Learn. Live. Hope

HOLE-y MO-y

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Learn. Live. Hope

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.