to see Justin Timberlake perform live at the Mohegan Sun Arena, in Uncasville, CT 🙂
None of this would be possible if it wasn’t for an anonymous donor who decided one day to check “yes,” yes, I will be a registered organ donor. That is it, one simple, effortless “yes” which at the time meant probably nothing to him/her, but that one little “yes” has allowed me to do all of the great things that I have mentioned above.
Growing up, I was very determined, hard-working, and had a relentless passion to succeed. The drive I innately had as a youngster began to fade and transform into uncertainty and doubt mid-way through my collegiate career. After I graduated from college, I felt very lost in direction and in purpose. My purpose in life was nothing but unclear, habitually wreaking havoc within my soul. Somewhere along the round I had fallen into a repetitive routine of nothingness. “What am I doing with my life?” I wasn’t pursuing my dreams, and I was not engaging or a part of anything that felt fulfilling and made the heart and core of myself smile. Maybe perhaps it was no coincidence that I became fatally ill, because honestly, my soul had felt dead for years.
In March of 2012 I diagnosed with stage-4 Liver Cirrhosis, with the initial diagnosis due to Budd Chiari and Factor V Leiden. I oddly didn’t see my diagnosis as a misfortune, rather, I saw it as an opportunity–an opportunity to change my life, an opportunity to regain my purpose, and an opportunity to impact the lives of others. My illness resparked my drive and passion to succeed; it lit a fire under my inner competitor, and my inner competitor perceived my illness as a challenge. This wasn’t your routine challenge though, I was facing undoubtedly one of the toughest and most fierce competitors l have ever had to face: I was up against death.
During my liver biopsy at Yale, my liver was accidentally “nicked” which caused unnoticed internally bleeding until one evening on the way to the bathroom, I just collapsed. “Code Blue! Code Blue!” I could faintly hear as my eyes shut. Several episodes of cardiac arrest ensued with the likelihood that my last days were behind me if a liver match was not found in the next 24 hours. With the National Average wait-time for a liver match being 361 days, it seemed like I was going to need a miracle to survive. You may not believe in miracles, but You might want to start.
Within 24-hours of my death-defying experience, my medical team at Yale-New Haven started prepping me for liver transplant–word had gotten out there was a potential matching donor for me. The stars aligned in my favor, and on May 3, 2012, I was a recipient of a last-minute, life-saving liver transplant from an anonymous organ donor.
While it was amazing when I had finally awoken from the anesthesia to find out that I had a liver transplant, I did not have much time to be grateful before complications from the transplant unfolded. A fungal infection, known as invasive aspergillosis, had manifested within my respiratory system, travelled into my bloodstream, up to my brain, and manifested into a serious and highly fatal infection. My body was too weak from surgery and immunosuppressive medication to battle the infection at its infancy stages like a “normal” person’s immune system would have, and so it aggressively started to cause destruction in the occipital lobe of my brain.
Invasive aspergillosis in immunosuppressed patients has a an extremely high mortality rate, approaching near 100%. Despite these odds, my medical team worked very hard at keeping me alive. I underwent two extremely risky brain surgeries combined with intensive six-seven hours of invasive anti-fungal treatment every night for several months.
Whether the brain surgeries and anti-fungal treatment would save my life was a question that even the top medical surgeons in the country at Yale didn’t know the answer to. All we could do was give it our best shot, pray for a miracle, and sit back and see how my destiny would unfold.
According to medical statistics and previous transplant patients who have acquired invasive aspergillosis in their brain, it is utterly unjustifiable as to why I am alive today. While the statistics and my doctors may not be able to explain why or how I became so ill, so quickly, or even how or why I have survived these several life-threatening illnesses and surgeries all back-to-back-to-back in such a short time, all I do know for certain is that I am thankful. Thankful for my family, thankful for my friends, and most importantly thankful for my donor, their family, and their generous donation. The whys and hows of my survival really don’t matter; what matters is that I am alive, I am doing fantastic, and I am ready to change the lives of others.
