How Organ Donation Has Saved My Life

April is Donate Life Month!

 

“You were born with the ability to change someone’s life.  Don’t ever waste it.”  ~Unknown

April is Donate Life Awareness Month, so for the month of April I will be raising awareness and sharing stories about organ donation and how it has saved my life, and the lives of millions of others.

On May 3, 2012, I received my life-saving liver transplant from an anonymous donor, forever changing my life.  I am not only beyond grateful for this second chance at life, but I am also thrilled at the opportunity to make a difference in other people’s lives by inspiring others to become registered organ donors.

Since my liver transplant, which occurred two-years ago (this May 3rd), I have run in five 5Ks and broken 80 several times on the golf course.  I’ve gone to see Justin Timberlake, Bon Jovi, Taylor Swift, Jason Aldean, and FL/GA Line perform live. I had the honor of meeting Mr. Shark Tank, Mark Cuban, at my best friend’s wedding to NHL Dallas Super “Star” Mike Modano. I have also proudly been the American Liver Foundation’s Liver Life Champion in which I have given several public speeches about my story and also filmed a Public Service Announcement in efforts to raise awareness about the life-saving benefits of registering to be an organ/tissue/blood donor.

Mark Cuban came up to me and said, "Hi Mo. Mark Cuban.  Mike has told me so much about you..." at my best friend Allison Micheletti's wedding in Dallas, TX in September of 2013.

Mark Cuban came up to me and said, “Hi Mo. Mark Cuban. Mike has told me so much about you…” at my best friend Allison Micheletti’s wedding in Dallas, TX in September of 2013.

This summer, I will be competing nationally in my first Transplant Games of America, against other transplant recipients and donors in golf, 5K, and two other sporting events of my choice!  Also this summer, my childhood dreams will finally come true when I get to see Justin Timberlake perform live at the Mohegan Sun Arena, in Uncasville, CT ūüôā

None of this would be possible if it wasn’t for an anonymous donor who decided one day to check “yes,” yes, I will be a registered organ donor.  That is it, one simple, effortless “yes” which at the time meant probably nothing to him/her, but that one little “yes” has allowed me to do all of the great things that I have mentioned above.

Growing up, I was very determined, hard-working, and had a relentless passion to succeed.  The drive I innately had as a youngster began to fade and transform into uncertainty and doubt mid-way through my collegiate career.  After I graduated from college, I felt very lost in direction and in purpose.  My purpose in life was nothing but unclear, habitually wreaking  havoc within my soul.    Somewhere along the round I had fallen into a repetitive routine of nothingness.  “What am I doing with my life?” I wasn’t pursuing my dreams, and I was not engaging or a part of anything that felt fulfilling and made the heart and core of myself smile.  Maybe perhaps it was no coincidence that I became fatally ill, because honestly, my soul had felt dead for years.

On May 3, 2012 I had my life-saving liver transplant from an anonymous organ donor.

On May 3, 2012 I had my life-saving liver transplant from an anonymous organ donor.

In March of 2012 I diagnosed with stage-4 Liver Cirrhosis, with the initial diagnosis due to Budd Chiari and Factor V Leiden.  I oddly didn’t see my diagnosis as a misfortune, rather, I saw it as an opportunity–an opportunity to change my life, an opportunity to regain my purpose, and an opportunity to impact the lives of others.  My illness resparked my drive and passion to succeed; it lit a fire under my inner competitor, and my inner competitor perceived my illness as a challenge. This wasn’t your routine challenge though, I was facing undoubtedly one of the toughest and most fierce competitors l have ever had to face: I was up against death.

During my liver biopsy at Yale, my liver was accidentally “nicked” which caused unnoticed internally bleeding until one evening on the way to the bathroom, I just collapsed.  “Code Blue! Code Blue!” I could faintly hear as my eyes shut. Several episodes of cardiac arrest ensued with the likelihood that my last days were behind me if a liver match was not found in the next 24 hours.  With the National Average wait-time for a liver match being 361 days, it seemed like I was going to need a miracle to survive. You may not believe in miracles, but You might want to start.

