“A Breath of Fresh Air” (Part 1)

Mishka, my personal aide, winked at me as we pulled up to dialysis, signaling to show me that both drop-off spots directly in front of the dialysis center were vacant. Given all the equipment we needed to lug inside with us, we appreciate these small victories. It was a quarter past ten, and we had just missed the second shift rush. The scene in Englewood was a quiet one on the morning of Wednesday, May 6th. The skies were gray, and there was a chill in the air. I knew that this was not a day I’d be particularly sad to miss out on during my four hour treatment. As I rolled into the dialysis center, I was kindly greeted by Dawn, the receptionist, through a glass window on my right-hand side. Her eyes lit up, letting me know that her smile was just as big as ever underneath the surgical mask covering the lower half of her face. She is always so sweet when welcoming patients! I am sure she must have her own personal issues dealing with, but despite that she is always such a pleasure.

I glanced over to my right to notice that the waiting room was completely empty, which was a relief. Amid the viral global pandemic taking place, the less people in any given space, the better. I heard the door to the treatment area buzz as Dawn suddenly came bustling through in full PPE (personal protective equipment) pushing a small rolling table. On the table, neatly organized was an electronic in ear thermometer, alcohol wipes, masks, and a chart with everyone’s recorded temperatures. Once things began to get more serious in our area in regards to the virus, precautions were immediately put in place at the center requiring that anyone entering the facility be wearing a mask and that everyone’s temperature be checked. Being that we are all high risk patients, I was very relieved those steps were taken so quickly to keep us safe. Every treatment puts us at risk during this time, and so naturally everyone is just a little on edge making sure to consistently hand wash and maintain proper social distancing guidelines. After receiving clearance, Mishka and I made our way back to the treatment area. Jerry my respiratory therapist had now arrived as well, which meant we were all set to get started.

“Wassup Chris! How you feelin?” asked Jerry as he carried in a wooden chair with worn down mauve colored cushions from the waiting room, back to the treatment area.

“Good man, no complaints today!” I responded.

Given the complex nature of my condition, the center requires that I be accompanied by a respiratory therapist (whom I had to outsource and pay for out of pocket) for each treatment in the event of an emergency. However, if I’m being honest, Jerry isn’t very good at his job. He’s nice enough, but working with me is more of a technicality. I consider myself relatively self-sufficient when it comes to suctioning and my trach care. I am the only vented trach patient in the entire facility. That being said, I am pretty sure that Jerry’s presence is more so to make the other staff members feel at ease being that they never deal with patients like me, even though he really doesn’t do much. He sleeps during most of my sessions, occasionally waking up to help me reposition. Sometimes his music is blasting so loud in his earphones, that he doesn’t even hear me calling for help. One of the nurses is usually then forced to wake him up. It’s not the most settling feeling in the world, and if you ask me a complete waste of money. Now I know what you’re all thinking, but it hasn’t been exactly easy to find a respiratory therapist for my assigned time slot. And since the center refuses to dialize me without a therapist present, Jerry is it. Jerry identified my treatment chair in the far right corner of the room, (which changes periodically) and began setting up my ventilator, as Mishka and I made our way to the handicap accessible standing scale to the left.

“86.0 my friend,” Mishka read my weight out loud as I rolled up onto the scale.

“Minus 32.1 for my chair is 53.9. That makes me 2.5 liters over my dry weight. Thanks!”

Patients weigh in before and after every treatment so as to let the nurses know how much fluid needs to be/is pulled off during each treatment. After getting my weight, we went over to my chair which was located next to the window. I’d love to tell you about the amazing view, but I’m not usually awake long enough to take in the beauty of the remarkable parking-lot scenery. The treatment chairs at dialysis are by no means comfortable for my bony ass, and so Mishka knows to always bring two pillows along with us. One pillow to place under my butt, and one for behind my head. Mishka put the pillows down on the chair and hoisted me up from my wheelchair transferring me over in one swift movement; he is deceptively strong. He removed my sneakers, leaving on my leg braces for added support. I do this because the weight of my blanket would only exacerbate my foot-drop, pushing my feet downwards causing me severe pain about 30 minutes into treatment. After removing my sneakers, Mishka then placed my blanket over my legs and adjusted my positioning until he knew I was comfortable. He, I must say, is excellent at his job which is not an easy one. There are so many minute details involved with my care, and he doesn’t skip a beat. Most importantly, he genuinely cares, and so I commend him not only for being so precise, but also for making me feel safe in the process.