My story of survival is one that I believe all throughout the world need to hear. I am living-proof of the life-saving benefits of organ donation. Because my anonymous donor was registered as an organ/tissue donor, his/her selfless act saved my life along with saving or enhancing the lives of 14 others on that third day of May. Currently, 18 people die each day because there is a shortage of registered donors on the list. Eighteen people every day, thousands each year, could be saved and have a second chance like I did, if we all checked “Yes, I want to become a registered organ donor.” One organ donor can save up to eight lives and enhance the lives of up to 50 people! A swift check of “yes” is all it takes to saves lives and be a hero to someone and someone’s loved ones.
You might be supportive of organ donation, but are you a registered donor? As Benjamin Franklin once said, “Don’t put off tomorrow what you can do today.” Don’t wait, donate.
For more information about organ donation and becoming a registered donor, please visit these websites:
Watch my video and see exactly how organ donation has saved my life “The MOtivational MOvie” which shows my two-year journey of having a life-saving liver transplant, brain surgeries, and my life as a survivor.
“Don’t give up before the miracle happens.” ~Fannie Flag
It is hard to believe that eighteen months ago I was bed-ridden in the ICU on life-support. Tubes in-and-out of my throat, surgery after surgery, no one knowing whether each day if it would be my last. Living in uncertainty unwilling to even produce a thought for yourself while your body instinctively telling you that your only job for the day is “to survive,” leaves a lasting impression in your head. What I endured and have overcome in all 71 total days in the hospital last year was not only a game-changer, it has forever impacted my life. For the better.
Since my transplant, multiple brain surgeries, extensive physical, occupational, speech, psycho, and now visual therapy–I have since made great strides from the depths of ground zero, essentially. In all honesty, I feel the healthiest I have ever been in my entire life. My strength and endurance are coming around quite nicely as well. I have been working on myself, and making the best “me” that I could possibly be. I have a feeling, almost a knowingness, that I am on the right track and great things are just around the corner for me.
As I mentioned before, recovering from three very major surgeries in a five-week time span, takes quite an enormous toll; not on just my body, but my emotions as well. I can proudly say I have been seeing a psychotherapist for the past four months. My therapist, Susan, has helped me with dealing with the emotional aspect of having a transplant as well as dealing with some of the permanent life changes I have had to make. I have come a long way in the past four months. I used to cry for hours upon hours, locked away in my room. I had no idea why I was crying or how to stop. I was told it was okay to cry. It was okay to let it out. I had so much emotional grief built up from what happened to me, that it all just eventually started coming out in the form of uncontrollable tears down my face. Still, to this moment, tears well up in my eyes just writing and reflecting on my experience.
The tears are not always exactly sadness though. They are all sorts of emotions wrapped into one colossal meltdown. Happiness. Frustration. Triumph. Anger. Anticipation. Discouragement. Wonder. Hope. Appreciation. Dissatisfaction. Confusion. Gratitude. While I am still working to overcome all of these emotions, I am in a much better place than I was several months ago.
Since my transplant, I have often felt guilty. Guilty because I now have life, while my donor doesn’t. My donor is another human being, someone’s daughter, son, brother, sister, cousin, and they are dead. The only reason I am alive is because they are not. I know they are not dead because of me, I am alive because of them. It has been very tough on me, and I imagine this feeling of guilt is going to stay with me forever. I will never be able to repay my donor for their ultimate act of gratitude, but what I can do is give back in the form of being involved in organizations that raise awareness about organ donation, liver disease, and/or other topics that I desire to be a part of.
Since my transplant I have involved myself in several groups, as well as volunteer for several organizations. Donate Life Connecticut and the American Liver Foundation are just two of them, but one of the first groups I became involved with was COPE (Community Outreach for Purpose and Empowerment). COPE, formed by my aunt, aims to empower girls and young women. Members of COPE learn and improve their goal-setting techniques, engage in active plan to achieve their goals, and learn to overcome obstacles and interference that may be holding them back. Overall, the members of COPE learn how to live their life with a purpose. I created the website for COPE and update it regularly. I have really enjoyed doing this, because it allows me to get my creative juices flowing and keeps my mind sharp.