Within 24-hours of my death-defying experience, my medical team at Yale-New Haven started prepping me for liver transplant–word had gotten out there was a potential matching donor for me.  The stars aligned in my favor, and on May 3, 2012, I was a recipient of a last-minute, life-saving liver transplant from an anonymous organ donor.

While it was amazing when I had finally awoken from the anesthesia to find out that I had a liver transplant, I did not have much time to be grateful before complications from the transplant unfolded.  A fungal infection, known as invasive aspergillosis, had manifested within my respiratory system, travelled into my bloodstream, up to my brain, and manifested into a serious and highly fatal infection.  My body was too weak from surgery and immunosuppressive medication to battle the infection at its infancy stages like a “normal” person’s immune system would have, and so it aggressively started to cause destruction in the occipital lobe of my brain.

Invasive aspergillosis in immunosuppressed patients has a an extremely high mortality rate, approaching near 100%.  Despite these odds, my medical team worked very hard at keeping me alive.  I underwent two extremely risky brain surgeries combined with intensive six-seven hours of invasive anti-fungal treatment every night for several months.

Whether the brain surgeries and anti-fungal treatment would save my life was a question that even the top medical surgeons in the country at Yale didn’t know the answer to.  All we could do was give it our best shot, pray for a miracle, and sit back and see how my destiny would unfold.

After the second brain surgery at Yale to remove a fatal fungal I acquired in my brain as a result of a weak immune system post-transplant.

After the second brain surgery at Yale to remove a fatal fungal I acquired in my brain as a result of a weak immune system post-transplant.

According to medical statistics and previous transplant patients who have acquired invasive aspergillosis in their brain, it is utterly unjustifiable as to why I am alive today.  While the statistics and my doctors may not be able to explain why or how I became so ill, so quickly, or even how or why I have survived these several life-threatening illnesses and surgeries all back-to-back-to-back in such a short time, all I do know for certain is that I am thankful.  Thankful for my family, thankful for my friends, and most importantly thankful for my donor, their family, and their generous donation.  The whys and hows of my survival really don’t matter; what matters is that I am alive, I am doing fantastic, and I am ready to change the lives of others.

My story of survival is one that I believe all throughout the world need to hear. I am living-proof of the life-saving benefits of organ donation. Because my anonymous donor was registered as an organ/tissue donor, his/her selfless act saved my life along with saving or enhancing the lives of 14 others on that third day of May. Currently, 18 people die each day because there is a shortage of registered donors on the list.  Eighteen people every day, thousands each year, could be saved and have a second chance like I did, if we all checked “Yes, I want to become a registered organ donor.”  One organ donor can save up to eight lives and enhance the lives of up to 50 people!  A swift check of “yes” is all it takes to saves lives and be a hero to someone and someone’s loved ones.

Before my liver transplant and brain surgeries in May/June of 2012.

Top: Before my liver transplant in May 2012.  Bottom: April 2013, a bridesmaid at my best friend’s wedding, and Sept 2013, cutting the ribbon to kick-off the 2013 the American Liver Foundation’s Liver Life Walk in Stamford, CT.

You might be supportive of organ donation, but are you a registered donor?  As Benjamin Franklin once said, “Don’t put off tomorrow what you can do today.”  Don’t wait, donate. 

For more information about organ donation and becoming a registered donor, please visit these websites:

UNOS-United Network for Organ Sharing  www.unos.org

Donate Life America-www.donatelife.net

Watch my video and see exactly how organ donation has saved my life “The MOtivational MOvie” which shows my two-year journey of having a life-saving liver transplant, brain surgeries, and my life as a survivor.

 

HOLE-y MO-y

“Acceptance of what has happened is the first step to overcoming the consequences of any misfortune.” ~William James

Two-years ago around this time I was diagnosed with Stage-4 Liver Cirrhosis initially diagnosed due to Budd Chiari and Factor V Leiden and told I needed a liver transplant in the next few months if I was going to survive. ¬†Shortly after getting a transplant by the skin of my teeth, I barely escaped with my life again as I battled a rare and extremely fatal fungal infection in my brain called “Aspergillus Fumigatus.”

