Tuesday, July 31, 2012

6 Month Checkup

I usually know I'm due for my routine doctor's checkup when I start to have random panic attacks. They usually start with a slight tingle in the center of my palms. What comes next can only be described as LITERALLY FEELING LIKE I AM DYING!!!!! My heart starts to beat rapidly, thumping hard in my chest. My breathing begins to intensify, and I start to feel as if all the oxygen in the room is rapidly escaping somehow. My eyes shift in all directions as I scan the room in panic for a way to "make it stop!" Intense fear overcomes my entire body as I think to myself "is this it?!" The shear fact that I have asked myself this question countless times in my 29 years of existence is precisely why I appreciate my life so much! A constant reminder that not a day in this life is guaranteed. Since my illness began at such a young age and has gotten progressively worse over time, I live with the constant fear of getting hospitalized because something may be wrong. Although I don't consider myself to be a hypochondriac, I somehow convince myself I may be having a heart attack an average of three times a week. Fortunately I have perfected my skill of politely excusing myself to the restroom so I may stare into the mirror, taking deep breaths, and perhaps splash cold water over my face. Once I regain composure I am able to return to the general crowd as if nothing ever happened. The ones closest to me always seem to know as we exchange a reassuring glance, a way of communicating without words. All it takes is a quick wink from my sister-in-law to makes me feel so safe in an instant. I was particularly nervous last Thursday morning as my mother and I did the usual trek across the GWB (George Washington Bridge). I knew we had a long day of testing ahead of us as I suddenly realized it had been almost 6 months since my last visit. Standard procedure would include, EKG, Xray, Echo, Bloodwork, and Allomap (special new bloodtest used to detect early organ rejection). On average, transplant patients as far out as I am (time since surgery) need regular checkups/heart biopsies every 4 months give or take depending on the patient. During these heart biopsies, a small incision is made in the major artery of my neck and a tiny clip wire is strung down the artery straight through to my heart and tiny pieces are snipped and tested for rejection cells. I had this procedure performed twice a week, Mondays and Fridays, in the weeks directly following my heart transplants. And yes...I am awake the entire time! My stomach was twisted in knots as we turned into the circular drop off zone of New York Presbyterian, but loosened a bit with a friendly "Good Morning" from the sweet valet attendant. Im not sure I know anybody that enjoys going to the hospital and so this slight gesture of warmth and kindness certainly makes all the difference in the world. When you've been to the hospital as much as I have, everyone from the cleaning lady to the heart surgeon is like a piece of your "family".  Security guards confirm my identity by checking my license, however this is simply a formality as we have known them for over 8 years now. Stepping into the elevator I was greeted with another friendly familiar face, Dr. Linda Adonizio. Surely if God had a presence on earth it would be that woman! Among countless others, she has been an incredible physician and instrument of support who brought a glimmer of light into my life as darkness tried to overtake my existence. It was only a matter of seconds before she whisked off onto the 2nd floor to start a surely busy day but it was just enough time for me to be reassured that the day was going to be GREAT. 4th Floor, 1st room on the left was our stop.  The transplant secretary, Laura is always welcoming and does her best to make my day as quick and easy as possible. I love her for that! I was handed a med sheet and placed in an exam room. Being the busy woman that she is, mom takes this time to make a few important calls as we wait patiently for the doctor. The physician's assistant walks in and takes my height, weight, blood pressure, and confirms my medication list. Even after all these years my list of meds still amazes me. This is probably because medication compliance is my number one priority in staying alive! Taking meds late or missing doses entirely can cause immediate and severe stages of organ rejection. For those interested, I plan to reveal how I painfully had to learn that lesson the hard way in my upcoming autobiography. I sat back down on the exam table disappointed as I realized I was down in weight since my last visit. Sometimes deep down you know you have to change patterns in your life and it definitely sucks when you have to finally face that reality. I get really hard on myself at times because I know people look to me as an example of strength and simply want the best for me and so I do not like to let life's struggles get the upper hand on me. I knew I have been slacking on nutrition the last couple months and the numbers clearly proved it. After a few more minutes of waiting, Dr. Latif's warm yet confident presence interrupts my rambling paranoid thoughts. Dr. Latif is an incredibly intelligent and thorough physician. No matter how difficult the situation, I am always confident in her decisions. I never feel rushed during our visits, and there is no doubt in my mind that she has only my best interest at heart! Our relationship as Doctor and patient has grown quite strong over the years as she is a direct result of why I am still alive to this day. As much as I try, the reality is that there are no words to express my deep appreciation for what Dr.Latif has done for me over the years as my cardiologist! She was forced to make difficult decisions and at times was even willing to risk my approval or "liking her" to do the right thing in order to save my life. I believe this to be the true definition of professionalism and compassion. At this stage, I honestly have no idea what the rest of my life has in store for me. I would be lying to tell you that this very notion does not terrify me. However, with people like Dr. Latif in my corner at least I know I have a fighting chance! As I left our visit I felt empowered and ready to continue my fight. My doctor had answered all my questions and provided me with new techniques and strategies to tackle the obstacles I am currently facing. She gave me a plan to improve the quality of my life until our next visit. But MOST important she gave me her time and attention. And sometimes that means more than all the rest. 