Another way I keep sharp, is through attending and participating in Toastmasters. Toastmasters is a well-recognized, international organization, that is focused on enhancing people’s public speaking, communication, and leadership skills. My aunt Caryn had a feeling I would be speaking publicly about my story one day and
encouraged me to join. If you aren’t a member yet, I strongly encourage you to find one in your area and get involved. I went from being completely incapable of speaking in front of a small crowd, to confidently giving a speech in front of hundreds in a short few months. I began attending the meetings last winter and have since given two prepared speeches. I won “best speech” for both of my speeches, and even won the club’s “Kalley Award” (most impact on the meeting) after my “Icebreaker” speech! My aunt was certainly right when she told me Toastmasters was going to be helpful in my future. I never anticipated how quickly though.
This year I was selected as one of the American Liver Foundation‘s LIVEr Life Champions. As the LIVEr Champion, I served as “the face” for the Liver Life Walk this past September in Stamford, CT. Leading up the event, I filmed a :30 sec PSA for the ALF, was featured on The Liver Life Walk’s regional brochure. Not only that, but I had to be one of the faces at the walk, and give a speech about my survival in front of several hundred people.
I continue to utilize my communication skills while serving as a volunteer ambassador for Donate Life Connecticut. In the past year I have been a part of the Danbury AAA donor program, attended several Donate Life events. I have also shared my survival story to the medical and ER staff at Danbury hospital, raising awareness about organ/tissue donation (through the New England Organ Bank and Donate Life CT). Just last week I was in Greenville, SC and had the privilege to shared my story with the Furman Women’s golf team. That was amazing experience, because I could see that I really touched those girl’s lives. The more speeches I do, the more confident and easier it is to speak in front of people. Hopefully it only gets better from here on out.
I have also occupied my time by returning to the game I hate to love the most, golf. Last January, my grandfather, Emilio, took me to the driving range to see if I could hit; I couldn’t even make one complete swing. I had so much pain in my elbows from being so weak and suffered from severe joint pain, a side-effect of several of my medications. I continued trying to workout and get stronger. By April I was hitting at the driving range with elbow braces trying to minimize the pain. About a month after that I played 18 holes. Shortly after, I was able to walk 18 holes with a pull-cart. I spent a lot of my time practicing and even played in a couple of captain’s choice tournaments in the area. In one of the tournaments, I won $100 for lowest gross score (-11) with my team. At another tournament I also won $100 for longest drive (from the red tees, don’t get too excited!). By the end of the summer I was able to shoot in the the low 80s from the white tees. As of now, I have only broken 80 once since my illnesses; a 73 at Candlewood CC (fairly easy par 71 course). This summer you better believe I am going to get my scoring average down in the 70s!
Now I am currently in St. Augustine, Florida visiting my mom and stepfather. Just a few days ago I was in Greenville, SC for a wonderful nine days catching up with my bestest of friends. I will be spending the next three weeks here in Florida soaking up the sun (while of course wearing my SPF 50), playing lots of golf, attending my 10-year high school reunion (Nease High School, Ponte Vedra Beach, FL), and doing other fun activities with my mom and step dad. Once this trip is over it is back to the grind per-say of my routine of visual therapy, other various doctor appointments, follow-ups, blood work, and daily exercise.
My transplant doctor at Yale informed me that by my next infectious disease appointment in February, there was a good possibility I would be taken off Voriconazole, my anti-fungal medication, Voriconazole. Fingers crossed, I would love to be off this medication; not only because it would be 12 less pills/day to take, but also because the medication is $4,400 a month (no that is not a typo, it is $4,440/month). Even though the price is covered by my insurance, my insurance is such a pain my ass. Each and every month I have to battle with them to get me my medication on-time, simply because my insurance does not want pay for it. Oh well, it could be worse right? Eighteen months ago I was on life-support. Battling insurance inconveniences and other minor hassles are insignificant in comparison to battling to be healthy, battling to breath, battling to to be alive.