Let me give you a little background information. ¬†I was living in Greenville, SC at the time when I first got this news that I needed a liver transplant to survive. ¬†There are no transplant centers in Greenville, so it was looking like I was going to have move near a transplant hospital. ¬†I guess you could say, “luckily” for me, I was already packed, because I was in the midst of packing to move to Florida for a new career. ¬†What I did not know, was that my fate would point me back up to the Northeast, to Connecticut, where my life began, and might unfortunately end, if I didn’t get a transplant, soon.

My liver was accidentally “nicked” during my liver biopsy which went undiscovered until I collapsed on the floor one night in an attempt to go to the restroom. ¬†I almost bled to death from substantial amounts of internal bleeding, followed by four episodes of cardiac arrest; things were not looking too good at all. ¬†Miraculously, my doctors were able to stabilize me without being invasive and officially get me on the transplant list. ¬†Within two days of officially getting on “The List”, I officially received the greatest miracle of all, a second chance at life!

Shortly after my transplant, I exhibited some serious cognitive dysfunction. ¬†I was in-and-out of a “coma-like” state, and other times I was only able to say “yes ma’am” repeatedly over-and-over again. ¬†I began experiencing painful and distracting visual sensations, such as: ¬†colorful lights flashing, hearing voices, and a headache so bad, I would trade it for the worst migraine you think you’ve ever had, any day. I mentally checked-out for several days to one day awake to the comment, “You had brain surgery!” ¬†Excuse me? ¬†What did you say? ¬†“You had brain surgery!” ¬†I palmed the back of my head, and sure-enough, there was a line of staples going down the middle of my scalp. ¬†There was absolutely no other thought in my head at the time except,¬†you’ve got to be effin’ kidding me? ¬†

Not even three-weeks after barely squeaking away with my life with a last-minute liver transplant, and now they’re telling me I had¬†brain surgery? ¬†What for?¬†I wondered.¬†¬†Well those headaches, flashing lights, and voices were being caused by a rare fungal-infection that had manifested in my brain somehow since first being on¬†immunosuppression in Greenville.¬†¬†

It is unfathomable to express everything going on inside my head (literally and figuratively) at this time, but I couldn’t focus on any of that. ¬†My brain surgeon at Yale, Dr. Matouk, was unable to get all of the infection out in the first shot because there was great fear of leaving me completely blind, paralyzed, or possibly killing me due to its location in my brain. ¬†This monster of a fungal-infection had a name, and it was called aspergillus fumigatus; all I knew is that the aspergillus had to get-going, or it was going to be me that would be going….and never returning.

The following week I was hooked-up to an IV of this antifungal medication called Amphotericin B for six or more hours per night. ¬†Amphotericin B is highly toxic and it’s side-effects are what I would imagine are somewhat similar to chemotherapy; god-awful. Ampho wreaks havoc both internally and externally to the point where my various medical teams had to come to a consensus as to whether my body could tolerate the medication any longer before it would cause my kidneys to fail; yet, I needed enough of the medication to zap the fungal infection in brain or that’s another (even worse) kind of trouble we’d be dealing with. A week following the Ampho treatment, my MRI showed no improvement in terminating the remainder of the infection, therefore, a second craniotomy was immediately scheduled. ¬†Brain surgery numero dos went down on June 11, 2012, but whether I would make it out of surgery alive and not paralyzed or completely blind, was something no one could answer.

Top photos: Post-transplant, pre-brain surgeries, May 2012. Bottom photos:  Post-transplant, and two craniotomies (brain surgeries).

Top photos: Post-transplant, pre-brain surgeries, May 2012.
Bottom photos: Post-transplant, and two craniotomies (brain surgeries).

When I came back to consciousness the next day, there were doctors and family standing all-around me. ¬†“What is your name?” I was asked to write. ¬†My Aunt Caryn told me that my neurosurgeon thought there was an issue with me when I wrote down “Mo” because he only knew me by Monique. ¬†He asked me to read something from across the room and write it down, so I did, without any problems. ¬†My Aunt Caryn recalls him almost falling over in disbelief and excitement that I could read. ¬†Next, my sister asked me her name and I wrote down, “Punkass” a nickname I have loved calling her since she was a teenager, (that she doesn’t appreciate as much as I do J). ¬†Hey, well at least they knew they didn’t cut out my sense of humor during surgery!

