actorartathleteauthorbizcrimecrosspostcustomerservicedirectoredufoodgaminghealthjournalistmedicalmilmodpostmunimusicnewsworthynonprofitotherphilpolretailscispecialisedspecializedtechtourismtravelunique

I am a survivor of a pacemaker implantation, two heart transplants, dialysis, a kidney transplant, diabetes, liver stones, a cholecystectomy, a left lung collapse, and a tracheotomy. 1 Man, 3 Hearts, 9 Lives: AMA!

Apr 17th 2017 by 1Man3Hearts • 17 Questions • 360 Points

 My name is Christophe Lafontant, I am a thirty-three year old young man, currently living with an extremely rare genetic disorder known as Myofibrillar Myopathy. I first became sick at the age of six; however, I was not fully diagnosed until the age of twenty-seven. I experience substantial weakness in my legs, walking with the use of leg braces and primarily using a wheelchair. I have also recently become aware of significant weakness in my shoulders, hands, and feet, making everyday activities very challenging for me. Over the course of my life, I have undergone a number of serious and complicated surgeries, often accompanied by extremely harsh side effects. I refuse to allow my limitations to hold me back from living a full, happy, and positive life.   I  finally decided to share my unique story with the world by self publishing a memoir entitled, [1 Man, 3 Hearts, 9 Lives](https://www.amazon.com/Man-Hearts-Lives-resilience-survival/dp/1518837069/ref=sr_1_1?ie=UTF8&qid=1491663995&sr=8-1&keywords=1+man+3+hearts+9+lives) in the hopes that anybody going through a similarly difficult situation may feel inspired and motivated to never give up! Ask me anything!  

Link to: Public Proof for IAMA

Q:

How do you afford all that medical care?

A:

My mother is a physician, and so I was fortunate enough to be placed under her excellent insurance plan, which covered most of my extensive needs. I am still covered under a great plan, and I receive disability funds monthly due to the fact that I am unable to work. I would not be alive today if not for my mother and having such a solid insurance plan.


Q:

he gave love a bad name

A:

I fell sick at the age of six, collapsing in my NJ home. At that time, doctors believed that I was suffering from an isolated heart issue. As I grew older and my body continued to develop, I began to experience more issues which included muscle weakness. A genetics test at the age of 27 revealed my condition to be Myofibrillar Myopathy which is known to present itself with an early onset of heart failure in some cases followed by muscle weakness, & respiratory failure.


Q:

did that stuff come with a lifetime warranty?

A:

Hahahaha! One can only hope! I wasn't supposed to make it past the age of seven, and yet here I stand. I'm grateful to have come this far as I've seen people die for much less. I'll promise you one thing though, I plan to ride this thing until the wheels fall off, that's for sure!


Q:

What is your secret to remaining so positive?

A:

For me it's a combination of things. To start, I am blessed with extremely supportive family and friends. When I'm down, they are always there to pick me up. This also gives me something to live for. I make sure to engage in activities that make me happy and do things I love. I also try to change my perspective whenever I get in a funk and focus on the things I HAVE as opposed to the things I don't. The way I see it, I have the choice to either be miserable or to accept my circumstances as difficult as they may be. I have my days, but overall I make a conscious effort to be grateful!


Q:

I have type 1 diabetes which doesn't seem too bad but I struggle with people seeing me differently when I have to do shots of insulin. I worry they see me differently because of my disease. Do you struggle with this? If so, how do you handle it?

A:

Yes I do, and I agree, it's very challenging. I actually spent the better half of my life trying to conceal my illness. When I was diabetic, I too was embarrassed about my shots. I didn't want to be pitied or viewed as weak. When I was finally trached, I couldn't hide anymore. I felt like a monster and was so worried about people whispering, staring, or laughing at me. However over time, I decided I wasn't going to allow my condition to define me. I held my head high and owned it. People responded well to that. They could sense my confidence and admired my attitude. I've realized it's ok to be different and have since made it a personal mission of mine to change the way people view illness.


Q:

This actually helps a lot. I don't get to talk to a lot of diabetics who really embrace it. Everyone I talk to seems to share this sense of shame about it. Thanks dude!

A:

I'm happy to help, too often people focus on the negative when it doesn't have to be that way. It's a process, but be proud of your struggles, you'll be surprised how many people look up to you for it. I genuinely wish you all the best. You can always message me in the future for support also


Q:

What's your dating life like, and what kind of girls are you into?

