“Right Homonymous Hemianopia and Seizures in Transplant Patient”

All of my medical friends will probably find this article interesting–

If you didn’t know already, I’m one of less than a handful of known survivors world-wide to overcome Invasive Aspergillus while on transplant immunosuppression medication.  Due to the severe shortage of patients to survive this infection, my transplant doctor and and my transplant surgeon, Dr. Schilsky and Dr. Manuel Rodriguez Davalos​​, wrote an article that was recently published in the American Journal of Transplantation to assist other doctors and medical staff better understand the complications, risk factors, and symptoms of transplant patients.  This article will hopefully facilitate transplant doctors to recognize abnormal symptoms of post-transplant patients so they can make a timely and educated diagnostic evaluation and possibly save more patient’s lives affected by Invasive Aspergillus.  Thank you to Dr. Rodriguez, Dr. Schilsky, and the medical staff at Yale-New Haven hospital for everything they have done to save my life 🙂

http://onlinelibrary.wiley.com/doi/10.1111/ajt.12870/full

#AmericanJournalofTransplantation #Transplant #Liver #Hemianopsia #Aspergillus #Yale #YNHH #OrganTransplant #LiverTransplant

IMG_6275-0.PNG

IMG_7761.JPG

IMG_7770.JPG

“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