Flash forward to 20 months later, which happened to be yesterday, March 13, 2014. I am the polar-opposite of a “morning person,” but at 6:15 am yesterday I flew out of bed, hopped in the shower, and excitedly got ready to head to Yale-New Haven for my three doctor’s appointments. ¬†You’re probably thinking, wait you got excited to go to a doctor’s appointment?¬† ¬†Well when are taking this medication that consists of 12 pills/day, costs $4400/month, and makes you really sensitive to the sun and light, you would thrilled to go to your doctor if you thought he was taking you off of that medication today, wouldn’t you?

Following my Transplant Dermatology appointment and MRI of my brain. I met with Dr. Topal, my Infectious Disease doctor.¬† Dr. Topal, reviewed by MRI of my brain with me, and just as I had anticipated, I can come off of the Voriconazole (anti-fungal for my brain infection).¬† As long as the Aspergillus doesn’t come back, I will not have to take it, but the next three months they are going to watch me very carefully hoping it doesn’t come back. ¬†The thing about fungus is it usually grows very slowly, but because I’m on medication to weaken my immune system (so I don’t reject my transplanted liver), I can get ill and catch diseases that “normal” people’s immune systems can usually fend-off quite easily. ¬†The Voriconazole increased the potency of my anti-rejection drugs, so now that I am getting off the Vori, my doctors will be increasing my anti-rejection meds, which means my immune system will be weaker, and the risk of the aspergillus (if it is microscopically still present in my body at all) can try to attack my brain again.

My brain scan, 3/13/14 at Yale-New Haven Hospital.  While I anticipated much of this news, what I did not expect was my MRI scan to look like this: HOLE-y MO-y!

My brain scan, 3/13/14 at Yale-New Haven Hospital. While I anticipated being taken off the Voriconazole, what I did not expect was my MRI scan to look like this: HOLE-y MO-y! ¬†I showed my grandma and her reply was, “Now I know what is wrong with you.” ¬†She’s quite the comedian, haha.

That sounds pretty serious, but I’m not scared at all. ¬†This June will be two-years since I survived my brain surgeries to remove the aspergillus. ¬†People have brain surgeries every day across the world, but for a transplant patient to have brain surgery, twice, to remove aspergillus fumigatus, which has almost a 100% mortality rate in transplant patients, is¬†unbelievable. ¬†Not to mention, just three very short weeks after battling for my life and having a new organ transplanted into my body, there is no other word for it besides it is a miracle!

I am so blessed to be a miracle, but it is not because of what I did, it is because I have the most incredible medical team constantly looking out for my well-being, the most wonderful friends and family constantly motivating me with their love and encouragement to do great things, and finally, because I have embraced a belief system that anything in the world is possible if you set your mind to it.  My mind is set on achieving these great-big dreams of mine, like winning the Gold Medal in Golf at the Transplant Games of America and being on the Ellen DeGeneres Show to raise awareness about organ/tissue donation.  I know I am a miracle, and I am beyond thankful to have been given this gift of life, and a chance to change my life for the better and inspire others along the way.

One thing I want you know is that you don’t have to have a liver transplant or have a huge hole in your head to do great things in your life. ¬†For me, it took me as sick I became to finally listen to that voice inside my head telling me take care of myself, and not just my body, but my mind, and my soul as well. ¬†If I didn’t get sick, I probably would have never changed my ways. ¬†The matter of the fact is, getting sick and being on my death-bed was the eye-opener I needed to make the changes I needed to make in myself so that I could be the best person that I can possibly be and reach my highest potential in life.

In result of my experiences, I have been given a story, a story in which I share in hopes to invigorate your childhood dreams, inspire you to make choices that fulfil your inner passions, and to believe that you are indeed capable of doing anything in life that you so desire. ¬†My sickness wasn’t a curse; it was a blessing in disguise. ¬†It saved me from own worst enemy:¬†myself. ¬†I hope to make you guys proud as my journey continues, but most importantly I am on the path to make myself proud, a self that had been lost for years, but is finally found ūüôā

“If you don’t get lost, there’s a chance you may never be found.” ¬†~Unknown