A special THANK YOU to all involved in my care over the many years! A piece of my heart beats today for EACH and EVERY one of you. God Bless You ALL!

Monday, July 16, 2012

29 Years Young!

I really don't understand my life sometimes! On one hand, I feel like my physical body is falling apart at a strangely undetermined rate, and that certain of my muscles have atrophied to a point beyond return.  It also seems like I can't go ten steps without needing my suction machine! (In the past I would probably refer to it as "my damn suction machine" but I have since decided that there is no sense in "damning" things that are vital to my existence. While it may be a major pain in my ass, the shear truth of the matter is that "damn thing" keeps me alive.) As if it isn't enough to have a plastic tube lodged into my throat, my body still recognizes it as foreign substance and feels the need to remind me of this by producing secretions that continually obstruct my airway. Being on the topic of foreign bodies, we may as well include my heart and kidney on the list. Because of that fact, I take 12 pills a day in order to keep my body from rejecting my organs. This keeps my immune system very low, and so I am forced to stay far away from anyone carrying any type of infection!!! Even the slightest cold could turn into a vicious case of pneumonia resulting in 1 week in the hospital, 10 days of antibiotics, injections, xrays, EKGs, more xrays, weight loss, pain, nausea, etc. Im not bitter, just careful!  Watching me walk up a flight of stairs has become far from glamorous, and so I prefer to let people go ahead of me and take my time without any added pressure. Physical therapy 3 times a week. Hospital visits every 4 months with random emergency visits. (JUST to make life interesting for my Dad ;). Nutrition maintenance. And then most importantly just being the personality that is CHRISTOPHE, haha.  It's all hard work and I would be lying if I said, "it didn't wear on me every now and again." However, the morning of my 29th birthday I felt extremely happy and fortunate! Waking up and just to be well and in my own bed is enough for me! Too many people take that for granted. As you all know, one week ago I unexpectedly had an Emergency Trach Change!Thankfully that was all taken care of and my neck is no longer sore. On Thursday night, I enjoyed a delectable dinner at the Bouwerie with my immediate family. Being a local restaurant owned and run by two very close friends of mine, the mixture of savory food, endearing company, and hospitable service was enough for me to happily end my birthday festivities right then and there. However as I walked up the pathway to my backyard last Friday night I could feel my heart race with excitement. I seriously felt like a little kid again. Next to Christmas, Halloween is my favorite holiday. And in true Christophe fashion, I love to celebrate BIG! I love it so much so, that my friends and I have started a tradition every year of throwing a Halloween party in July aka July-O-Ween! A severely burned and oddly disfigured doll stabbed onto the fence made me chuckle to myself because clearly this was the affecionate handiwork of my brother-in-law. Every item had a personal touch and I could truly feel all the love and effort that was put into this celebration! I am so thankful for all the wonderful people I have in my life! Its something very special when I can look into the eyes of a close friend and feel their love deep in the pit of my stomach. My throat swells up to the point of pushing out my trach and my face instantly gets ugly as I start to cry haha. Completely caught off guard, this happened to me several times on Friday night. When you truly UNDERSTAND and ACCEPT that life is not guaranteed, daily interactions hold so much more meaning. I know that not ONE day in my life is guaranteed, and therefore I believe surviving an entire year is definitely something worth celebrating. It is important to take in the fact that anything can happen at any moment. This is not to say that people should always have over the top parties, as I often tend to do hehe, but simply celebrate life on your birthday the best way you know how! Many people asked me, "so how does it feel to be 29?" And to each one I replied, "GREAT!"  I have big plans for myself before I turn 30 and I am working hard to fulfill them. At the same time, I try not to be to hard on myself if things don't work out as quickly as expected.  I generally find that how people feel about their age is reflected by where they are in life. If certain goals are met, then people tend to be more accepting of their age. Speaking to my Dad, he explained to me that it seemed that just not too long ago he was turning 30. And this is why I can't stress enough the importance of living in the moment so life doesn't just pass you by. For the first time in a long time my birthday was ALL ABOUT ME...and I loved every minute. Normally when I throw a party, I spend the day running around like a chicken without a head making sure everything is in order. This year however I was able to sit back and relax. I was told all I had to do was show up. It was simply amazing! My family and friends went above and beyond my expectations and did anything and everything to make me feel loved and appreciated. It is because of this that whenever God should decide my time is up, I will surely go a happy man. Thank you ALL for that! 

