Check out my first PSA (Public Service Announcement! The PSA was for the American Liver Foundation’s Liver Life Walk of Fairfield County. The walk will be held on Sunday, September 29th, at Harbor Point, in Fairfield County. Registration begins at 9 am!
I have been chosen as one of the Liver Life Champions this year along with the extremely adorable little girl, Charlie! This is the second year that my team “Just Say Mo” will be walking at the event, but this year, being one of the Liver Life Champions, it really means a lot to me to have your support!
This was my speech prepared for the Liver Life Walk Kick-Off Event, at Harbor Point in Stamford, CT.
As Rocky Balboa once said, “You, me, or nobody is gonna hit as hard as life.”
I have been an athlete and seemingly healthy all of my life. I graduated with my BA in Communication Studies in 2007 from Furman University, in Greenville, SC on a full-ride to play Division 1 Women’s Golf. In March of 2012, five years later, I was still living in Greenville, SC in the midst of making a transition to St. Augustine, FL. I know plans can sometimes change suddenly, but I could never in my life envisioned how drastically my plans were about to change. No one could have!
In March of 2012, I was diagnosed with end-stage liver failure and I somehow had to digest that I might only have a couple of months to live and that my ONLY hope of survival was in getting a liver transplant. I never imagined having to deal with anything of this magnitude at only age 26, so I called my Aunt Caryn, because she always knows the right thing to say to me. “Aunt Caryn, I have been diagnosed with this rare disease that only 1 in a million people get, my liver is failing, and I need a liver transplant to survive.” Calmly, she responded, “Monique. Only one in a million people can play golf as well as you. You are going to have to take that focus you learned from golf and use it to getting better. You’re going to need a strong mind because you’re going to be fighting for your life.” My aunt said she would be there for me, and we could accomplish anything together, so from that moment on, I put on my game face, ready to brave this life-threatening challenge as best as I could.”
Everything happened so rapidly from there on out, and within a week my aunt and my cousin Rocco flew down from CT, picked me up in my car in SC, and we drove back up to CT. A week after I arrived in CT, I had my first liver evaluation at Yale-New Haven and was admitted to the transplant program on the spot. Within one week of being admitted to Yale hospital, I suffered internal bleeding, and I lost my pulse four times.
While the internal bleeding almost killed me, it did shoot me to the top of the transplant waiting list. The average wait time is 361 days for a liver, but on May 3rd 2012, not even two days after I was officially put on the transplant waiting list, I was a recipient of a matching liver! It was a phenomenon, but even before I got the chance to really celebrate this miracle, I had developed an extremely rare, extremely fatal fungal infection in my brain called invasive aspergellus. Invasive aspergellus in the brain has nearly a 100% mortality rate for immunosuppressed patients, so my only option for survival was to have a very risky brain surgery to remove the abscess. The surgical team was unable to remove the entire abscess out on the first attempt, so almost three weeks later I was under the knife again for an even riskier brain surgery. Imagine having three major life-saving surgeries in a matter of five weeks’ time–my body felt like I had been plowed over by a speeding Greyhound bus!
After spending most of the spring of 2012 in the hospital, I was finally discharged on June 14th to my grandparent’s house. While this was a huge day for me, I was still not off the hook, as a trace of the infection remained. A PICC line was put into my arm, so for 6+ hours a night, 7 days a week, I was on a very aggressive IV treatment of an anti-fungal agent called Amphotericin B. The Ampho is a very toxic agent, and my kidneys could only tolerate the drug for 7 weeks before it was causing too much harm. FINALLY, on August 3, 2012 I had the PICC line removed out of my arm and it was adios Ampho and hola road to recovery!
My family was informed that even if I did survive the multiple brain surgeries, there was a pretty good chance I could come out of surgery deaf, blind, paralyzed, or worst of all, dead. I definitely didn’t come out deaf, (even though sometimes I might wish I was deaf so I wouldn’t have to hear my loud Italian family, JK J). I am far from paralyzed. With a lot of hard work, I went from being bed-ridden and extremely weak to running my first 5K in May in 33:44:66. I am not completely blind. I did lose my peripheral vision to the right in both of my eyes from my multiple brain surgeries and can no longer drive a car, but that hasn’t stopped me from driving a golf ball as I just recently participated in the American Liver Foundation’s Charity Golf Tournament in July, where I won the long drive contest for the females. A few days later I shot a round of 80 from the white tees at Candlewood CC. Most importantly, I am not dead. My body, my mind, my emotions, and my soul went through so much in such a short period of time, but I have worked very hard physically, mentally, emotionally, and spiritually to get to where I am today, and because of that I am very much alive–perhaps the most alive and healthiest I ever been in my life!
Somehow, to medical disbelief, I am a survivor. Why? Well I don’t know exactly why, but I can tell you this. I had a very impressive medical team at Yale who was doing everything within their power to make sure I was leaving that hospital alive. I can’t go without saying I have the most amazing friends who even though most of them live 800 miles away from me, they checked in on me daily, sent me cards, and flowers, and gifts, and some of my friends even came to visit me from afar. My family was incredible. Every single day out of the 52 days I was at Yale, at least one (but usually more than one) member of my family made the hour long trip to Yale to be with me. I honestly wouldn’t be alive today if it wasn’t for my aunt Caryn and everything she has done for me, especially instilling in me that those one-in-a-million odds I was labeled with didn’t mean one-in-a-million victim, it meant one-in-a-million survivor.
Throughout this whole journey I had so many people believing in me. When you have an army of people supportive of you, constantly telling you that you are a fighter, that you’ve got this, you start to believe it. I was like Rocky Balboa, only I was in the ring battling death. Round after round I kept fighting, and fighting and like Rocky, every time I got knocked down, I got right back up. The verdict may not have ended in a knock-out, but what is most important is that I prevailed, and I am a survivor.
