monique – Just Say Mo Foundation

HOLE-y MO-y

March 14, 2014May 28, 2014 Mo Gesualdi

“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 🙂

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

Uncategorized

2013 Liver Life Walk Champion (Fairfield County)

June 14, 2013June 14, 2013 Mo Gesualdi

2013 Liver Life Walk Champion (Fairfield County)

Dear MOtivators aka friends and family,

I have been asked to be the 2013 Liver Life Champion (Fairfield County) this year! The Liver Life Walk will be held on September 29th, in Stamford, CT and I will be speaking at it this year!

I am so honored to have this opportunity to represent the American Liver Foundation and to publicly speak about my journey. Thank you for all who have followed me and supported me, I wouldn’t have the courage to be doing this without your continued support!

If you would like to read my story posted on the American Liver Foundation website, I have posted the link here: http://go.liverfoundation.org/site/TR/Walk/General?pg=informational&fr_id=3461&type=fr_informational&sid=2451

If you are in the area I would love for you to attend the event on September 29th, 2013 at 100 Washington Blvd, Stamford, CT 06902. I have designed Just Say Mo T-shirts for the event and I will be letting you know soon about purchasing those.

If you can’t make it to the event you can still donate to my fundraising page found here: http://go.liverfoundation.org/site/TR/LiverLifeWalk2013/LiverLifeWalk?px=1784751&pg=personal&fr_id=3461

Thank you so much for supporting me on my journey, and thank you for all of your help spreading the word and donating to Team Just Say Mo!

Much love,

JUST SAY MO-last year at the 2012 Liver Liver Walk held in Stamford, CT

Physical MOtivation

MOving the Weight

December 6, 2012March 3, 2014 Mo Gesualdi

This past March (2012) I was experiencing what the doctors call, “acute liver failure,” which essential means that my liver was losing its ability to function; at a very rapid rate I might add. Your liver has a variety of vital functions including processing just about everything that enters your body. It then regulates it, metabolizes it, stores vitamins/minerals, assists with digestion, removes waste, rids the blood of toxins, and I’m sure many more things that I don’t know a thing about. I am no doc, but every function listed above sounds like it plays a pretty legitimate role in how our bodies function. At this time, basically all I knew is that my liver was ready to say, “see you later jack ass!”–I just didn’t know when or how soon that was going to be.

In late February/early March, the first symptom that I identified was jaundice. I usually have a decent tan going on, but when I started getting more “tan” without going into the sun, and the whites of my eyes were the color of a lemon peel, I knew something wasn’t quite right.

I had other symptoms, but I disregarded them, mostly because I have come to find I am quite stubborn, in a way much like both of my grandfathers; getting me to go to the doctor for ANYTHING was a task in itself.

So, I Google searched “yellow eyes” and what I my results yielded was that I was “jaundiced.” I was thinking, well what the hell is jaundice? I looked that up it is pointing toward something being wrong with my liver.

In a normal functioning body, your liver breaks down billirubin (left-over old red blood cells, yellow in color) and removes it through your waste, (which I like to refer to as “poopski”), but since my liver was failing, it was unable to break down and remove the billirubin. The billirubin was building up in my bloodstream, along with toxins that my body was no longer removing on it’s own, and that is how I became jaundiced. No bueno.

Along with being jaundiced, I began starting to experience edema, which is swelling caused by fluid trapped in your body. My feet and legs became so filled with fluid that you could press down on my foot and it would leave a big indention with your finger, and a few seconds later it would resume its position of being a big, fat, jelly foot. Simply put, it was gross. Not only were my edema-induced legs and feet absolutely disgusting to look at, but they were quite painful to walk on. I had to constantly lay down and prop my feet above my head in attempts that maybe gravity would displace some of the water and reduce some of the swelling. That worked for about all of two-seconds before my feet would swell-up and be in awful pain once again. My docs put me on a low-sodium diet to reduce retaining any additional water, which would just make the swelling even worse.

Four years prior to this time, I had been diagnosed with Celiac Disease. Celiac Disease? I was like, “what the hell is that?” My GI doc in Greenville failed to fully educate me on what the hell that was, plus not only is eating gluten-free a pain-in-the-ass when you are always on-the-go, but it is expensive, and it usually tastes like cardboard (GF has come a long way since them in terms of awareness, taste, and options). After about two months of being gluten-free, I said the hell with it, I don’t have any symptoms, that doc must be nuts, I’m not spending extra money on all of the crap that tastes horrible, AND it doesn’t make my stomach feel sick, so the hell with it!

