Link

“Danbury’s Monique Gesualdi Meets PGA Pro Golfer & Fellow Transplant Recipient Erik Compton”

Dearest family, friends, and supporters,
Here is the full four-minute story that aired on the 7 o’clock news on WFSB Channel 3 this evening. Thank you to John Holt for putting together an amazing story! I also want to say thank you to all of my family, friends, and supporters who have been there for me through every up-and-down over the years, as well as a very special thank you to my anonymous organ donor who has given me a second go at life. This new life has given a whole new appreciation for what life really is about and reinvigorated my drive to live a life of purpose and ultimate meaning. I had long been searching for a “passion” that would bring a sense of fulfillment to my life, and it wasn’t until my organ donation until I truly knew what I was supposed to be doing with my life. Now I am certain that no matter what I am doing, where I am doing it, or who I am with, that I will be raising awareness about the life-saving benefits about organ/tissue donation with a piece of my donor guiding me every step of the way. Thank you all again, and I hope you enjoy the video! 

P.S. Maybe we get this hands of The Ellen DeGeneres Show so I can accomplish my next mission of spreading awareness about organ/tissue donation on her show!  Thank you for all of your help and support in helping me reach this goal that I am determined to accomplish!

20140621-004451-2691659.jpg

How Am I Still Alive?

With respect to cerebral aspergillosis, there is a clear difference in outcome between immunocompromised and nonimmunocompromised patients, as shown in table 1. Among the 141 immunocompromised patients with cerebral aspergillosis, 140 died, a mortality rate of 99%. In contrast, only two of the 15 nonimmunocompromised patients died, a mortality rate of 13%.”  (Denning, David W., “Therapeutic Outcome in Invasive Aspergillosis”, Oxford Journals. 23 September 1996. Pg 10.)  

MRi pre-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-cranitomies (top) and post-craniotomies (bottom). The white identifies the infection, invasive aspergillus.

I often find myself researching online about a variety of things.  Sometimes it is current events, or sports, other times I will check out what Justin Timberlake is tweeting or get caught in reading some trashy article about a Kardashian, but often times I get absorbed into reading about various things concerning my medical adventure this past year.

This past weekend while doing some periodic researching, I found a couple of very interesting statistics in regards to my medical diagnosis.  If you know me at all, or have followed my blogging, you already know I survived a miraculous liver transplant one year ago this past May (of 2012).

After I successfully became a recipient of a new liver, you may also be aware that I had two major brain surgeries shortly after, and was once again a survivor.  I defied every odd and belief presented to me and still to this day I am referred to as the “miracle child” by my doctors because honestly, there is no medical reason I should be alive today.  My body which had no absolutely no time whatsoever to heal from the trauma of having a liver transplant just a couple of weeks beforehand to then be a victim to an immensely fatal and unheard of cerebral fungal infection is nothing short of amazing.  You know I had the brain surgeries but do you know what for? Or why?  Probably not, so I thought I would try to explain in using the least amount of “big doctor’s words” as possible.

When you have a transplant of any kind, your life has changed forever, including all of the little things that you commonly overlook such as where and what you eat/drink, your daily routine and habits that you just perform without thinking about.  One new aspect of my daily routine that I had to incorporate after transplant was taking my immunosuppressant medications on-time, three-times a day.  Yes, I have a weekly pill box and have my phone set on a timer so I can swallow my 20+ pills on-time each day (hey, that is down from 46 a year ago!)  Nine of these pills I will have to take each and every day for the rest of my life.  Six of the nine are called identified as “anti-rejection” drugs.  What is an anti-rejection you might ask?