One year ago was the true beginning of my recovery, and now, by just looking at me, you would no idea I had a life-saving liver transplant or survived a deadly infection in my brain! I am living proof of a miracle, but that miracle wouldn’t be possible without the advances made in medicine over the past couple of decades. One-in-ten Americans (30 million) are currently living with liver disease, and anybody can be that “one,” and you never know when it could be you. That is why it is very important for us to come together and become educated about liver disease, raise awareness, and most importantly support the American Liver Foundation and Team “Just Say Mo” at the Liver Life Walk of Fairfield County! (For for more information about supporting me and my team “Just Say Mo” at the Liver Life Walk this year please visit this link.
I want you to remember, “Life ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. ” ~Rocky Balboa
“With respect to cerebral aspergillosis, there is a clear difference in outcome between immunocompromised and nonimmunocompromised patients, as shown in table 1. Among the 141 immunocompromised patients with cerebral aspergillosis, 140 died, a mortality rate of 99%. In contrast, only two of the 15 nonimmunocompromised patients died, a mortality rate of 13%.”(Denning, David W., “Therapeutic Outcome in Invasive Aspergillosis”, Oxford Journals. 23 September 1996. Pg 10.)
MRi pre-cranitomies (top) and post-craniotomies (bottom). The white identifies the infection, invasive aspergillus.
I often find myself researching online about a variety of things. Sometimes it is current events, or sports, other times I will check out what Justin Timberlake is tweeting or get caught in reading some trashy article about a Kardashian, but often times I get absorbed into reading about various things concerning my medical adventure this past year.
This past weekend while doing some periodic researching, I found a couple of very interesting statistics in regards to my medical diagnosis. If you know me at all, or have followed my blogging, you already know I survived a miraculous liver transplant one year ago this past May (of 2012).
After I successfully became a recipient of a new liver, you may also be aware that I had two major brain surgeries shortly after, and was once again a survivor. I defied every odd and belief presented to me and still to this day I am referred to as the “miracle child” by my doctors because honestly, there is no medical reason I should be alive today. My body which had no absolutely no time whatsoever to heal from the trauma of having a liver transplant just a couple of weeks beforehand to then be a victim to an immensely fatal and unheard of cerebral fungal infection is nothing short of amazing. You know I had the brain surgeries but do you know what for? Or why? Probably not, so I thought I would try to explain in using the least amount of “big doctor’s words” as possible.
When you have a transplant of any kind, your life has changed forever, including all of the little things that you commonly overlook such as where and what you eat/drink, your daily routine and habits that you just perform without thinking about. One new aspect of my daily routine that I had to incorporate after transplant was taking my immunosuppressant medications on-time, three-times a day. Yes, I have a weekly pill box and have my phone set on a timer so I can swallow my 20+ pills on-time each day (hey, that is down from 46 a year ago!) Nine of these pills I will have to take each and every day for the rest of my life. Six of the nine are called identified as “anti-rejection” drugs. What is an anti-rejection you might ask?
When you have a transplant of any kind, your body recognizes the new organ in your body as “foreign” and it’s natural response is to reject it just like it would any other foreign object in your body. In order to “accept” the new organ and not “reject” it you must take the anti-rejection medication prescribed by your doctor every single morning and evening on a 12-hour cycle. Once you have your transplant, you see your transplant doctor quite regularly, which mine is at Yale-New Haven, located about an hour away from me. You are scheduled for blood work and check-up appointments with your transplant team every week after your transplant for the first month so your doctor can closely monitor the level of anti-rejection medication in your blood. Too much of your anti-rejection in your blood can result in toxicity and too little can result in possible organ rejection. After the first month, you are reduced from getting blood work done to every two weeks, then to every three-weeks, then to every month, two-months, three-months, etc. A week from this Thursday I have an appointment at Yale to get blood-work and have my liver check-up in which this will be my “one-year” post-transplant check-up! After this appointment I will be “promoted” to only having to see my transplant doc every two-months. YAY!!
As I mentioned, after my transplant, I will be on anti-rejections for the rest of my life. Anti-rejections are classified as immunosuppressants. What is an immunosuppressant? An immunosuppressant is a substance that performs immunosuppression of (weakens) the immune system. Why would I need my immune system weakened? To not “reject” my liver. What does weakening my immune system do? A weakened immune system is more susceptible to infections or diseases that target the immune system.
Once I received my transplant, I was, and currently am on anti-rejections like all transplant patients are. My body was already extremely weak from just surviving a liver transplant, not to mention all of the medical complications including losing my pulse four times and being revived. My body, nor did I, have any idea that I was going to have to endure two crucial brain surgeries, that would once again perform some serious stress on my body without any time for recovery. Everything happened so unexpectedly where there was no time to sit down and realize how incredibly quickly everything was happening. It’s really not that far-fetched to to say my body was trying to recover from being run over by a truck, and personally I wouldn’t hesitate to say it felt like the truck ran over my slowly, backed it up, and ran over it a good two times more.
Staples in my head after my first brain surgery. That wasn’t so bad, with a little glitter I might look like I fit in for a Ke$ha music video. Bling, bling.
So why did I have two brain surgeries after my transplant? As I mentioned after my transplant I was very weak and also immunosuppressed. Also, to be noted, I was in the hospital for an extended period of time, exposed and vulnerable to all of the sickness and illness floating around in the air waiting to be caught. By being so weak, immunosuppressed, and surrounded by sickness, meant I wasn’t in the best position to defend myself from any illness that came within close proximity to me.
For my second brain surgery they shaved the hair down the middle of my head and my head and stitches were used instead of staples. This look, which I called the “Reverse MO-hawk” was a lot more noticeable than my staples.
With that being said, aspergillosis, is the most common fungus present floating everywhere in the world, through the air in the form of dust and present in mold. Typically, when it is inhaled it is not a threat and is destroyed by our immune system. You can probably see where I am going here. After my transplant my body was so weak, it could not destroy the aspergillosis as it got into my respitory system, then into my bloodstream, then up to my brain. Convenient right?