In the last eighteen months I have learned so much about myself, about life, about death, and about the inbetween. I will never be able to fully express, in detail, the emotion or meaning of what I have been through. I would never wish it upon my worst enemy to experience what I experienced last spring, but at the same time, I prefer it happen to me rather than someone else. As crazy as it sounds, I would do it again if it meant someone else wouldn’t have to go through it because I know I can handle it. Knowing you knocked “death” on it’s ass after looking it square in the eyes, is one of the most satisfying feelings in the world. I was meant to survive. Before you survive you must endure struggle. That is what gives it meaning. So many people go along just cruising through life. When they coast, they forget about what is really important. I was one of those people.
I have a purpose and I am just now finding out what my purpose is. It begins by being able to share my personal medical journey with you so you can learn from me. What do I hope you learn? I hope you learn that giving back is one of the greatest things you can do. I hope you learn that a positive attitude is the most powerful and infectious attributes that you can have. Lastly, I hope you learn to believe in yourself, and have faith that everything is going to fall in place one day.
Eighteen months down, so many more to go….
“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” ~C, JoyBell C.
Yesterday, September 29, 2013 I was one of two Liver Life Champions representing the American Liver Foundation at the 2013 Liver Life Walk of Fairfield County along with little Charlee and her Angels 🙂
I attended this event last year just a few short months after being discharged from Yale for a miraculous liver transplant and two incredible, life-saving brain surgeries to remove a rare, and fatal abscess consisting of a highly aggressive fungal infection called invasive aspergellus.
Below, I gave this speech to hundreds of family, friends, and supporters in efforts to raise awareness, educate, and assist the 30 million Americans currently living with liver disease in one way or another.
The experience I had at this year’s Liver Life Walk was one of the best days of my life. I felt so comfortable sharing my story to the crowd. It wasn’t just any crowd though; these were people who have been affected directly or indirectly by liver disease.
I will say no more, you can hear how it went in the above video. Thank each and everyone of you for your continued support of Team Just Say Mo, the Liver Life Walk, the American Liver Foundation, and Donate Life.
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the next election. That just did not seem possible to happen. To me?? Nahhhh…….
Ha. Well it happened alright. My life was normal, I seemed healthy, then the next thing you know I am jaundiced, blowing up like a balloon, and diagnosed with end-stage (IV) liver disease among a list of other things. Is this some sort of sick joke? How could this be? I was playing indoor soccer like two weeks? I’m not dying of liver failure, can’t be. After I smacked my face a few times and realized I wasn’t hearing some diagnosis from a scene on Grey’s Anatomy, I was like, “So where do we go from here, what can we do about it?” “Your only hope of survival is a liver transplant.” Seriously? A transplant? I asked how much time my liver had left, and I was told maybe a few months. (that was until my liver got nicked during one of my liver biopsies and then I got really, really sick, really fast).
I did some research and the average time a person waits for a liver is approximately one-year. I did not have a year. I was lucky if I had a couple of months. I was admitted to Yale New-Haven on April 24th, 2012, and received my transplant nine days later on May 3rd, 2012, just one day after being on the transplant list.
When you hear the word “hero” it is often accompanied by the names of Martin Luther King Jr., Abraham Lincoln, Susan B. Anthony, Rosa Parks and many more that we have read about or heard of through family/friend’s stories, the History channel, books, articles, or online. When I think of who my hero is, I don’t have to sift through memories or recall someone I learned about in Advanced Placement U.S. History class that I learned over a decade ago. I have part of an actual hero inside of my body! That is wild, and strange, and just completely mind-blowing to me that the surgeons at Yale cut me wide-open and put another person’s vital organ into my body, hooked-it all up, and that it works better than “my own” liver that I was born with. Crazy.