***A Special Thank You Again to my sisters, Isabelle and Tara for all their hard work in putting the party together! My hat goes off... Claude, Joe, Mark, Dave, Cait, Eleni, Tina, Elsy love u guys!***

Monday, July 9, 2012

Emergency Trach change!

It was late Friday afternoon and I had just spent an incredible day in NYC with two of my best friends! The weather was particularly nice out and I was feeling great! With my birthday coming up, I couldn't help but feel on top of the world! I am especially excited this year because my sister and sister-in-law have been working so hard to plan a special party for me. I cannot wait to celebrate another year in my life! I came home to a delicious dinner prepared by my mother and afterwards decided to take a nap so I could be well rested and energized for whatever adventures my Friday night had in store for me. With a set of a freshly clean sheets, I could not wait to sink deep into my bed! I currently live in the basement of my home, and so my bedroom has the unique capability of simulating a dark dungeon. This is very conducive to my unusual sleeping pattern, haha. As I have mentioned before, every night I sleep connected to a ventilator for respiratory support. Although there is no immediate risk in sleeping without it, I am guaranteed a night of tossing and turning and waking up suddenly in a panic from feeling like someone just wrapped a plastic bag around my head. Not to mention it makes everyone in my family extremely nervous, and rightfully so. This essentially means, no daytime naps in the sun, no falling asleep at the beach, no nodding off in the car, and no dosing off on mom's very comfy living room couch. Even sleeping over at a friend's house has become quite the ordeal. Nonetheless, I've become extremely regimented in my bedtime routine in the last two years. Inner cannula? HME? Suction catheter? Syringe? - check! Insert inner cannula into trach tube. Attach HME. Inflate inner cuff with syringe. Turn on very loudVERY ANNOYING, and makes my room unbearably hot, oxygen concentrator. And finally, turn on ventilator. Tonight however, the inner cuff DID NOT inflate and was officially BLOWN!!! My heart started to race and my palms felt tingly and sweaty. Immediately I knew what this meant. Frantically, I grabbed the syringe and tried to inflate again. Maybe I had done it wrong? Still nothing. A defective inner cuff at 6pm on a Friday in July only meant one thing...New York Presbyterian Emergency Room :( The tears just came, I couldn't even control it at this point. The whole situation was so stressful on so many different levels. Yet somehow what bothered me the most at that moment, was knowing that I had to now walk upstairs and tell my mother (who had JUST gone outside to relax after a long day of seeing patients) that we had to spend our entire Friday night in the ER. I took some time to let out all my emotions and frustrations, and I made sure not to hold back. I cried, I cursed, and I cried some more. After "venting" a while, no pun intended, I washed my face, and collected myself to face the inevitable.  The ride into the city was a quiet one. This was one of the rare times I was actually hoping for traffic. At this point my Friday night was already ruined so any further delay in the process was welcome. Strangely enough at the same time, I also couldn't wait to see the sign for Exit 2 on the PIP, on the way home! Another common misconception about people dealing with illness is that these things get "easier" or "less painful" over time. This couldn't be further from the truth. Especially if your last experience was a horrific one. Every needle prick hurts JUST AS MUCH as the one before it. I could tell as we entered the waiting room that the night was going to be VERY LONG! I was so scared I didnt know what to do with myself. Everything about the environment was giving me severe anxiety. The smell of the latex gloves, alcohol swabs, and oxygen tanks permeated the air. Patients crying, coughing, and vomiting in all corners of the room. We waited almost 3 hours before being seen by a resident ENT (Ear Nose and Throat doctor). His untainted compassion made it quite obvious that he was fresh out of medical school. His approach was gentle and thorough as he explained my options. He proudly stated that he had done hundreds of trach changes before and was certain he could resolve the issue. His confidence lessened however,  after examining my stoma site and he realized that this was not going to be an average trach change. Doctors have told me before that my body heals very well and so the opening to my trach is very narrow and difficult to manipulate when switching out. Reluctant to make a bad situation