When you have a transplant of any kind, your body recognizes the new organ in your body as “foreign” and it’s natural response is to reject it just like it would any other foreign object in your body.  In order to “accept” the new organ and not “reject” it you must take the anti-rejection medication prescribed by your doctor every single morning and evening on a 12-hour cycle.  Once you have your transplant, you see your transplant doctor quite regularly, which mine is at Yale-New Haven, located about an hour away from me.   You are scheduled for blood work and check-up appointments with your transplant team every week after your transplant for the first month so your doctor can closely monitor the level of anti-rejection medication in your blood.  Too much of your anti-rejection in your blood can result in toxicity and too little can result in possible organ rejection.  After the first month, you are reduced from getting blood work done to every two weeks, then to every three-weeks, then to every month, two-months, three-months, etc.  A week from this Thursday I have an appointment at Yale to get blood-work and have my liver check-up in which this will be my “one-year” post-transplant check-up!  After this appointment I will be “promoted” to only having to see my transplant doc every two-months.  YAY!!

As I mentioned, after my transplant, I will be on anti-rejections for the rest of my life.  Anti-rejections are classified as immunosuppressants.  What is an immunosuppressant?  An immunosuppressant is a substance that performs immunosuppression of (weakens) the immune system.  Why would I need my immune system weakened?  To not “reject” my liver.  What does weakening my immune system do?  A weakened immune system is more susceptible to infections or diseases that target the immune system.

Once I received my transplant, I was, and currently am on anti-rejections like all transplant patients are.  My body was already extremely weak from just surviving a liver transplant, not to mention all of the medical complications including losing my pulse four times and being revived.  My body, nor did I, have any idea that I was going to have to endure two crucial brain surgeries, that would once again perform some serious stress on my body without any time for recovery.  Everything happened so unexpectedly where there was no time to sit down and realize how incredibly quickly everything was happening.  It’s really not that far-fetched to to say my body was trying to recover from being run over by a truck, and personally I wouldn’t hesitate to say it felt like the truck ran over my slowly, backed it up, and ran over it a good two times more.

Staples in my head after my first brain surgery.  That wasn't so bad, with a little glitter I might look like I fit in for a Ke$ha music video.  Bling, bling.

Staples in my head after my first brain surgery. That wasn’t so bad, with a little glitter I might look like I fit in for a Ke$ha music video. Bling, bling.

So why did I have two brain surgeries after my transplant?  As I mentioned after my transplant I was very weak and also immunosuppressed.  Also, to be noted, I was in the hospital for an extended period of time, exposed and vulnerable to all of the sickness and illness floating around in the air waiting to be caught.  By being so weak, immunosuppressed, and surrounded by sickness, meant I wasn’t in the best position to defend myself from any illness that came within close proximity to me.

For my second brain surgery they shaved down the middle of my head and sewed back with stitches.   This look, which I called the "Reverse MO-hawk" was a lot more noticeable than my staples.

For my second brain surgery they shaved the hair down the middle of my head and my head and stitches were used instead of staples. This look, which I called the “Reverse MO-hawk” was a lot more noticeable than my staples.

With that being said, aspergillosis, is the most common fungus present floating everywhere in the world, through the air in the form of dust and present in mold.  Typically, when it is inhaled it is not a threat and is destroyed by our immune system.  You can probably see where I am going here.  After my transplant my body was so weak, it could not destroy the aspergillosis as it got into my respitory system, then into my bloodstream, then up to my brain.  Convenient right?

So after my transplant I was experiencing the most wicked headaches that I can even begin to describe, seeing flashing lights, and hearing voices which don’t exactly compliment my pounding, non-stop headache.  Obviously, something isn’t right, so the next step was to get an MRI of my head to see if anything could be found.  After a couple of unsuccessful attempts to get an MRI because of my resistance from the extreme pain and inability to sit still, finally it was discovered that aspergillosis has invaded my brain in the left occipital lobe.

No one really can easily say or spell invasive cerebral aspergilosis, so it is just much easier to refer to is an an abscess or infection in my brain.  At this point docs have realized I have a very rare, and highly fatal fungal infection in my brain while my health is fading at a very rapid rate.  Me, myself, and I have essentially  “left the building” if you know what I mean.

So just shortly after receiving a liver transplant in which happened so unexpectedly yet in impeccable timing, I am now diagnosed with this shocking and terrifying diagnosis that no one has ever heard of.  Luckily for me, as I mentioned, I had left the building mentally, but my poor family had just been through a very tough week emotionally after losing my pulse several times, barely getting a transplant before I kicked the bucket, and now they are being told I have this notably rare, and drastically lethal infection in my brain where the only option is to be invasive, and even then there isn’t too much medical hope for survival?!?  I mean come on, what is going on here, an episode of Grey’s Anatomy?  Unbelievable.

