Learn. Live. Hope

“Amphoterrorist” and “Baxter” the Bastard

6 hour+ IV of Amphoteracin B and Sodium Chloride a night and foot therapy for my edema ankles/legs
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 had to learn how to work my IV at-home
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 we did this so many times because the directions were so misleading
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

March 9, 2013. Healthy, happy, and hopeful!
Learn. Live. Hope

“Pain in the Aspergillus” & Homonymous Hemianopia (HH)

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 fatal infection 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-cranitomy (top) and post-craniotomy (bottom).  You can see the infection in the white, and then where they removed it.  Notice how much swelling was present before my surgeries.
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.

They put a patch on my eye to try to minimize the flashing lights and extremely painful headaches
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).
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 hemianopsia (black is where I can not see)
My visual field test which shows homonymous hemiaopia (black is where I can not see)
My visual field test of the other eye shows almost exactly the same amount of visual field
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

Learn. Live. Hope, Uncategorized

I Am Grateful; I Am Not Satisfied

Don’t worry this isn’t a dictionary lesson.

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 grateful for everything and everyone in my life, but I am not satisfied with 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

 

Uncategorized

Against All Odds

“I’ve always made a total effort, even when the odds seemed entirely against me, I never quit trying; I never felt that I didn’t have a chance to win.” ~Arnold Palmer

When I was released from the hospital (this past June 2012), the first step to getting back on my feet, was literally, getting back on my feet.  I was having a very difficult time walking without assistance. I had been bed-ridden for so long not to mention my body had just survived several traumatic surgeries.  Even though in my mind I felt like I was ready to basically jump on the saddle of life and say “giddy up,” my body wasn’t quite on-board with what I wanted to be doing.  When I wasn’t sleeping, going to one of my many doctor’s appointments, having speech, occupational, physical, visual, or psychotherapy, there was a very good chance you could find me reading and researching.

I looked up everything I could on my diagnoses, treatments and medications.  I read about pre and post-transplantation, organ donation, statistics, and truly educated myself on everything I could about basically anything I could.  To my surprise, I became somewhat intrigued by some of the things I had read, and it was a productive way to consume my time.  I liked it when my doctors were discussing results or numbers in front of me, because I somewhat had an idea of what they were talking about. That gave me a slight feeling of almost, comfort, you could say, considering it was MY body that was headlining discussion.

Obviously, many things in my situation were out of my control when I was in-the-hands of my medical team.  I was an active patient in my treatment though; I not only became more educated, but I was better prepared for what I was about to endure.  I knew it was going to be rough, but I had to preserve even when it didn’t seem like there was an ounce of energy left in me .  Rather than dwelling on all of the distress going on within my body and my surroundings, I somehow managed to put my game face on, and I haven’t seemed to turn it off.

My only hope of surviving the fungal infection in my brain, was to be on a very aggressive dual treatment of both the Amphoteracin B and 600 mg/day of Voriconazole (which I still continue to take, and probably will for another year or so).  The Ampho is a very toxic and rather intolerable form of treatment for many patients, similar to chemotherapy.  My doctors were extremely careful in monitoring my blood levels to make sure my kidney levels didn’t get too high, and also to make sure it wasn’t causing damage to other parts of my body.  This was while simultaneously managing my anti-rejection medication levels for my new, transplanted liver.  The more Ampho I was on (to kill the Aspergillus in my brain), the higher my kidney levels went.  My medication levels were like a see-saw, up-and-down, balancing anti-fungal therapy for my brain vs my kidney function.  The anti-fungal treatment needed to be aggressive if I wanted any chance of surviving, and even then, there was no guarantee.

On-top-of the anti-fungal therapy, I was experiencing many side-effects from all of the medication I was on. Certain medications I was taking were prescribed to off-set the side-effects of another medication, which also would then have a minor side-effect of itself.  I was swallowing 46 pills/day at this time; add to that lingering anesthesia from all of the surgeries, and it is safe to say my world was a decent fog.

As I mentioned, I was a rather inquisitive patient (and still am).  I was always requesting my nurses to bring me my recent lab reports so that I could analyze them.  That curiosity continued throughout my “recovery” period as I would compile lists of questions based on my findings to ask my medical team.  During rounds my doctors would come in and rattle-off a bunch of big medical terminology that initially left me dumbfounded.  I was motivated to learn what was wrong with me and learn what possibilities lie ahead for me.