So after my transplant I was experiencing the most wicked headaches that I can even begin to describe, seeing flashing lights, and hearing voices which don’t exactly compliment my pounding, non-stop headache. Obviously, something isn’t right, so the next step was to get an MRI of my head to see if anything could be found. After a couple of unsuccessful attempts to get an MRI because of my resistance from the extreme pain and inability to sit still, finally it was discovered that aspergillosis has invaded my brain in the left occipital lobe.
No one really can easily say or spell invasive cerebral aspergilosis, so it is just much easier to refer to is an an abscess or infection in my brain. At this point docs have realized I have a very rare, and highly fatal fungal infection in my brain while my health is fading at a very rapid rate. Me, myself, and I have essentially “left the building” if you know what I mean.
So just shortly after receiving a liver transplant in which happened so unexpectedly yet in impeccable timing, I am now diagnosed with this shocking and terrifying diagnosis that no one has ever heard of. Luckily for me, as I mentioned, I had left the building mentally, but my poor family had just been through a very tough week emotionally after losing my pulse several times, barely getting a transplant before I kicked the bucket, and now they are being told I have this notably rare, and drastically lethal infection in my brain where the only option is to be invasive, and even then there isn’t too much medical hope for survival?!? I mean come on, what is going on here, an episode of Grey’s Anatomy? Unbelievable.
Even though I was out of it, and hardly “awake” my body must have known to turn-on “kick-ass mode”. All I remember is that I had gone to sleep with a headache one night, and two-days later when I woke up the date on dry-erase board was several days later than from when I last fell asleep. I also had tubes in my mouth which I didn’t have in when I last remembered going to bed. “Mo, you had a brain surgery.” What? I have no idea what you are talking about. I feel my head and there is still hair. I feel around and there are these little metal things all down the middle of my head. Holy shit, what is this bling in my head? Staples. Holy shit, I really did have brain surgery.
Encouragement, love, support, prayers, and positive attitude is what got me through.
It was explained to me, but it never really sunk in. I didn’t have much time for it to sink in because even though they had performed one brain surgery, a bit of the infection still remained. My neuro-surgeons had removed a good portion of the infection, but due to it’s location, there was a very serious risk that the second surgery could result in my inability to see, speak, or potentially be paralyzed, and that is only if I made it out of surgery alive. I was immediately put on a very aggressive treatment of hardcore anti-fungal agents.
My neuro-surgeon was very hesitant to operate a second time, but since the follow-up MRI showed no improvement, he would have no choice but to put the knife to my head for a second time. If I did make it out alive, the chances of blindness, speech loss, and paralysis were even greater than they were for the first brain surgery. The risks of this brain surgery was even greater than any of the other surgeries beforehand since it was going to be the third major surgery within a matter of five weeks. The next option, and only option at this point, was to perform a second brain surgery.
I was “aware” when I went into my second brain surgery, and I was “aware” when I finally awoke a day after the surgery. When I awoke, I was incubated and my neurosurgeon, Dr. Matouk, asked me my name. I wrote down “Mo” and Dr. Matouk was like, “No, that’s not right.” and my sister was like, “Yes, that’s right, that is her nickname that she goes by.” So then he asked me to read something from a far and write it down, so I did. He was in utter amazement. Within two-days after surgery, I was able to take a few steps and walk, slowly but surely hobbling along like a stiff piece of wood. Then I started progressing my physical activity a little bit each day and was doing “laps” around the ninth floor of the transplant wing. No one could believe it. I was ready to do more, walk more, but everyone was pretty much like, “let’s take it easy, you’ve been through a lot”.
“Take it easy”, has never really been a part of my vocabulary to be quite honest. By not taking it easy, and continually pushing myself physically and mentally each and every single day is one of the reasons why I have healed like I have. It would have been easy to feel and say, “poor me” “why did this happen to me?” But I didn’t. Instead, I saw where I was, I didn’t like what I saw or how I felt, and I said to myself, if you want to “look normal” again and not look like a lifeless patient who has been hit by a 16-wheeler, then you are going to have to work hard at getting better. Really hard.
I would think to myself, “Right now, physically, there is not much you can do, but be patient, and keep thinking you can do things Try a little bit further each day than you did the day before, and that is all you can do. If you can do that, while staying positive and not let the best of your frustrations get to you, you will be rewarded for your efforts one day.” So that is what I did, and this is where I am. I had a lot of people praying for me and my health, so many cards and letters and words of praise and encouragement. I was constantly motivating myself to get better so I could one day hopefully “be normal” again rather than be sick on the verge of demise. So far I am pretty pleased with how I basically stared death in the face and said, “Get the hell outta my way!” Seriously, I’ve got things to do, and people to meet, like Justin Timberlake : )
In the hospital post second brain surgery, June 2012 vs. May 3, 2013. I don’t even believe it sometimes.
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
April is Donate Life Awareness Month! Don’t forget to wear blue and green on April 19th!
April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors. Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart. I was twenty-six year old when I had my transplant. Twenty-six. If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the next election. That just did not seem possible to happen. To me?? Nahhhh…….
Ha. Well it happened alright. My life was normal, I seemed healthy, then the next thing you know I am jaundiced, blowing up like a balloon, and diagnosed with end-stage (IV) liver disease among a list of other things. Is this some sort of sick joke? How could this be? I was playing indoor soccer like two weeks? I’m not dying of liver failure, can’t be. After I smacked my face a few times and realized I wasn’t hearing some diagnosis from a scene on Grey’s Anatomy, I was like, “So where do we go from here, what can we do about it?” “Your only hope of survival is a liver transplant.” Seriously? A transplant? I asked how much time my liver had left, and I was told maybe a few months. (that was until my liver got nicked during one of my liver biopsies and then I got really, really sick, really fast).
I did some research and the average time a person waits for a liver is approximately one-year. I did not have a year. I was lucky if I had a couple of months. I was admitted to Yale New-Haven on April 24th, 2012, and received my transplant nine days later on May 3rd, 2012, just one day after being on the transplant list.
Dream. Believe. Donate Life.