Even though I was out of it, and hardly “awake” my body must have known to turn-on “kick-ass mode”.  All I remember is that I had gone to sleep with a headache one night, and two-days later when I woke up the date on dry-erase board was several days later than from when I last fell asleep.  I also had tubes in my mouth which I didn’t have in when I last remembered going to bed.  “Mo, you had a brain surgery.”  What?  I have no idea what you are talking about.  I feel my head and there is still hair.  I feel around and there are these little metal things all down the middle of my head.  Holy shit, what is this bling in my head? Staples.  Holy shit, I really did have brain surgery.

Encouragement, love, support, prayers, and positive attitude is what got me through.

Encouragement, love, support, prayers, and positive attitude is what got me through.

It was explained to me, but it never really sunk in.  I didn’t have much time for it to sink in because even though they had performed one brain surgery, a bit of the infection still remained.  My neuro-surgeons had removed a good portion of the infection, but due to it’s location, there was a very serious risk that the second surgery could result in my inability to see, speak, or potentially be paralyzed, and that is only if I made it out of surgery alive.  I was immediately put on a very aggressive treatment of hardcore anti-fungal agents.

My neuro-surgeon was very hesitant to operate a second time, but since the follow-up MRI showed no improvement, he would have no choice but to put the knife to my head for a second time.  If I did make it out alive, the chances of blindness, speech loss, and paralysis were even greater than they were for the first brain surgery.  The risks of this brain surgery was even greater than any of the other surgeries beforehand since it was going to be the third major surgery within a matter of five weeks.  The next option, and only option at this point, was to perform a second brain surgery.

I was “aware” when I went into my second brain surgery, and I was “aware” when I finally awoke a day after the surgery.  When I awoke, I was incubated and my neurosurgeon, Dr. Matouk, asked me my name.  I wrote down “Mo” and Dr. Matouk was like, “No, that’s not right.” and my sister was like, “Yes, that’s right, that is her nickname that she goes by.”   So then he asked me to read something from a far and write it down, so I did.  He was in utter amazement.  Within two-days after surgery, I was able to take a few steps and walk, slowly but surely hobbling along like a stiff piece of wood.  Then I started progressing my physical activity a little bit each day and was doing “laps” around the ninth floor of the transplant wing.  No one could believe it.  I was ready to do more, walk more, but everyone was pretty much like, “let’s take it easy, you’ve been through a lot”.

“Take it easy”, has never really been a part of my vocabulary to be quite honest.  By not taking it easy, and continually pushing myself physically and mentally each and every single day is one of the reasons why I have healed like I have.  It would have been easy to feel and say, “poor me” “why did this happen to me?” But I didn’t.  Instead, I saw where I was, I didn’t like what I saw or how I felt, and I said to myself, if you want to “look normal” again and not look like a lifeless patient who has been hit by a 16-wheeler, then you are going to have to work hard at getting better.  Really hard.

I would think to myself, “Right now, physically, there is not much you can do, but be patient, and keep thinking you can do things  Try a little bit further each day than you did the day before, and that is all you can do.  If you can do that, while staying positive and not let the best of your frustrations get to you, you will be rewarded for your efforts one day.”  So that is what I did, and this is where I am.  I had a lot of people praying for me and my health, so many cards and letters and words of praise and encouragement.  I was constantly motivating myself to get better so I could one day hopefully “be normal” again rather than be sick on the verge of demise.  So far I am pretty pleased with how I basically stared death in the face and said, “Get the hell outta my way!”  Seriously, I’ve got things to do, and people to meet, like Justin Timberlake : )

In the hospital post second brain surgery, June 2012 vs. May 3, 2013.  I don't even believe it sometimes.

In the hospital post second brain surgery, June 2012 vs. May 3, 2013. I don’t even believe it sometimes.

“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!