I wasn’t always in a state-of-mind to do this by myself.  When I was in a state of delirium, someone in my family was always there to get the recap from the docs what was going on.  I guess even when I wasn’t “awake”, I still inherently knew that my family was right there beside me, giving their full love and support, and that, I believe, gave me an insurmountable amount of strength and courage.

According to the data and the statistics of my research findings, there is not much data to support me being alive.  For myself to be doing as fantastic as I am, to have recovered as quickly as I have, was not anything anybody expected, except myself.  I knew I didn’t want to be sick or let being “disabled” get the best of me.  My impressive medical team at Yale, combined with my the love and support I was receiving from my incredible friends and family spread-out all over the country, gave me enough confidence and strength to believe in myself to fight for my life, fight through my recovery.  I had the feeling that everything was going to turn out all-right, and not just alright, but I have a feeling it is going to turn out better than I even imagined.

A couple of weeks ago, I had an MRI of my brain and a follow-up appointment with my infectious disease doctor, Dr. Topal.  Doc called me a “miracle child.” If that isn’t enough, he went on to say there there are only a “handful” of people since the early 2000’s to be diagnosed with invasive aspergillus and survive.  He also said that they are not exactly certain as to how long I will be on the anti-fungal medication, Voriconazole, due to how extremely rare and fatal Invasive Aspergillus is.  There is lacking data to support virtually more than a handful of survivors; fortunately, my body is tolerating this medication very well, and because of that I will continue taking Voriconazole to prevent any chance of the fungus returning to my brain.

I could be scared, I probably should be scared, because I am essentially a guinea pig relying on a medication to save me from an infection that has almost a 100% mortality rate in immunosuppressed patients post-transplantation.  While I have no control of how my body handles this medication, what I do have control of is to follow my doctor’s to a T.  I stay very active and eat healthy, and after that, I just cross my fingers and look-up and say pray to the big dude in the sky to keep looking out for me; the rest is out of my hands.  Knowing I did and still do everything I can do to get well, this physical and mental combination of satisfaction is essential in me being able to put my best foot forward in battling sickness, but more importantly, it is essential to my overall well-being as a human.

Now, for the odds.  Before the Invasive Aspergillus (IA) came about, getting a successful liver transplant was my number one priority.  Without a new, transplanted liver, (and without it very quickly I might add), I was sure to die.  I tend to aim-high and set goals that one might consider to be “out-of-my-league,” and that doesn’t stop when it comes to my medical attention.  I wanted the best medical treatment I could get and I was not going to settle for anything less than the best.  This was my body, my life, my future I was talking about.

It’s not all about me though.  What really motivated me was that thought if let liver disease kill me, that doesn’t just affect me, but many people would suffer from if I passed.  My grandma cries when a Whitney Houston song comes on, what the hell is she going to do if I don’t make it?!?  I did want to be strong for me, but really I had to be strong for my family, and for my friends.  If I died and was “Angel Mo-ski” looking down from heaven in my stunna shades and saw my family a mess because of me, I know my angel heart would feel a heavy weight of disappointment.

I wasn’t about to just sulk and throw a pity party for myself. No, sir.  Instead, I was like how do I attack this?  What do I need to do? Where do I need to go?  How do I get there?  With that being said, I did my research, and Yale has an amazing reputation for many things, including being one of the top transplant facilities that you can go to, and it also happens to be not too far from about 90% of my family.

Any transplant program can claim to be the best. But when it comes to measuring how good a transplantation center is, data speaks louder than words. According to the Scientific Registry of Transplant Recipients, a national database of organ transplantation statistics (through 12/31/10):

After digging for statistics I found just about everything one could possibly find about Yale Transplant on this website here:  http://www.srtr.org/csr/current/Centers/201206/pdf/CTYNTX1LI201206NEW.pdf

I communicated back-and-forth with five different medical facilities in the area, but I had my heart set-on Yale.  I just had this feeling that everything was going to be okay if I want to Yale, and I wasn’t planning on going anywhere else.  Applying to a transplant program I found to be a similar process to the college application process.  In terms of the transplant approval process, you have to apply, correspond, and get accepted based on whether your insurance approves you.  I had narrowed my five hospitals down to two; Yale and Mt. Sinai.  I was scheduled to meet with Mt. Sinai for an evaluation, but luckily, two days before that appointment, I was able to get an evaluation appointment at Yale.