When you hear the word “hero” it is often accompanied by the names of Martin Luther King Jr., Abraham Lincoln, Susan B. Anthony, Rosa Parks and many more that we have read about or heard of through family/friend’s stories, the History channel, books, articles, or online. When I think of who my hero is, I don’t have to sift through memories or recall someone I learned about in Advanced Placement U.S. History class that I learned over a decade ago. I have part of an actual hero inside of my body! That is wild, and strange, and just completely mind-blowing to me that the surgeons at Yale cut me wide-open and put another person’s vital organ into my body, hooked-it all up, and that it works better than “my own” liver that I was born with. Crazy.
Waiting for a donor organ can be a very stressful experience, since you have absolutely no idea when a matching donor will be available or if it will be available in time. I met a gentleman several weeks ago who waited for 5 years, and experienced 14 false calls and trips to the hospital after being #1 on the transplant list before he actually had a successful match. Can you imagine being told 14 times there was a potential transplant available for you, busting your ass to get to the hospital, to only be let down to know it wasn’t a match, and not knowing if/when a possible match would ever come in time!? I was officially on the transplant waiting list on a Monday and received my transplant on that Wednesday, the same day that I made it to #1 on the list! That is practically unheard of! Just another remarkable miracle that the angels were on my side, as you can see the median wait for each organ is listed below (http://organdonor.gov/about/transplantationprocess.html):
ORGAN
MEDIAN NATIONAL
WAITING TIME
Hearts
113 days
Lungs
141 days
Livers
361 days
Kidneys
1,219 days
Pancreata
260 days
Intestine
159 days
Everything about a transplant is amazing and I want more than anything to be able to somehow express to my donor’s family how each and every night before I go to sleep I thank their son/daughter, boyfriend/girlfriend/ wife/husband, brother/sister, cousin, niece/nephew for my life. I thank them because they have not just given me a vital organ necessary in order for me to live, but they have given me patience, strength, and courage. They have taught me to appreciate all of the small things that I once easily overlooked. They taught me that time is too precious and to become more adventurous and committed to try new things. I have become more involved with the community, and I am actively trying to do little things that will hopefully one day add-up to bigger things and one day change people’s lives. I was not just given a liver, I was given a purpose.
I have a part of this hero inside me, that saved my life, and I have no idea who it is. That “unknowing” definitely creates this void within me that I do not know if I will ever be able to fill, but just like many other transplant recipients, I wanted to write a letter to my donor’s family. I never in my life imagined having to write something under these circumstances, but it was a very difficult and emotional experience for me. After much struggle and tears I produced a very heartfelt, sincere, thank-you note that brought my family and even my social worker to tears upon reading it. I cry just thinking about it, let-alone writing it, because it made me feel almost selfish, because I had life, and I was writing to a family I knew nothing about, carefully selecting my words to express my gratitude for their generous act of kindness.
It has been almost six-months since I have sent my letter to my donor’s family, but I have not heard anything back as of yet. I do realize it has not even been quite a year since their loved one passed last May of 2012 and I am well-aware how emotionally tough that may be for their family considering how emotional it has been here on our end. I am aware that I may never ever hear a response and will always be mystified by the name of my hero, but I would be lying if I said I did not hope to one-day know who they were.
Of course one of the first things I wanted to do when I was well enough and some time had passed was to contact my donor’s family to express my genuine gratitude for their loved one’s heroic act, but it is not that simple. Being a donor is a confidential and all of their information is kept very private. There is a regulated process in which you can contact the family of the donor via the New England Donor Bank (NEDB). My social worker gave me the information to contact my donor’s family in which I wrote a letter and sent it to the NEDB. They then read it to see if it is fit to send. There is a very strict format as to not get too personal or give away too much of your information as to not give away your identity for confidentiality reasons. I had to make some minor adjustments and resend to the NEDB. Upon receiving an acceptable letter, the New England Donor Bank then lets my donor family know I have a written a letter. The family then chooses whether to receive the letter or not. If they do wish to receive the letter they than can choose whether to write back to me or not. If they do choose to write back to me, they write a letter and send it to the New England Donor Bank. The New England Donor Back then notifies me that a response letter has been written, which then I choose whether I would like to accept their letter or not. If both parties do have interest in meeting one-day then I believe they can do-so through a governed process. From what I have heard, it can be an awkward encounter since the act of donation may bring one party to feel grateful and indebted while the other may feel pained and anguished.
Whether the name and/or identity of my hero remains a mystery or not, they will forever be my greatest hero of all. I know it is probably hard for many of you to fully-understand what having a transplant and all of the other complications (including my two brain surgeries that ensued), and how they have forever changed my perspective on life and who I wish I be. All I really want is for just one thing I say sticks with you in a positive way, if not today, than somewhere down the road.
With our mayor, Mayor Boughton (Danbury, CT) at City Hall with the Donate Life flag which is raised for the month of April for Donate Life Awareness month (Left to Right: Mayor Boughton, my aunt Dana, me, my aunt Caryn, my grandmother Rose).
I have been a registered organ donor eight years before I got my transplant, just because my mentality has always been, “If I’m dead, what use do I have for my organs?” It was a very thoughtless process for me. Obviously, that is a personal choice of mine and I completely understand this decision might not be so easy for some people, and I respect other’s decisions in regards to organ donation, no matter what those decisions are.
What I do find very important is that you do make a decision either way, and act upon it. Say you actually do want to be a donor, but just haven’t gotten around to it. Just saying you want to be an organ donor and not taking the 3 minutes to register on-line frankly seems silly and lazy to me. You might potential save the life of somebody and positively influence 50 or more other people just by putting down your Words with Friends or Instagram for 3 minutes and by going to http://www.donatelife.net and becoming registered, officially.
