“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.
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