My first appointment at Yale was to see if I was an eligible candidate to be a transplant patient.  The doctor who evaluated me was Dr. Schilsky, the head of Transplantation at Yale.  Dr. Schilsky looked at my charts from Greenville, looked at me, and his exact words were this looks “worrisome.” He called for me to be admitted right-then and there. The next thing I know they were calling for a wheel-chair to wheel me to the transplant floor.  After waiting for a prolonged time for the transport to come, Dr. Schilsky wheeled me to 9West (the transplant floor) himself.  There I was with no bags packed, just me, and my wheelchair, being rolled to the transplant floor at Yale, having no idea what was going to happen next.

I knew I was ill, and I knew it wasn’t looking good,  but I never fully embraced the notion that I was ill enough to die at any moment.  I don’t know if it was the medication, and that I was very lethargic and in-and-out of consciousness constantly, but when I was awake, and when I did know what was going on, I was never really scared.  I don’t know why, I don’t know how, but I did not fear death, and honestly, I still don’t.  I didn’t allow myself to absorb anything negative; not words, not thoughts, not statistics, nothing.  I look back at photos taken in the hospital and I am smiling holding up some version of a peace sign in almost every picture.  You can see tubes coming out of my nose and mouth, my arms entirely bruised purple (from being poked by so many needles so many times each day), I’ve got staples in my skull with my head blingin’ like I just left the set of a Ke$ha video, but yet, I’m still smiling.  How is that even possible?

Most people in the same situation, I would imagine, would be freaking out.  Don’t get me wrong, I am human, and I did freak out inside a little, but in retrospect I think to myself all of the time, how did I not completely lose my cool?  I have to say, it must be because my extended family was right there with me the entire way.  I would sometimes be in dementia or unconscious for a day or two but sometimes I would wake-up and be coherent not missing a beat.  It was so strange.

It’s not like any of that was fun, but it was happening, whether I liked it or not.  And while I couldn’t control what was going on, I could control how I handled the situation.  I knew that losing my cool would get me nowhere closer to getting better, so I tried my best to keep it together.  Don’t get me wrong, had my moments where I was skeptical, but I was able to bounce back from them quickly and move on.  The key was not to dwell on what might have been negative at the moment, but rather to distract myself with positive thoughts of my friends, family, and future.  Did having a positive guarantee me of surviving?  Who can know for sure?  Deep down in my heart, I know the love that surrounded me combined with the faith I had in myself, showed a much more promising rate of survival than any stat you could (or could not) find.

I had missed calls, texts and Facebook messages that were so deeply encouraging, and utterly touching to me, I found myself laughing and crying throughout my time in the hospital.  I kept all of the messages and look back from time-to-time, just to remind me how lucky I am to have such wonderful people in my life.  I was, and I am still in complete shock, with everything.  I was like, holy smokes, I must be the luckiest person in the whole world.  It seemed like so many people cared about me, or cared about my health at least, and I feel so, so grateful to have that kind of support.

My hospital room in Greenville was unlike any other hospital room I’m sure anyone has ever seen in their life.  I had flowers and stuffed animals lining the windowsill and out-looking the parking lot of the hospital.  Every single person who came to visit me colored at least one picture out of one of the many coloring books floating around.

Hospital Room

I had visitors left and right, friends spending the night, it was like a 24-7 party going on in my hospital room with everybody and everything going on.  The nurses loved it, doctors would come in and be like is this a hospital room?  The brightness of my room, the vibe my room gave-off, combined with my friends and the laughs–it never gave me the time to let any of the negativity really set-in.  If you have no one to share good times and laughs with, then what really is the purpose of life? I was surrounded by love, and without-a-doubt that contributed greatly to me surviving, and I thank each and everyone one of my friends who came to visit me in Greenville in the hospital, you guys are so incredibly amazing, and I love you so much.

When I moved to CT and was admitted to Yale, it didn’t take long before my family got on the same trend and started coloring and hanging pictures in my room to keep the vibe going. I kept getting switched hospitals rooms from the 9th floor (transplant floor) to the 4th floor ICU depending on how sick I was.  Even though each room was slightly different in shape and size, it was always filled my family and that is what matters.  For 52 days, those hospital rooms were my “home,” and it just seemed like I was never going to get leave.