On the other-hand, some of you may choose to specifically not become an organ donor for whatever reason it may be. One of the most common things I hear is that people believe they are not healthy enough or “too old” to be a donor. Another myth I’ve heard is that people do not wish to have specific parts of their body donated including their corneas or skin, so they do not register to donate at all. I have heard that many people do not want to donate organs because they they wish to have an open casket or be cremated. Another myth I have found out is that people do not register to be donors because they fear that in a life-or-death situation, that emergency medical personnel will not perform the necessary medical procedures in order to save their life, rather so their body can be used for donation! Finally, a myth that many may not be aware of is that you do not have to be dead to be a donor! That’s right, you can be a living-donor for a single kidney, the lobe of one lung, a segment of the liver, a portion of the pancreas, a portion of the intestine, or a portion of the pancreas.
It is perfectly fine to choose to not be an organ donor, but please make those decisions based on the facts, not the myths. While you may watch Dr. Oz every afternoon or have watched too many Holiday Inn Express commercials, you are not capable of diagnosing whether your organs are of satisfactory health level to be donated; only your doctors can. Even if some organs cannot be donated, others may be perfectly legitimate to donate to save someone’s life. Remember, between the various organs and and tissues in the human body, one person can save over eight lives and effect the lives of 50 or more!
Secondly, you can throw the “I am too old to be a donor” notion right out of the window. NO ONE is too old to be a registered donor. The oldest organ donor, to date, was a 99-year old cornea donor, and the oldest organ donor was 93 years old! Not only can you be ancient and still be a donor, but you can choose exactly which organs you wish to have or not have donated, it is not an all-or-nothing thing. Remember, it is your body and your decision is completely up to you! And yes, you can still have a normal funeral service with an open-casket and your body will not be “mutilated” as some myths falsely suggest.
If you are seriously ill, the number one priority of the medical team is to save your life! The emergency doctors and nurses working to save your life are separate from doctors who perform organ transplants, and organ donation is only considered if brain death has been determined, so no, they are not going to let you die so your body can be donated.
Finally, and one of the most amazing things you may or may not know about organ donation, is that you do not have to be dead to be a donor! As my time clock was winding down very rapidly last May, one of my best and most loyal friends, Jessica Fry, was about to get on a plane in South Carolina and fly up to Connecticut once she found out she was a potential match for my liver. If that is not a bad ass friend, then I don’t know what is. Luckily, just before I was about to make friends with the angels in the sky, one of the angels exchanged their life for mine. It apparently wasn’t my time.
Now that I have provided you with some information about Donate Life and organ/tissue transplantation, hopefully you have a greater understanding about organ donation and being a donor, and I encourage you to take the 3 minutes to register online at www.donatelife.net right now. I was extremely lucky, others are not as fortunate and die waiting for a transplant. Talk to your friends and family and ask them if they are registered donors. You have no idea what your someone else’s organs may do for you someday or how you might change someone’s life life my “hero” did. “Don’t wait. Donate.”
There are many other myths, that you probably don’t know, but I will leave that up to you to research. Below are some statistically information about organ donation and transplantation that you may find interesting, which you can find on this website: http://www.organdonor.gov/about/organdonationprocess.html#process6
“A computer program matches donor organs with recipients based on certain characteristics. These include blood type, tissue type, height, and weight. The length of time the patient has been waiting, the severity of the patient’s illness, and the distance between the donor’s and the recipient’s hospitals also figure into who is the best match for a specific organ.”
117, 741 people are waiting for a transplant in the US (The largest football stadium in the U.S. holds almost 110,000 people)
18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
In 2010, 62% of living donors were women. The statistic is reversed for deceased donation.
In 2010, 67% of all deceased donors were White, 16% were Black, 13% Hispanic and 2.3% Asian.
As of December 2011, the national waiting list was made up of 45% White, 29% Black, 18% Hispanic, and 7% Asian.
Currently, more than 100 million people or 42.7 percent of individuals age 18 and older have registered to be organ, eye and tissue donors in the U.S.
The nation’s top percentage of donor include Alaska and Montana both with 79% and the lowest being New York at 13.3%. Other states include Connecticut 39%, Florida 34%, South Carolina 27%, North Carolina 53%.
6 hour+ IV of Amphoteracin B and sodium chloride each night for 7 weeks
When I was released from Yale’s care on June 11, 2012 I had to continue my treatment of Amphoteracin B intravenously. Amphoteracin B, is used to treat serious, life-threatening fungal infections, like the invasive aspergellus that was discovered in my brain post-liver transplant. Walgreens delivered this piece of you-know-what, retro-looking machine where it’s prime days were clearly back in the early 1980’s. So for 6+ hours/night (more like over 7 hours/night, I was hooked up to this god-awful machine that I named “Baxter” (the bastard). My treatment, for the most part was administered predominantly by my grandfather (whom mind you, has absolutely no medical training), he was raised on a farm in Canada and made it through the sixth grade. Not exactly a PhD in medicine. Awesome.
In an attempt to combat the extremely rare, and life-threatening infection in my brain (invasive aspergellus), my only option was to undergo a very aggressive antifungal treatment both intravenously and in pill form. Each day I took 12 pills/day of Voraconizaole, and in the evening, I was hooked up to that very out-dated IV machine, “Baxer,” for over six hours/day receiving the very undesirable Amphoteracin B pumping through my veins. Not only was it “Amphoterribile” I went on to call it, “Amphoterrorist” because it felt much like medical terrorism. The Ampho is probably not like any other IV you may be familiar to; it is very toxic and most people have a lot of difficulty tolerating Ampho and it’s side-effects.
There was somewhat a degree of stress and pressure lying in the Ampho treatment, because if it did not do its job, or if I was unable to tolerate it, then the end result was not favorable. Then you have to go on and consider the fact that my grandfather and I are by no means registered nurses (even though after this experience we are on our way). We have no prior medical “experience” and when you really think about it, that is a quite a bit of pressure to be given the responsibility to properly and accurately administer this IV, where mistakes could result to serious, serious consequences to my health, as serious as death.
