As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013. For more info on our club, please go tohttp://www.westconntoastmasters.org.
“The greatest wealth is health.” ~Virgil, Ancient Roman Poet
Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.
As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU. I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis. While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.
The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude. When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to. Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body. One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.” Aunt Caryn started laughing. I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!” While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!” At this time we both started laughing uncontrollably! While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were. Instead of dwelling on all of the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.
The second lesson I learned while being sick in the ICU, is that life really is about the “little things.” I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you. When I was in the ICU, there were many things I couldn’t do on my own. I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all. When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months. This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving. I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie. I was restricted from common, day-to-day things that we don’t even think twice about; we just do them. My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them. I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.
The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life. Being sick is a burden. There’s no way to say it besides it “sucks”. It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to. While I was sick in the ICU, I learned that some people just couldn’t be bothered. Those same people who couldn’t be bothered, are sometimes the people you needed the most. My sickness brought out the best in some people, and it also brought out the absolute worst in others. I’m only going to talk about the best though. One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut. One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country. I learned family is something you should never take for granted. When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family. Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!
After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude. I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced. I will leave you with this:
“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult
“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-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.
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 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.
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.
Just Say Mo Foundation 