As soon as I got through one surgery, and everything seemed for a brief second like things might just be okay, somehow, something worse would happen to me.  I get through a liver transplant and think I’m done and ready to be home within 10-days, but no then I manage to inquire an extremely rare and lethal fungal infection in my brain that has almost a 100% mortality rate?  Okay, I survive the first surgery, but my surgeons were unable to remove all of the infection for fear that it would paralyze me, or leave me completely blind or deaf, and that’s only if I survived.  This meant a second, risker brain surgery was in my near future if I wanted to survive. As my family would say, “you can’t even make this shit up.

“Cerebral aspergillosis has a poor prognosis in immunocompromised patients, with the mortality rate approaching 100%.” (“Invasive Aspergillosis of the Brain:  Radiologic-Pathologic Correlation.”  Radio Graphics. http://radiographics.rsna.org/content/29/2/375.full.  June 2008.)

Everything happened so quickly and I was going through so much physically and mentally, that it is only until now, months after being discharged, that I was able to process and understand everything that I went through. It had initially taken a toll on me physically, mentally, and psychologically, but I did what I could to take on each day as a new day.

How I make the best of each day is by being physically active.  I feel myself getting stronger on a daily basis, which is motivating in itself.  I have always loved listening to music and occasionally drawing and writing silly poems, but since my transplant I have found additional comfort in writing, and discovered that it not only keeps me productive, but people seem to enjoy what I have to share.  I also have found writing to be therapeutic, so it serves a multiple purpose. I also really enjoy  baking delicious gluten-free recipes, and it excites me to change-around recipes I have found and make them my own.  I designed, created, and maintain my aunt’s website for her group, COPE (www.iwillcope.com) and potentially might be able to make some more websites here soon. (Months after writing this blog, I created another website, http://www.justsaymo.org).  The point is, even though I can’t do everything I want to do when I want to do it, I have found other more creative ways to utilize my time, and that is fine by me.

“Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.” ~Orison Swett Marden

 

Uncategorized

COPE (Community Outreach for Purpose and Empowerment)

COPE (Community Outreach for Purpose and Empowerment)

I have always had this thought in my head that I was going to do something great one day, but never knew what.  I am constantly asking myself questions all of the time in regards to what I really want to do, but have never found any concrete answers, and it has been chipping away at me each and every day for years.  I know what I like, but what do I love?  What is my passion?  What am I destined to do?  Is this something I will be proud of ten years down the road?  I’m 27, and I still don’t really have everything figured out; all I do know is that I don’t want to spend my life feeling “stuck” doing something that I find meaningless.  I want to be able to look back on my life and be satisfied with who I am and what I have done.

Through self-interrogation, I’ve found that what makes me feel good is when I make other people feel good, especially about themselves, and that I want to make a difference in people’s lives; whether it is one person or potentially millions.  I want to take my experiences, my mistakes, my regrets, my victories, everything, and be able to share what I have learned with people who are maybe in the same place I recently was.  I want to show them that no matter how down or horrible life may seem at times, it is basically just testing you to “see whatcha got”.  When you are confronted with a difficult situation or any obstruction, you have the choice to let it block your path and stop you from where you are going, or you have the choice to find a way around it and keep moving forward.  I personally choose to knock my road-block down, right on it’s ass, screw the detour, and now I am traveling (slightly over the speed limit) cruising headed straight for “Achievement Avenue.”  If you are headed in my direction I mostly certainly have room for you, but if you are headed south toward “Sink Town,” you might want to consider a boat to keep you afloat to get you to where you are going.  Metaphors aside, most importantly, I am on the path in which I am proud of who I am and what I am doing.

So, I got “the feeling” that I can feel it in my gut, when something good or bad is going to happen.  I am sometimes not very good at articulating these gut feelings into words that others will always understand.  My gut has an innate ability to sense the good and the bad in the near future, and over-time I’ve learned that I need to just go with what my gut is trying to tell me.  It is a tingling in my stomach, a subtle feeling of nauseousness, but I am able to differentiate it from being sick.  Well, I got the feeling a few days ago, and today I have had it all day long, which somehow turned into me dancing and singing like a crazy fool around the house in my headphones singing Carly Rae Jepsen songs.

“Rise above the storm and you will find the sunshine” (Mario Fernandez).  It couldn’t be more true for me right now.  Last year, I basically experienced a living-hell.  If you know me at all or have kept up with me via Facebook or my blogs you may know a little bit, or maybe even a lot about of what I’ve endured.  The storm (more like a category 5 hurricane), came and went, the fog followed shortly after, and now I can finally see the sun peaking through the clouds.