Waiting for a donor organ can be a very stressful experience, since you have absolutely no idea when a matching donor will be available or if it will be available in time. I met a gentleman several weeks ago who waited for 5 years, and experienced 14 false calls and trips to the hospital after being #1 on the transplant list before he actually had a successful match. Can you imagine being told 14 times there was a potential transplant available for you, busting your ass to get to the hospital, to only be let down to know it wasn’t a match, and not knowing if/when a possible match would ever come in time!? I was officially on the transplant waiting list on a Monday and received my transplant on that Wednesday, the same day that I made it to #1 on the list! That is practically unheard of! Just another remarkable miracle that the angels were on my side, as you can see the median wait for each organ is listed below (http://organdonor.gov/about/transplantationprocess.html):
Everything about a transplant is amazing and I want more than anything to be able to somehow express to my donor’s family how each and every night before I go to sleep I thank their son/daughter, boyfriend/girlfriend/ wife/husband, brother/sister, cousin, niece/nephew for my life. I thank them because they have not just given me a vital organ necessary in order for me to live, but they have given me patience, strength, and courage. They have taught me to appreciate all of the small things that I once easily overlooked. They taught me that time is too precious and to become more adventurous and committed to try new things. I have become more involved with the community, and I am actively trying to do little things that will hopefully one day add-up to bigger things and one day change people’s lives. I was not just given a liver, I was given a purpose.
I have a part of this hero inside me, that saved my life, and I have no idea who it is. That “unknowing” definitely creates this void within me that I do not know if I will ever be able to fill, but just like many other transplant recipients, I wanted to write a letter to my donor’s family. I never in my life imagined having to write something under these circumstances, but it was a very difficult and emotional experience for me. After much struggle and tears I produced a very heartfelt, sincere, thank-you note that brought my family and even my social worker to tears upon reading it. I cry just thinking about it, let-alone writing it, because it made me feel almost selfish, because I had life, and I was writing to a family I knew nothing about, carefully selecting my words to express my gratitude for their generous act of kindness.
It has been almost six-months since I have sent my letter to my donor’s family, but I have not heard anything back as of yet. I do realize it has not even been quite a year since their loved one passed last May of 2012 and I am well-aware how emotionally tough that may be for their family considering how emotional it has been here on our end. I am aware that I may never ever hear a response and will always be mystified by the name of my hero, but I would be lying if I said I did not hope to one-day know who they were.
Of course one of the first things I wanted to do when I was well enough and some time had passed was to contact my donor’s family to express my genuine gratitude for their loved one’s heroic act, but it is not that simple. Being a donor is a confidential and all of their information is kept very private. There is a regulated process in which you can contact the family of the donor via the New England Donor Bank (NEDB). My social worker gave me the information to contact my donor’s family in which I wrote a letter and sent it to the NEDB. They then read it to see if it is fit to send. There is a very strict format as to not get too personal or give away too much of your information as to not give away your identity for confidentiality reasons. I had to make some minor adjustments and resend to the NEDB. Upon receiving an acceptable letter, the New England Donor Bank then lets my donor family know I have a written a letter. The family then chooses whether to receive the letter or not. If they do wish to receive the letter they than can choose whether to write back to me or not. If they do choose to write back to me, they write a letter and send it to the New England Donor Bank. The New England Donor Back then notifies me that a response letter has been written, which then I choose whether I would like to accept their letter or not. If both parties do have interest in meeting one-day then I believe they can do-so through a governed process. From what I have heard, it can be an awkward encounter since the act of donation may bring one party to feel grateful and indebted while the other may feel pained and anguished.
Whether the name and/or identity of my hero remains a mystery or not, they will forever be my greatest hero of all. I know it is probably hard for many of you to fully-understand what having a transplant and all of the other complications (including my two brain surgeries that ensued), and how they have forever changed my perspective on life and who I wish I be. All I really want is for just one thing I say sticks with you in a positive way, if not today, than somewhere down the road.
I have been a registered organ donor eight years before I got my transplant, just because my mentality has always been, “If I’m dead, what use do I have for my organs?” It was a very thoughtless process for me. Obviously, that is a personal choice of mine and I completely understand this decision might not be so easy for some people, and I respect other’s decisions in regards to organ donation, no matter what those decisions are.
What I do find very important is that you do make a decision either way, and act upon it. Say you actually do want to be a donor, but just haven’t gotten around to it. Just saying you want to be an organ donor and not taking the 3 minutes to register on-line frankly seems silly and lazy to me. You might potential save the life of somebody and positively influence 50 or more other people just by putting down your Words with Friends or Instagram for 3 minutes and by going to http://www.donatelife.net and becoming registered, officially.