worse, he decided to call for assistance and so we waited another hour or so for the senior resident to arrive. Mom and I managed to have some interesting conversations, and the patient to my left was clearly around for theatrical purposes only, which was quite entertaining. Just as I started to relax a bit, the resident doctor made his way over with a daunting sliver briefcase, his senior advisor directly behind him. Every now and again an uncomfortable position is made better by the individuals involved, and this was one such time. The senior resident had such a confident yet soothing bedside manner. I could feel my heart start to race again as they began to set up supplies and unhinge the straps securing my trach in place. Putting all my pride aside, I put out an eager hand for the nurse to squeeze. 1 week away from turning 29 and I have NO SHAME in being "a baby" sometimes.  Having a hand to hold always seems to make situations like that easier! I felt a great deal of pressure as the doctor pinned my neck down and yanked out the trach tube. "BREATHE.....SLOWWWWW.....are you ok," the resident asked?! My ears were ringing now and I tried to focus on the nurse's hand, which i'm sure I had broken by this point. I tried to stay calm as they cleaned my stoma site, taking deep slow breaths. Seconds seemed like hours. The doctor now attempted to insert the new trach tube. Something was wrong. The look in his eye was a dead give away. The senior resident calmly took the tube and said, "let me give it a try." POP! I felt the warm sensation of blood trickle down my throat. It was finished. Tears streamed down my face for the second time in one night, but this time from a mixture of intense pain while also knowing that this was surely not the last time. The pain on the way home was almost unbearable, and I couldn't wait to pick up where I had left off and reclaim my position in bed. Txts from family and close friends brought my spirits up, and as we entered the driveway I suddenly felt extremely grateful to be safely back at home. There were many times that a casual trip to the hospital resulted in days, weeks, and sometimes months! I'm so lucky to have gotten this over with, and thankful that something like this didnt happen next Friday on my birthday. Instead I had to sacrifice a few hours of fun to do what I had to do. This is the life I live, and I'm perfectly ok with that!

Tuesday, July 3, 2012

YOLO! (You Only Live Once)

YOLO (You Only Live Once)! The very phrase is probably the basis of my entire existence. It is a constant reminder to cherish every breath and moment as if it were my last. A reminder not to sweat the little stuff and always go BIG or GO HOME! However, somewhere along the line I feel that society has managed to take this beautifully inspiring concept and twist it into an excuse to behave like an ignorant ASS! It has corrupted our youth into thinking that no matter how ridiculous your actions, shouting a loud and proud "YOLO" afterwards is enough to justify them. My hope is that anyone reading this will realize that only living once should motivate you to be the BEST PERSON YOU CAN BE! It shouldn't justify you being at your worst. Don't take things or people in your life for granted! Instead think about the fact that your parents won't be around forever.  Spend time with them. Give them a break from time to time because in the end, all they want is the best for you. Surround yourself with positive friends that make you laugh. Don't be afraid to be silly and let loose every now and again. A big thing for me is to try to mend any bad or broken relationships! I don't like conflict. Not to say things will ever be the same again, but at least we can be civil and in a good space. I find one of the worst things in life is regret. I also think it is very important to spend time with myself. Some of my favorite times have been laughing to myself while watching Heavyweights, or any other classic comedy. Live life to the fullest, take chances, say yes to something daring, take vacations. Your entire world can flip upside down at any second. Life isn't always going to be pleasant as I can remind you first hand, lol. And remember, it is perfectly healthy to be angry and sad. After sufficient time, however, I always make sure to do things to lift myself up and slowly get back to a happy state of mind. When your mind and core are pure you can persevere through anything. All i'm saying is don't walk around lowering yourself with "YOLO" as your security blanket. Love yourself! If no one else, YOU should be proud of the person you are and make positive choices to reflect that. Wishing you ALL a very safe and happy July 4th with wonderful family and good friends!