As I mentioned earlier, I have always had in my mind that big things were eventually going to come my way, but I just didn’t really know what I wanted or where I wanted to direct my energy towards.  My aunt has also always had a big vision of what her future would hold, which would include helping people in some way, but she wasn’t exactly sure how either.  In the past couple of years she has been brainstorming several ideas, but it is not until I got ill, that Caryn and I realized that our own strengths and weaknesses complement each other, and we make a great team together.

With that being said, we have formed a community outreach group called COPE (Community Outreach for Purpose and Empowerment) which we have just recently launched this week.  I have been working hard to put together the website, Facebook, Twitter, yada yada and it is up and running.  Caryn has been really excited for COPE, and her energy feeds right into mine, and then I start to get excited.  It’s hard to say exactly where we are going from here, but what I am certain of is that the combination of Caryn and myself with our driven, resilient minds, and huge dreams collaborating together, there is not a doubt in my mind that we are going to change people’s lives.

As horrific and terrifying this past spring/summer was for me, I could not be more thankful for everything that has resulted from it, because it has gotten me to this place that I am at now.  Besides bringing me back home closer to my awesome, one-of-a-kind, loving family, my frame-of-mind is like it has never been before.  I think it is a mind-set that I do not see many others experiencing for themselves.  I am not convinced that many people out there dream like I dream.  Even if they do dream big like me, the difference between my dreams and their dreams is that I actually believe that my dreams are going to come true.  My aunt is the same way.  That is why we make a great team together, and that is why COPE is going to be awesome; because we will not let the opportunity arise for it to fail.

This past year has been a test for me.  I had many chances to give-up and throw the towel in.  It was a test of my inner strength, a test of my character, and a test of who I am.  Each illness or set-back I acquired was an obstacle.  I had to be patient and overcome all of the “obstacles” thrown at me.  It was, and still is difficult sometimes, to have your entire life changed.  It has required great patience, and ask anyone in my family, “patience” isn’t exactly my greatest attribute.  Somehow, I was victorious over impatience and even though I was deathly ill, I have been successful in overcoming every obstacle in my way thus far.  I did not just overcome the obstacles, but in some ways, I came out even better than before I was sick.

I have learned so much in the last few months about life, about myself, and what is truly significant. I’m sure it is difficult to relate to me unless you have walked in my shoes, because I don’t even know that “me” a year ago could even relate to myself now, simply because I, myself, had never experienced anything of this magnitude or of this great importance before.  I mean what is of greater importance than your own life?  It took me practically dying on more than one occasion for me to come to the realization, that this is my life, this is my body.  Any change I wish to see in myself, and any goals I want to pursue, has to start with me, and nobody else.  I understand that what I went through is not exactly easy for everyone to relate to because they haven’t been in the same near-death situation, but what I can offer is a deeper appreciation for what is meaningful in life.  No matter who you are, or what you do, something is of meaning to you, and I learned that no matter what you previously thought was of great meaning to you, nothing outweighs your family, friends, and most importantly yourself.

What I am here to say today is that everything that happened to me, happened for a reason.  Of course, my life would be so much easier and less expensive if I did not need a liver transplant or two major brain surgeries, but it has made me who I am and the person I was supposed to become.  I will embrace what I have learned and who I have become and live this new, totally different life-style with great meaning that I hope to share and inspire others within our newly-formed group, COPE, and in my day-to-day life as well.

You can check out our website and other contact info at:

http://www.iwillcope.com

http://www.facebook.com/iwillcope

Twitter: iwillcope4me

Learn. Live. Hope, Musical MOtivation, Uncategorized

Livin’ on a Prayer

In the hospital after my second brain surgery in (June 2012) vs. (January 2013) living it up--visiting familyat the beach in St. Augustine, FL
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.”

Learn. Live. Hope, Uncategorized

New Year, New Health, New Beginning.

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).