The hell with it alright. Four years later the Celiac monster re-surfaced during testing and so the docs added gluten-free restriction to my low-sodium diet. At this point, I can’t get these fluid-filled stumps that I’m supposed to call feet into my shoes, they hurt, and I am on a low-sodium, gluten-free diet, somehow only managing to looking more and more like a balloon with arms growing exponentially by the day. The edema was painfully obnoxious at the time, but the worst had yet to come.

If my body wasn’t completely swollen and disturbing to look at enough, it began building up large amounts of fluid in my abdomen called ascites. It was starting to fill-up quicker than my skin could stretch, developing almost instantaneous stretch marks. My stomach got huge and when I say huge I really mean gigantic! Dear Mo’s body, can you get any more swollen, I mean seriously? If I bumped into a sharp corner, there was a good chance there would be a “Clean-Up, Room 302!” I’m just kidding, I wouldn’t actually pop like a balloon, but you get the point. If you can imagine, I was beginning to get very frustrated because it seemed like no matter what I did to try to keep the swelling down; it just just kept getting worse.

I have looked back at pictures and I looked like a bowling ball with two fat stumps sticking out! Not to be a negative Nancy, but throw on a high dosage of prednisone to my unbearably fat feet, legs, and stomach, and now I have no option but to add a “chipmunk” face covered in pimples and cysts to that laundry list of already highly frustrating side-effects that prednisone offered. Sooner than I expected, I would have something really worth complaining about.

Edema/Ascites/Stretch Marks due to failing liver — Edema and ascites due to failing liver caused severe swelling and the beginning of stretch marks that quickly worsened as my condition worsened

Fast-forward about a month down the road to Yale in the ICU, and I’m on the verge of dying. A swarm of my medical team were literally pumping me with bags upon bags full of sodium chloride to try to keep me alive, flushing out the toxins building up in my body. My failing liver is unable to properly dispose of these toxins, so where were they going if my body wasn’t eliminating them? Up to my brain, which led to on-and-off bursts of dementia.

Things were not looking good, and I just kept getting heavier and heavier with fluid. I believe the heaviest that they have me recorded weighing-in was a weight of over 220 lbs, which is about 50 lbs over my prior weight. Now, I have never been super-model thin to start off with, but that is an abundant amount of extra weight to be carrying around all-of-a-sudden, no matter who you are!

While I was in the hospital, they checked my weight frequently because it would change so dramatically from day-to-day. My weight each day depended on how much I urinated the night before. At around 4 a.m. every night, the evening PCA would come in and take my weight. After transplant, no joke, I would lose seven-nine pounds in one night…ONE NIGHT! (I’m assuming that is because my new liver was working properly, that my body was then able to dispose of the excess liquid properly? I am no doctor, so that is just my assumption based on what I have read.) Either way, I was losing the weight, and I was losing it fast; too fast! On June 1, I weighed in at 161.4 lbs, about 60 lbs lighter in less than a month.

Chipmunk face and all, still happy to be alive and kicking!

While it definitely was nice to not be carrying around so much extra weight, it was happening way too fast. I acquired stretch marks all up-and-down my upper thighs to my calves, my stomach, my feet, and even under my boobs. Thank you to some Mederma and other creams, those stretch marks have subsided greatly. I continue to lather myself in cocoa butter creams daily in hopes to rid the marks even more, but my stomach area definitely is taking the longest to reduce the marks.

When I was released from the hospital on June 14, 2012 I weighed approximately 155 lbs. I have been off prednisone now for about a month and today (12/5) I weighed-in at 128.8-lbs. Of course each scale varies a lb or two or three here and there, but I have lost roughly 90-lbs since my heaviest weight at Yale, about 50-lbs from my pre-transplant weight, and about 25-lbs since June (6-months). I never really broke it down like that, but that is a lot of weight when you really think about it! I am very proud of my progress and that gives me the MO-tivation I need to further keep pushing myself to get stronger until I am fully recovered. I am actually aiming to put-on some weight, in the form of muscle, but I have been having a tough time doing so because my legs have not been fully cooperative in my efforts to do so. In one of my next blogs I will attempt to address the struggle I have had with my MO-bility on my road to recovery.