Monday, July 2, 2012


Its such a strange feeling when you believe you can do something in your mind but your body proves completely otherwise. Sometimes i have dreams of myself running miles, or hiking up a cliff. My sister will often joke about me wanting to do something that most people try to avoid. It's funny the way one's mindset can change when no longer capable of carrying out certain actions.  Why is it that somehow life has a way of making what we cannot have so irresistibly appealing?! I'm not a particularly large water drinker, but when I was on dialysis and fluid restrictions, it was all I could think about! Now, I'd give anything to run again, feel my adrenaline rush as my feet hit the ground. I miss swimming too. Wading around in the shallow end of a pool is nice but every now and again I get the sudden urge to do a triple summersault into a backwards swan dive! I can see her face now LOL! My sister is also usually the one to bring me back to reality and remind me that at no point in my life was I, or aspired to be, a professional diver. That is one dream I can probably live without. Its good to be grounded and realistic. Live within your means. But at the same time don't limit your goals or life expectations. I am a dreamer. I always have been. Any of my close friends can atest to the fact that I have quite a wild imagination. I consider this to be one of my positive qualities because these dreams are what motivate me to push myself everyday. That being said, by no means is it easy. I try to avoid stairs at any and all costs and I get out of breath when I walk long distances. Some days i'm just not in the mood to "deal with it all". But somehow I do. I spend time thinking about the things that mean the most to me. The things that make me really happy. I make an effort not to live in the past or look too far ahead into the future. I live in the moment and count my blessings no matter how few they are. It really doesn't take much to change your whole outlook for the day. Go outside, disconnect, meditate, read, watch a childhood cartoon or movie, eat something you LOVE! Sometimes its something as simple as cuddling with my pup Brandi. In life, no matter how ugly things get, you can always find the beauty...you just have to know where to look!

Sunday, July 1, 2012


I woke up today feeling really great! I had my second radio interview last week Monday night with "The Chris Hughes Show" @MTRradio.com. It went really well and the response has been unbelievable. The entire experience is quite surreal as I can finally start to see my purpose in life unfold before me. The lightbulb has finally gone off Dad! I feel motivated now, more than ever before! I can't wait to affect the lives of people all over the world. I am working hard to set up a foundation and fundraiser to further awareness for my condition: Myofribullar Myopathy! I am also working on a motivational autobiopgraphy! I am ready for the next chapter of my life and my intentions are simply to GIVE BACK! I find so much gratification in making other people happy. Some may call me a pushover, or say that i'm too nice, but I really just can't help that. Its just a part of my personality. This is not to say that I am perfect by any means. We all have our flaws, however, it is our ability to recognize and identify them which distinguishes us among each other. I always seem to get so nervous right before doing any kind of public speaking or entertainment. But once i get started all the butterflies go away and a more confident Christophe takes over. Monday night was no different. To make matters worse I realized I had left my red plug somewhere at home which made me really anxious. Although I don't use it nearly as much as i should, I prefer to have it on in public because I feel that it lowers the discomfort factor. It seems that when I don't have my plug and use my finger to cover my trachea to talk, people are more inclined to make faces and or ask questions. I've grown accustomed to both and neither bother me. I welcome questions because it gives me a chance to show life from my viewpoint and shed some light on my condition. Amazingly enough I find that within just a few minutes my story manages to touch people on a deep level. It is still strange for me because even though I have dealt with illness since my childhood i am no longer shocked by my extensive medical resume. In recent months, I have decided to make a conscious effort to be aware of my condition without letting it get me down. To be grateful and count my many blessing and realizing that situations could always be worse. Wise words a very good friend always used to remind me. The phrase is seemingly so cliche, yet holds so much power to keep people's thoughts in perspective on a daily basis!