When my family and I were first getting acquainted to hooking me up to “Baxter,” it was an utter disaster. The very first night home from the hospital, the visiting nurse came to show my family and I how to hook-me up to the machine. She didn’t leave until after 1:00 am and my grandfather stayed up until 3:00 am, five hours past his regular bed-time. I was in-and-out of sleep while the nurse was trying to hook-me up and give my grandparents the tutorial for what they would be having to do from here on out. Instead of doing a simple step-by-step visual she got us all so confused. When I say confused, I mean really, really confused. She herself was even became somewhat confused because the machine was so out-dated and complicated by poor instructions. Luckily, I have several family members nearby who are RN’s so they were able to come over several times in the first couple of weeks to get me familiar with the IV machine. The nurses in my family taught my grandfather how to properly set up “Baxter”, but even then, we still had our daily troubles with that obnoxious machine.
My grandfather, Poppy Emilio, had to learn how to work my IV of Amphoteracin B at-home each night.
My Poppy Emilio is a very hands-on, project kind of man, so when the IV came home with me, I think he saw it as a new project to keep him occupied. He was pretty much my nurse at home. It was cute how Poppy stepped up to the role. Every time he would flush out the line, when he was testing it to get the air out, he would pull the syringe back a little too far, and then when he pushed the syringe forward, the sodium chloride would shoot out of the tube quite a distance, and Poppy would go, “Ooops” and we would both giggle and I would say something like, “Woah, that was a good one!” My grandmother, Mum, would roll her eyes back and give Poppy this look that pretty much said, “you ass.” For some reason I found this pretty hysterical, and so then each time Poppy was flushing my line he would do this, I think just to make me laugh. He of course, would be laughing too and my grandma would just be shaking her head at both of us.
Poppy and I were starting to think we know how to work this damned machine, but just when we thought we had it all figured out, something would happen. Every. Single. Damn. Day! Poppy is a very smart man, he can build and fix almost anything including a house, so I’m thinking, sure he can work this IV machine, no problemo. Well, maybe not. That machine had all of us swearing up-and-down every single day of the seven weeks that I was hooked up to it. “Baxter the Bastard” is what I ended up calling it. Even though I will say “Baxter” was a big ole’ pain in the ass, I definitely bonded with Poppy Emilio while I was on the IV since we spent so much time together swearing at it.
The visual directions were on “Baxter” were very misleading, and even though we were shown on more than one occasion to work the IV machine, I don’t know how many times we still plugged the tubing into the machine in the wrong direction. Once I thought I was going to have a heart attack, we had it hooked up, I look over 10 seconds later, and I’m like “WHY is there BLOOD coming up the tube!!” Yeah, the picture on the machine is totally deceiving, it makes it appear like it is going in the opposite way that it should be going, and so instead of dripping my antifungal treatment in, it was sucking my blood up. I think it took several weeks for us to get that down without any mistakes, but after a few weeks under our belt, Poppy was a champ at working my IV, and a few weeks after that, I was doing it all alone by-myself (Nurse Moski in the hizzy, what, what!)
When we first were getting used to setting up the IV on our own, we made mistakes like the one shown above every single day.
During my treatment hours, I first received sodium chloride intravenously for two hours to ensure that I was hydrated, two hours of the Amphoteracin B, and then two more hours of hydration to flush out the toxins. At this point in time I was also having to drink a minimum of three liters of water/day! So add up the three bags of fluid/medication I was getting pumped with three more liters of water and you can imagine I spent a lot of time wheeling my way to the bathroom to pee. On top of that I was getting up to pee a minimum of 5 times in the middle of the night. If you include all of the time to switch between fluid and medication back to fluid, it was taking seven hours or more a night when we were first learning how to work the machine since we had so much difficulty. Seven hours a day, seven days a week. And you wonder why I called it “Baxter the Bastard.”
Each night before I started the Ampho treatment I had to take one Benedryl and two Tylenols (regular strength because since I have a new liver, I am limited on amount of acetaminophen I can take). Why did I have to take these before taking a medication? Because the Ampho is a monster of a drug. It is often referred to as having “Shake and Bake” symptoms for its shaking chills and fever, nausea, and vomiting.
“Amphotericin B is well known for its severe and potentially lethal side-effects. Very often, a serious acute reaction after the infusion (1 to 3 hours later) is noted, consisting of high fever, shaking chills, hypotension, anorexia, nausea, vomiting, headache, dyspnea and tachypnea, drowsiness, and generalized weakness. (“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
From mid-June through the first week of August, I was on the ampho at-home. I was only on it for so long, because I surprisingly tolerated the drug so well. Even though my body was “tolerating” it, there were plenty of horrible side-effects that I do not miss for even one second. For instance, it was summertime, 80-90 degrees outside and II was usually wrapped up in several blankets and still shaking because I was so cold. My body was aching, I was in a completely drowsy in a fog, in-and-out of sleep usually woken up for dinner that I could hardly even eat. I had absolutely no appetite but would try to eat at least half of my plate just because I knew I had to. I was drinking over 3 L of water a day, plus being pumped with two bags of sodium chloride and one bag of ampho each night, so there was not much room for food. Add on being extremely weak and utterly exhausted, it was a chore to do simple, minor things like going to the bathroom. Stairs? Ha. I couldn’t go up-or-down more than three stairs for over a month.
“Organ damage is also distressingly common, and patients who are dying of a systemic fungal infection can suddenly find themselves dying instead of kidney or liver failure.”(“Nasty Drug Molecules: Amphoteracin B.” Derek Lowe, PhD, Organic Chemistry, Duke Univ. 10/8/12)
The ampho treatment was no guaranteed fix, and cast aside the side-effects it was having on my body externally, it was also doing notable damage to my body internally. Ampho is a toxin, so it’s main function was to terminate the aspergellus, but mind you, it is still a toxin, so while it was killing the fungus in my brain, it was also damaging my kidneys. I had to get bloodwork 1-2 times per week in my early weeks of discharge to closely monitor my blood levels. While I was being treated on the Ampho, my kidney numbers began to steadily climb, as expected. The question for docs day-in-and-day out was, we have to get the fungus out of there, but how much Ampho is necessary to kill the fungus yet not enough to cause an even worse threat on the kidneys? Living with the aspergellus in my brain, even a tiny little bit, is and was not an option at all. It is fatal; it had to be gone. The kidneys, you can compromise their function somewhat in order to purposefully be treated with the Ampho, but my docs had to closely monitor, and make sure it wasn’t causing my kidneys to reach toxic levels. Finally, after about seven weeks on the Ampho, my doctors finally came to agreement that was enough of it to my body, and from there-on-out we would solely rely on the Voroconazole to do it’s thing and fight the remaining little bit of the infection.