Learn. Live. Hope

The End is Far from Near-I’ll Be Running When the Sand Runs Out

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”

~When the Sand Runs Out, Rascal Flatts
Learn. Live. Hope, Musical MOtivation, Uncategorized

Give Me Love (Give Me Peace On Earth)

“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

Learn. Live. Hope, Musical MOtivation, Physical MOtivation

MO in the Mirror

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 matching transplant in very late April 2012 just a few days before my transplant
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 transplant
Looking and feeling a million times better ready to celebrate the holidays with my family early December 2012
Looking 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
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 🙂

Musical MOtivation, Uncategorized

Live Like We’re Dying

“You never know a good thing ’til it’s gone You never see a crash ’til it’s head on Why do we think we’re right when we’re dead wrong?  You never know a good thing ’til it’s gone…”
“Yeah, we gotta start looking at the hands of the time we’ve been given If this is all we got, then we gotta start thinking If every second counts on a clock that’s ticking Gotta live like we’re dying….”

Very true.  Appreciate what you have and don’t take the little things for granted.  Sometimes you don’t realize what you have until it’s gone, and then it is too late….

Musical MOtivation, Uncategorized

Fly/I Believe I Can Fly

This is a mash-up of R.Kelly’s “I Believe I Can Fly” and Nicki Minaj’s “Fly” (sung by the cast of Glee)

This song inspires me and when I listen to it and I feel like one day that will be me, and I am going to “fly”  “…Then I can do it if I just believe it, then there’s nothing to it….”

“Cry my eyes out for days upon days, such a heavy burden placed upon me, but when you go hard your nay’s become yay’s…..I came to win, to fight, to conquer, to thrive, I came to win, to survive, to prosper, to rise. I believe I can fly, I believe I can touch the sky….”

Physical MOtivation

MOving the Weight

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!
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.

May 29, 2012 vs Dec 5, 2012
May 29, 2012 vs Dec 5, 2012

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.

Weigh-in 12/13/12
Weigh-in 12/13/12
Musical MOtivation

“Roll If Ya Fall”

I know Christmas is right around the corner and you have probably been decking the halls while jamming to some “Jingle Bell Rock,” but in case you wanted to give your ears a short break from “Santa Baby” you can with a song I love called, “Roll if Ya Fall” by Barefoot Truth.  I love me some Christmas music, but most of us can probably agree that Christmas songs can get old pretty quickly, especially after you’ve heard, “Frosty the Snowman” for the third time in the past hour.  I like to change my music up all of the time, and sometimes a good song is exactly the thing you need to motivate you to get going in whatever it is you have to get done.

“Roll if Ya Fall” just sparks something inside me to just feel happy.  When the song first begins, it always seems to put me in a day-dream where I am sitting on a beach somewhere with friends relaxing, sipping on a nice cold beverage, living the life.  The first time I heard the song, during the instrumental intro, I found myself bopping my head around and tapping my shoes to the beat of the bongos heard in the song. So I’m feeling it, I keep listening, I hear the lyrics and I realized that the song actually has some depth and meaning behind it.  Hold-up…this song has a chillaxin’ DMB essence to it, and it’s lyrics are somewhat motivational?!?  That is right up my alley, and that’s what I call a Mo-tastic song!

As I listen, the song describes life as a “game”, and the little things we do in our daily lives contribute to our final “score.”

“And when we add the score at the end of this life, I wanna say I won the game.”

Being the competitive person that I am, this really has my attention now. Whether you are competitive in nature or not, if life is considered a game, that is one game that I an sure you do not want to lose.

Eventually, one day my time will be up, all of ours will; but mine will not be right now. I have already proved on more than one occasion, that if you are going to try to take me down, I will go down swinging with both arms swinging.  If you knock me down, I will get back up.  You can even knock me down a few more times after that, and no matter what, I will get back up, and I find a similar sense of action is found in the lyrics of this song.

Another reason I love this song is because it asserts being tough, without the intensity, but rather in such a cool, and relaxing way.  “It’s a simple inspiration, it always gets me high…,” I always find inspiration in song lyrics and try to apply those lyrics to my life because a simple lyric can become a simple inspiration for me.  When I’m inspired, and it doesn’t take much, there is no doubt I’m going to “roll” if I fall.  Even though this past April and May I fell, and I fell about as hard as you can go down, I got up, and got “rollin.” I plan on continuing “rollin” even “if flat shadows get me down, I’ma roll if I fall.”  I advise you to not stand in my way, because more than likely you will get your ass run over!

Learn. Live. Hope, Uncategorized

“MOnday”

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 : )

It is not work that kills men; it is worry.” –Henry Ward Beecher

Mo Gesualdi 11/26/12