“Hi Chris! Ready to start?” asked my nurse, Xin, as she made her way over to my machine–a blue chuck pad wrapped up with all my supplies for treatment in her hands.

“Yes, he’s ready,” said Mishka as he patted me on the legs, “I go home now. Text me if you need anything.”

“Thanks Mishka! How do you feel today Chris? Xin asked as she drew the curtain closed for privacy.

She then pulled up my shirt and started to prep the catheter located in my right shoulder. Technically, no one except the nurses are allowed behind the curtain while a catheter patient is being put on/and taken off the machine. This is done to limit exposure to possible infection. I do not have a working fistula at the moment, and so I am dialyzed through the port in my shoulder. Although I had just told Jerry I was fine, my answer for Xin was a little different as I reclined my chair and noticed a slight rattling in my chest. It’s crazy how quickly things can change.

“I’m actually starting to feel a little short of breath. Do you mind asking Jerry to come over and help me to suction please?”

Normally I’d wait for Xin to finish getting me hooked up to the machine, but something was off, and I didn’t like how I was feeling. My hands have also been weaker than usual recently, therefore I need extra help doing certain things. Jerry came over and began to suction me. Usually after a couple passes I start to feel better, but for some reason that morning I was still having trouble breathing.

“You good?” asks Jerry trying to assess whether or not to keep suctioning.

Anxious to start my treatment, so that I didn’t have to be there one second longer than need be, I reluctantly nodded yes. But the truth was, I was not good…at all! Jerry shut off my suction and once again stepped outside the curtain. Still feeling very uncomfortable, I glanced over to my left to notice that the tubing of my suction machine was filled with bright red fresh blood. My heart instantly went into rapid palpitations as an immediate rush of fear and anxiety paralyzed my body. My hands were shaking as I fumbled to deflate the inner cuff of my trach so I could speak.

“Xin, can you get Jerry again please? I’m bleeding!” Still unaware of the urgency of the situation, Xin pulled the curtain back slightly and signaled for Jerry to return.

Bleeding with suctioning can typically occur for me, but that’s usually only after a fresh trach exchange.

“Jerry!!! I’m bleeding man!”

“Yeah, I seen that! What’s that from?”

I was honestly shocked that he saw I was bleeding and said nothing! Within seconds, I could feel my lungs filling with blood. I was now starting to suffocate. Realizing that both Jerry and Xin were completely unaware of how serious things were getting, I knew I only had a matter of seconds to communicate that this was rapidly becoming an emergency situation.

“I…..I….can’t……brea,” I tried to sputter out.

Seeing the look on my face, Jerry started to panic and attempted to suction me again. It wasn’t helping. The blood was now too much.

“I can’t….breathe,” I tried to say again.

The mask! They couldn’t hear me through my mask! I quickly pulled down my face mask and grabbed Xin’s forearm tightly looking her dead in the eyes as I mouthed the words, “I can’t breathe.” Xin’s eyes widened as she read my lips, so much so that I was able to see into her soul, and all I saw was nothing but fear.

“Call a rapid!!!!! Stat!!!” she cried out. “Chris? Chris stay with me, okay! You’re going to be fine! Just stay with me!”

But again, I could see in her eyes that she did not believe that. Blood was now starting to spew from my stoma (the opening of my trach), and I was in a full blown panic. My first instinct was to call Mishka and get him to return. Fuck, no answer! My fingers fumbled as I desperately tried to dial my mom. However, I unintentionally pressed the FaceTime button, and I couldn’t even talk so that was not the best idea.

“Chris?! Chris what’s wrong??? Oh my God Chris!” my mother pleaded as she answered the phone only to see me staring back at her in utter fear–blood pouring out of my trach.