Describing Amphoteracin B as “awful” is an understatement in my opinion. I wouldn’t wish that treatment on my worst enemy. It was what I had to do though. Even though it made me completely and utterly miserable for 6-7 hours a night, I sucked up all of my hatred for it, put my game face on, and got through it. The day the visiting nurse came to take the IV out of my arm and to stop the treatment was one of the most exciting days in my life. Even though I was really weak, you can be damn sure I found the strength to roll that thing outside and down the two front steps and put it in the grass by the drive-way so as soon as they visiting nurse pulled up, I was ready to shove that thing in the car. Yup. She was laughing and said, “You’re ready to get rid of this huh?” I was like, “You better believe it, get it out of here, I never want to see that thing again!”
It was so harsh and cruel on my body, but yet was necessary to saving my life. Dear Ampho, thanks for saving my life, but man, I really hated you and I hope we never meet again! While I’m pretty sure it is safe to say you probably never in your life have to go through the “Amphoterrorist” treatment like I did, I’m sure there is something in everyone’s lives that that just don’t want to do, or hate doing. You’re not going to be able to escape bad situations all of the time, but what you can control is your attitude. While Baxter was quite the bastard, and while I did feel like I was enduring medical terrorism, I am thankful for what it did for me physically and mentally. Physically, it did a great job of getting rid of the infection in my brain, that I wouldn’t have been able to live with. Mentally, this just added one more thing to my list of bad ass accomplishments. Liver transplant. Check. Brain Surgery. Check. Another brain surgery. Check. Eight weeks of Amphoteracin. Check. The killer is it hasn’t even been a year yet? And I’m healthier than ever! I just recently accomplished a 41-minute interval kick-ass workout and walked four miles yesterday! That is a little bit crazy to me considering the previous June I had to use a walker and couldn’t walk up or down a flight of stairs. It is hard to believe, even for myself, but what I can say is just believe you can do anything. Visualize it, see it in your head, and guess what? It is possible. Look at me. I’m a breathing, living, walking example that miracles are possible. They are not just going to show up at your door though. You might be presented with a miracle of your own one day, but everything about it isn’t going to come easy, you are going to have to grind, and work hard, but I promise it will all be worth it, you just have to believe!
“I am strong because I have been weak. I am beautiful because I know my flaws. I am a lover because I am a fighter. I am fearless because I have been afraid. I am wise because I have been foolish. And I can laugh because I’ve known sadness.” ~Unknown
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
Grateful: a) feeling or showing an appreciation of kindness; thankful b) expressing gratitude Satisfy:a) to make happy, to please; b) to gratify to the full; appease
Overall, the last two months have been, for the most part, pretty busy and entertaining for me. After the holidays were over and January rolled around, I went to St. Augustine, FL to visit my mom, step-father, and to surprise my little sister for her 25th birthday for about a week. While I was there, my grandparents came to visit, and then I rode with them back to their winter home in Fort Meyers and stayed an additional week. The following weekend after returning from Florida, I went up to Boston for a short weekend to spend time with a few of my friends from college who live decently close to each other. The weekend after that I went to the Mohegan Sun Arena in Uncasville, CT and saw Bon Jovi put on a 2-hour kick-ass live show…for free! I can definitely agree that January and most of February were rather eventful months for me. The last few weeks, on the other hand, have been more on the dull and uninteresting side. I am not complaining, just stating facts.
I’ve been basically confined to the house with sporadic modes of transportation available to me here-and-there (depending on my family member’s schedules’), and it has begun to start to put me a little-bit “on edge”. I absolutely believe I do a great job of finding ways to entertain myself and keep my mind busy. I am also rather physically active, circumstances considered, which keeps me entertained frequently. Still, it is unfortunately starting to wear away at me a bit; not having my independence that is.
I have noticed I have been getting very frustrated. Frustrated that I can’t drive. Frustrated that when I need to go somewhere that I need to find a ride. Frustrated that I usually can’t be alone when I’m shopping, or alone at all sometimes. Frustrated by all of the brotherly teenage bickering and yelling and farting. My only “escape” is the room I stay in, but it is still not fully excluded from everything considering it is household public-access to the mini-office, work-out, and playroom.
This blog is not about me bitching up a fit. This blog is about me realizing and sharing the true difference between what being grateful and being satisfied is. Yes, I am frustrated that I cannot drive, but I am extremely grateful that I have enough of my vision field to still do many things. Yes, I get frustrated always having to depend on a ride, but I am grateful that I have family that is willing and kind enough to drive me around. Yes, I get very annoyed when the boys are loud and fighting, and when there never seems to be a moment of “fresh, clean air” while either of them are in the room if ya know what I mean, but, still, I am grateful to have them as my “brothers”. Yes, I am frustrated that I used to live independently and now I feel like I am somewhat re-living my early teenage years, but I am grateful that my family has allowed me to be a part of their home, grateful to call them my family, and above all, I am grateful to be alive.
Today in the shower, as my mind was racing, “What is wrong with me? What is your problem Mo? Why are you on such a short-fuse so much lately? C’mon get it together Mo.” I kept thinking and asking myself questions, and thinking some more. I came to the conclusion that I am gratefulfor everything and everyone in my life, butI am not satisfiedwith my life and that there is a difference.
Well, what is the difference between being grateful of your life and being satisfied with it? The difference, for me at least, is I am so very appreciative of my life and that I have been given a second chance to make it satisfactory and fulfilling, but I am currently not fully satisfied with it. Yes I am alive, but I want to be living;not trapped.