A:

After years of hiding my true sexual identity from family and friends, I eventually came out as bisexual in my late twenties. Oddly enough, I wish I had come out earlier because nothing changed...my family and friends didn't care at all and never treated me any differently. While I am still sexually active, dating has become a bit of a struggle. I require a lot of care at this point in my life, and so finding someone willing to take on such a responsibility is quite a challenge. I get it tho, and I remain positive and hopeful that there is in fact someone out there for me. So I just remain patient focusing on my own well being in the meantime. As cliché as it sounds, I'm big on personality. Anyone who can make me laugh has my interest. I like outgoing people who aren't afraid to be themselves flaws and all. Cleanliness and smelling good are both big turn ons for me. I particularly hate liars and controlling people because I'm a free spirit.


Q:

Oh. Interesting. It's funny, while I was typing my question, I thought of saying 'partner' or something instead of 'girl', but I just went with the odds. pretty good list. honest people that respect themselves as well as you. surprisingly difficult to find. glad you're focused on your own health and your own shit. if someone perfect comes around, fine, but if not, you're doing OK without them. I like that mentality.

A:

Hahaha, it is funny! Everything's gotta be so PC these days. People are so sensitive, but I don't mind the assumptions at all. Thanks for the kind words and support. It took a long time for me to get to this point and be secure with being on my own. I feel like for a long time I was looking for someone to validate me. Eventually, I realized no one is ever gonna love me more than ME!


Q:

Exactly what I was thinking

A:

What an honor for that to even be a consideration! He is one of my favorites. I would love that to be the case, perhaps then a Nobel Prize would be in my future as well ;) Nonetheless, I'm taking this as a compliment!


Q:

He survived a shit ton of different diseases that would normally kill people in the early 20th century (including anthrax), survived bodily injuries including 2 consecutive plane crashes before killing himself at 62.

A:

Yup, absolutely incredible (all except taking his own life)!!


Q:

What do you want to do in life?

A:

I want to use my voice and words to inspire people who are struggling with chronic illness as well as any others dealing with difficult life challenges. I want to give hope and motivate people to enjoy life and not take things for granted. Having a positive outlook and mental attitude is vital. "Enjoy the things you have, before time forces to appreciate the things you once had!"


Q:

What are your hobbies?

A:

I love listening to music! I find it always puts me in the best mood. I enjoy reading/listening to audiobooks, graphics design/video editing projects, and playing video games. I also recently started flying model airplanes and drones with my uncle, which has been such an awesome learning experience! Staying busy is important for me because being left alone with your own thoughts can get pretty scary sometimes.


Q:

Have you ever felt serious pain from any of your conditions?

A:

Absolutely! There were several times that the pain I felt was excruciating and even unbearable. I spent seven months in the ICU awaiting my second heart transplant. I would have to say that was among the most difficult periods for me. Not just due to the amount of pain I experienced but the long duration of time I was in pain as well. That was the closest I came to death, and my doctors weren't sure I would make it. I am happy to report however that although my body is extremely weak at the moment, I am so lucky to not be experiencing any pain.


Q:

Thank you for sharing that information. I know that I wouldn't be able to deal with a fraction of what you've been through.

A:

I think you'd be surprised actually. I didn't think I could handle any of what I went through either. I was so scared. When the idea of transplant was first presented to me I was completely against it. We are all so much stronger than we think until we are left with no choice. We adapt!


Q:

Do you feel like you've absorbed some part of the spirits from the people who's organs you have?

A:

Thankfully no! While I am extremely grateful for the generous gift of life, I prefer that my spirit be the only one in my body. I would be way too creeped out otherwise.


Q:

Are you Frank Gallagher from Shameless?

A:

Can I upvote this more than once? Because that is just amazing, haha! Come to think of it, we have a hell of a lot more in common than I ever realized while watching. I like to think my personal hygiene isn't as horrific though, and my disability payments are justified. Thank you! :)


Q:

It just reminded me like when you experience Frank you are like "kidney failure? That won't kill Frank" like Frank never worried about survival he just worried about living and in a way that's the reason he can't just 'die' he will never die he will just live until he just doesn't anymore

A:

Hell yeah! I love that, you're absolutely right!