I didn’t want her seeing me like that, so I quickly put the phone down forgetting to hang up. Her consistent pleas for any answer as to what was happening echoed in my ears over and over. But all she heard in response was the commotion of everyone now trying to save my life. (I’m so sorry you had to experience that Mom!)

“Guys I need the emergency team here now! He’s desatting. Blood pressure and heart rate are extremely elevated,” screamed Xin.

“Please somebody tell me what’s happening to my son!” my mom begged.

“We’re trying to save his life right now Jennifer. You have to give me a second,” Jerry finally responded.

Jerry went for another pass with the suction. Still nothing. What was happening?! I couldn’t understand why no blood was able to be pulled out with my suction tube. Suddenly I noticed that my suction machine was not even turned on. Xin had by now pulled back up my mask for my protection, however in doing so limiting my ability to communicate to them that my suction machine was still not on. I was now fully suffocating and started to prepare for what I believed to be the end. 💙💙💙

*All names have been changed due to privacy reasons

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Who Is “1 Man, 3 Hearts”?!

My story begins with my collapsing in my New Jersey home one night at the age of six, due to complete heart failure. Doctors were convinced that I would not live to see my seventh birthday. Completely perplexed by my case, I was transferred to a research hospital in Maryland where I had an emergency dual chamber pacemaker implanted. Three decades later, I have defied all the odds against me; I will be turning thirty-seven this summer! Since the age of six, I have survived two heart transplants, a kidney transplant, gall bladder removal, lung collapse, pain medication drug overdose, partial thyroid removal, and a tracheotomy. Unfortunately my transplanted kidney failed two years ago, placing me back on dialysis three times a week. With an O- blood type, I patiently await the miracle of another kidney transplant.

At the age of twenty-seven, I was diagnosed with a rare muscular disease known as Myofibrillar Myopathy. This disease progressively attacks the various muscle groups of a person’s body over time. In my case, it was discovered that this disease was also responsible for initially attacking my heart muscle when I was six. In the last two years, I have lost usage of about eighty percent of my bodily function due to my illness. I am currently wheelchair bound, sleep with a ventilator every single night, and require the assistance of a full time (24/7) personal aide who resides with me. To make matters worse, shortly after going into respiratory failure at the age of twenty-six, I discovered a deep-seated family betrayal that rocked my entire world.

I have chronicled my entire life story in a self-published memoir entitled, 1 Man, 3 Hearts, 9 Lives, which is available for purchase on both Amazon and Barnes and Noble online. After receiving much positive feedback from the book, I began speaking locally at schools, libraries, and churches in my area doing my best to inspire others. I hope to one day take my motivational speaking career from a local level to a national one. I also believe it is important to bring awareness to rare diseases as well as the importance of organ donation. Therefore, I started The Christophe Lafontant Foundation for Myofibrillar Myopathies. My foundation provides both emotional and financial support to those affected by MFM. I also work very closely with the pediatric transplant team at New York Presbyterian Children’s hospital providing counseling for children awaiting heart transplants, as well as organizing events and toy drive donations year round.

My life has always been full of challenges, it’s all I’ve ever known. Like most people, I’ve had my fair share of dark moments, but giving up has just never been an option for me, and it shouldn’t be for you either. Most of us are not prepared for just how challenging life can be, but I am here to help you dig deep and find the inner strength you need to push through. I personally refuse to allow my obstacles and limitations to keep me from enjoying life and living everyday to the fullest. If anything, my trials and tribulations have only made my spirit stronger and have given me a deeper appreciation for the value of life. As tough as things got for me, I never gave in to weakness. Instead, I channeled that energy and was able to gain a great deal of perspective and learn many valuable lessons. My ultimate goal in sharing my story is to help others who may be facing difficult circumstances and encourage them to keep fighting. If I can do it, so can you!

Follow my story as I give you personal insight into my life and the various ways in which I manage to get through my obstacles. And please feel free to comment and ask questions! Your support is very much appreciated 🙂

My name is Christophe Lafontant and I am “1 Man, 3 Hearts.” 💙💙💙

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