Not being able to drive does restrict my freedom and independence more than I would have ever thought, but I have been making-due. The problem is I don’t want to “make-due.” That has never been a mind-set of mine, and I don’t want to be content with “making-due.” Ever.
I dream of being on my own, having a career, living in my own house, driving my own car, etc. Not that I want to be alone all-of-the-time, I just dream to simply have my independence back. I’m 27 and I live with my aunt, uncle, and cousins and the closest thing to my old “Mo-bile” now is riding shot-gun in my grandma’s Toyota Camry…with my grandma. The luxury of “leaving and going as you please” doesn’t seem like a luxury until you have it suddenly snatched away from your feet. I know “independence” is what I want, but how do I get it? I went to the mall the other day and I didn’t see anything on sale for “Independence.” Purchase now and your first 3 months are free!” Haha, I wish.
So, since “independence” isn’t for sale, how am I going I take my dreams and put them into an active game plan? This can be tricky for my particular situation, because some of my goals are somewhat dependent on my medical progress, doctor’s diagnoses, etc. My goals aren’t like, “I want to lose 10 lbs.” or “I want to run a 5K.” While some of my goals are indeed like those, the ones I am talking about now are much different, such as, “I want to be able to see” and “I want to be able to drive”. The only control I really have with goals like these is to just continue keeping-up with all of my doctor’s appointments, medications, staying healthy, and thinking positive. After that, I am not sure if there is anything else I can do, but just patiently wait.
I often wonder what other people would do and how they would react if they were in my shoes. The reason I wonder, is because I am constantly in conflict with myself, and always looking for more, and I wonder is that normal or not? Then I question should I be satisfied with how things are? Is it bad that I am still not yet satisfied with my life? With all said and done, I did get a liver. I survived two serious brain infections. I am healthy. I am alive. I have wonderful friends and family. Is it selfish of me, that I want more for my life than just being grateful and awake each day? I want to be satisfied.
I would be satisfied if I was living every moment to the absolute fullest I could each day. I know that isn’t possible due to time and monetary restraints, but this doesn’t stop me from trying. I will steadily plug away each day at my goals until I get to where I want to be. The problem is, I am never completely satisfied with where I am at, and I always want more. Mo, always wants mo’–I am always trying to out-do myself in whatever it is I do. I am my own worst enemy, and whether that is a good or a bad thing, I have yet to determine.
In one way, I believe it is a great thing, because I’m always trying to work harder, to make things better than they were before. Settling is not in my vocabulary-for anything, or anybody. On the other hand, sometimes I think I’m ready to do things, but my body is not, I push anyway, and I end up setting myself back a tiny-bit further from where I began. It is vicious cycle of balancing, and that is something I have gotten much better at, yet still have plenty of room for improvement.
The truth of it all is I really don’t know what will make me truly satisfied? Will I ever be able to get to a point where I can say, “That’s it? I am here and this is the best life can possibly be.” Who knows? But ya know what? That is okay because it keeps me continuously working hard at my goals. When I’m working hard at my goals, trying until I can’t try any more, that is the one thing that I do find satisfactory in my life. That feeling that I’ve done everything I could possibly do, leaving no room for excuses. It is a hard feeling to get to, especially with me since I am never satisfied ; )
“People who are unable to motivate themselves must be content with mediocrity, no matter how impressive their other talents.” ~Andrew Carnegie, American Industrialist & Philanthropist
“Motivation is what gets you started. Habit is what keeps you going.” ~unknown
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).
I don’t know about you, but it’s not the end of the world for me; I’m just a few minutes into the second quarter and I’ve got more than 2 quarters left to play. I’m an underdog and I will fight my hardest until the end. The REAL END. Not this past May, not yesterday, but for years to come. I might not win every game, in fact I will lose many, but in the end I plan on taking home the championship, and that is all that really matters.
“I’m gonna stop lookin’ back and start movin’ on
Learn how to face my fears
Love with all of my heart, make my mark
I wanna leave something hereGo out on a ledge, with out any net
That’s what I’m gonna be about
Yeah I wanna be runnin’
When the sand runs out”
“Give me love
Give me love
Give me peace on earth
Give me light
Give me life
Keep me free from birth
Give me hope
Help me cope, with this heavy load
Trying to, touch and reach you with,
heart and soul”
My thoughts and prayers go out to the 26 victims, their families, and our grieving neighbors nearby in Newtown, CT. Teachers and staff of Sandy Hook Elementary risked their own lives to protect their students from an act of pure evil. Even with their heroism, twenty young and completely innocent children had their very short, and unfulfilled lives swept away from them forever without any warning. May their souls live in a better place than this cruel and selfish world.
That 14th day of December was a horrific and heartbreaking day and shall forever serve to remind every single one of us that life is not guaranteed for anyone of any age. Let the ones you love know you love them, for nothing is a certainty, and tomorrow is not guaranteed. To my family and my dearest friends, I love you with all of my heart, each and every day, and myself included, sometimes need to step back for a moment and really appreciate all of the beautiful and loving people in my life.
“Love life and life will love you back. Love people and they will love you back.” ~Arthur Rubinstein
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
Hello family, friends, acquaintances, and everyone in between:
I have been asked by family and friends alike to start several different projects in regards to my personal journey that began this past spring of 2012. Surviving two life-saving craniotomies after a last minute liver transplant, gives me a lot to talk about. I am finally well enough to put my words into action, and so here I begin.
My journey has hit every up-and-down, and all-around you can possibly wrap your head around, but, thankfully I am here now today to share my story. Through everything that has happened to me and my family in the last half-year, I have learned a lot about the true meaning of friendship, family, and what life really is all about. I plan to share some of my experiences, my thoughts, and my visions (along with the assistance of some of my friends and family who can recall things that I can not). If my blog does nothing for you, that is okay by me, I’m just here doing my thing, and you have the right to do your thing. If what I say or do can help you better who you are or what you do in any way, well, then that is well worth writing every bit of this : )
Much Love,
Mo
I completed the 3 mile Liver Life Walk, held in Stamford CT on September 30, 2012
Just Say Mo Foundation 