On the other-hand, some of you may choose to specifically not become an organ donor for whatever reason it may be. One of the most common things I hear is that people believe they are not healthy enough or “too old” to be a donor. Another myth I’ve heard is that people do not wish to have specific parts of their body donated including their corneas or skin, so they do not register to donate at all. I have heard that many people do not want to donate organs because they they wish to have an open casket or be cremated. Another myth I have found out is that people do not register to be donors because they fear that in a life-or-death situation, that emergency medical personnel will not perform the necessary medical procedures in order to save their life, rather so their body can be used for donation! Finally, a myth that many may not be aware of is that you do not have to be dead to be a donor! That’s right, you can be a living-donor for a single kidney, the lobe of one lung, a segment of the liver, a portion of the pancreas, a portion of the intestine, or a portion of the pancreas.
It is perfectly fine to choose to not be an organ donor, but please make those decisions based on the facts, not the myths. While you may watch Dr. Oz every afternoon or have watched too many Holiday Inn Express commercials, you are not capable of diagnosing whether your organs are of satisfactory health level to be donated; only your doctors can. Even if some organs cannot be donated, others may be perfectly legitimate to donate to save someone’s life. Remember, between the various organs and and tissues in the human body, one person can save over eight lives and effect the lives of 50 or more!
Secondly, you can throw the “I am too old to be a donor” notion right out of the window. NO ONE is too old to be a registered donor. The oldest organ donor, to date, was a 99-year old cornea donor, and the oldest organ donor was 93 years old! Not only can you be ancient and still be a donor, but you can choose exactly which organs you wish to have or not have donated, it is not an all-or-nothing thing. Remember, it is your body and your decision is completely up to you! And yes, you can still have a normal funeral service with an open-casket and your body will not be “mutilated” as some myths falsely suggest.
If you are seriously ill, the number one priority of the medical team is to save your life! The emergency doctors and nurses working to save your life are separate from doctors who perform organ transplants, and organ donation is only considered if brain death has been determined, so no, they are not going to let you die so your body can be donated.
Finally, and one of the most amazing things you may or may not know about organ donation, is that you do not have to be dead to be a donor! As my time clock was winding down very rapidly last May, one of my best and most loyal friends, Jessica Fry, was about to get on a plane in South Carolina and fly up to Connecticut once she found out she was a potential match for my liver. If that is not a bad ass friend, then I don’t know what is. Luckily, just before I was about to make friends with the angels in the sky, one of the angels exchanged their life for mine. It apparently wasn’t my time.
Now that I have provided you with some information about Donate Life and organ/tissue transplantation, hopefully you have a greater understanding about organ donation and being a donor, and I encourage you to take the 3 minutes to register online at www.donatelife.net right now. I was extremely lucky, others are not as fortunate and die waiting for a transplant. Talk to your friends and family and ask them if they are registered donors. You have no idea what your someone else’s organs may do for you someday or how you might change someone’s life life my “hero” did. “Don’t wait. Donate.”
“A computer program matches donor organs with recipients based on certain characteristics. These include blood type, tissue type, height, and weight. The length of time the patient has been waiting, the severity of the patient’s illness, and the distance between the donor’s and the recipient’s hospitals also figure into who is the best match for a specific organ.”
117, 741 people are waiting for a transplant in the US (The largest football stadium in the U.S. holds almost 110,000 people)
18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
In 2010, 62% of living donors were women. The statistic is reversed for deceased donation.
In 2010, 67% of all deceased donors were White, 16% were Black, 13% Hispanic and 2.3% Asian.
As of December 2011, the national waiting list was made up of 45% White, 29% Black, 18% Hispanic, and 7% Asian.
Currently, more than 100 million people or 42.7 percent of individuals age 18 and older have registered to be organ, eye and tissue donors in the U.S.
The nation’s top percentage of donor include Alaska and Montana both with 79% and the lowest being New York at 13.3%. Other states include Connecticut 39%, Florida 34%, South Carolina 27%, North Carolina 53%.
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.
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 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.
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!
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