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 788   0  

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!

 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

 146   0  

Hate to be the bad guy but how did you get so many organ transplants when some people wait years?

 81   0  

I hardly see you as a bad guy for asking such a question. Especially given the fact that I've wondered the same thing myself on more than one occasion. Quite honestly, I don't know exactly how I managed to get so lucky. Like, why me as opposed to anyone else? What makes me so special?? My mother is a physician and was always a major advocate in pushing for me to get the best care possible. I was admitted to some of the top medical programs in the country. I assume these factors, along with strategizing of doctors to work the system played a part to some degree. For example, doctors will sometimes make patients sicker to get them higher on the list. I have a cousin who has been waiting close to 20 years for a kidney, and it hardly seems fair that I got one in under 2. I'd be lying if I said there weren't many times I felt guilty. Especially for receiving a second heart after neglecting to take care of my first. I think that is why I'm extremely passionate about giving back and helping those waiting/suffering in any way that I can. I want to do my part, so that all my blessings are not in vain. That is my I ultimately decided to write my memoir, 1 Man, 3 Hearts, 9 Lives in order to share my story and give others hope. I volunteer my time and do my part to remain very involved with the transplant program at my hospital coordinating organ/tissue donation awareness events and hosting annual toy drives for hospitalized children during the holidays!

 37   0  

I appreciate your honesty and humbleness on this topic. My brother died when he was seven while awaiting a heart transplant, and the drunks, smokers, druggies, and obese people who bring their problems on themselves and require an organ transplant infuriate me. Realize the for most organ transplants to succeed, someone else has to die. Do not take that sacrifice lightly, and treasure that second chance you are given.

 4   0  

I am so sorry to read about the loss of your brother, especially at the young age of 7! Your feelings on infuriation are 100% valid. The gratitude I feel for my second chance at life goes beyond words. For that very reason I have decided to not only make the most of own life but to use it in anyway that I can to inspire at help others. Thank you for opening up about your own feelings and reinforcing my mission and will to survive!

 19   0  

How did you "not take care of your first one"(heart)?

 34   0  

I got careless and didn't take my anti rejection medication regiment as seriously as I should have. With Transplant, immuno suppression drugs are vital. They must be taken regularly and on time. I started feeling so good that I got too comfortable, taking my meds late and sometimes even missing entire doses. My bad habits eventually caught up with me causing me to go into a rejection that I was unable to recover from without getting a new heart. Safe to say, this is a mistake I will never make again.

 28   0  

Fuck, dude. I feel bad if I get lazy and eat fast food for dinner twice in the same week. I can't imagine how you feel when your body starts trying to kill your heart because you didn't take some medicine and you have to go through the whole ordeal of a heart transplant all over again.

 21   0  

It was devastating! I couldn't even wrap my head around the idea when the doctor uttered the words, "I'm sorry Christophe, but the pressures in your heart appear to be well above normal, and extremely high. We will need to place you on the list for a re-transplant at this time."

And you nailed it bro, all because of missing a few doses of medicine. I just never imagined such a (what I considered small at the time) mistake could cause so much damage and nearly take the life I had fought so hard to keep.

 90   0  

[deleted]

 51   0  

I don't disagree in the slightest. It's at the top of my list of biggest regrets. I was a reckless teen (no excuse) and failed to realize the impact my bad decisions would have on me. Again, that's why I feel this need to help others and make any attempts to make up for it. But I hear you bro, trust me

 20   0  

Well thank you for opening up about it and being honest and remorseful. By not engaging in the "blame-game," you cut through a lot of potential bullshit and get the important parts of the story out there.

I know that when I finally get the Kidney and Liver I need to see 40, I'll treat them like solid gold.

 6   0  

I really appreciate that! I made the conscious decision to open up about my struggles in order to help others. It does me no good to make excuses for my mistakes and wrong doings. In order to achieve my mission, I must be completely open, vulnerable, and honest! People can detect fake bullshit from a mile away.

The fact that you know to treat your organs like gold when you eventually get them is a mission accomplished all on its own in my eyes!

 11   0  

Yeah, it's almost like he was a stupid young kid (as they are wont to do) going through a world of shit, and acted, I don't know...human?

Pray you never fail (again) in a way people can judge you about, all without knowing your life.

Seriously, I understand it wasn't the smartest choice, both for him, and someone who matched that heart that could have had it, but damn, be a human, please?!

 4   0  

Thanks for this!

 9   0  

I'm sorry but your behavior piss me off. My mother had a kidney transplant and my parents have been always extremely careful with her medication and my family physician has been always on top on her condition, adjusting her anti-rejection drugs throughout the years. She is now undergoing chronic kidney rejection which means that it is going to be rejected sooner or later, and we are now aggressively keeping her blood pressure in check in order to drag it out until she finally have to undergo dialysis again after 16 years.

The fact that she has to undergo dialysis again in the near future is stressing the shit out of her and the rest of my family. She has on a few occasions expressed that she will rather die than to go to dialysis again. It took us a lot of effort to give her strength to fight on and we have no clue when we might have a second chance for her to receive a another kidney. 16 fucking years, dude, we kept her kidney alive for 16 fucking years! I'm sorry, I just fucking can't right now.

 7   0  

I don't blame you one bit for your anger. My behavior was irresponsible and reckless as a teen with my first transplant. My whole family was so upset and disappointed in me, my doctors were infuriated. If I could go back and change things I would. I fucked up, and I own that with 100% responsibility. That's why I've chosen to open up and make myself vulnerable in order for people to learn from my mistakes. I visit patients in the hospital and warn them of the severity of failing to take care of their organs. It has been 17 years since my last transplant, and I want my life to mean something in the sense of helping others.

I'm so sorry to hear about everything your mother has gone through. She's lucky to have you and the support of your family. I genuinely wish her all the best going forward. Again, I accept any anger you have towards my carelessness in the past, for what it's worth!

 2   0  

You should considering making a note in your other post about your responce. I suspect you are going to have to field a lot of similar replies.

Which immuno supressent were you taking? Inmuran, cellcept? (Not sure if the proper spelling). Also assuming you take Prednisone? What doses if you don't mind saying?

 3   0  

I appreciate the heads up, and I will do that!

I am taking Cyclosporine (Neoral) 125mg twice daily, And Cellcept 750mg twice daily! I am no longer on Prednisone as I was weened off. Thankfully so because the side effects were so awful!

 2   0  

Well at least you are someone who can learn from their mistakes. Stay safe

 3   0  

Thank you, I certainly have and plan to make the best of my life going forward!

 50   0  

How do you afford all that medical care?

 84   0  

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.

 20   0  

After so many organ transplants and your affluence in health care, do you ever feel like you're taking someone else's chance?

 35   0  

Yes, many times. And that is precisely why I am on a mission to make the most of my time here and change as my lives as I possibly can, for the better.

 14   0  

All of it.

 19   0  

Oh man, it's so much I don't think I could ever give a truly accurate amount. But ball park: figure heart transplant costs approximately $275,000...X2, kidney transplant approximately $80,000. And that's not including hospital admission, immuno suppression drugs, dialysis treatments, medical supplies etc. It is honestly a wonder and a miracle as to why I'm still here. It is truly insane!

 12   0  

Yeah my dad had a relatively simple double bypass and had a stroke months later. The surgeries, treatments, and drugs bankrupted them. So I feel you.

 13   0  

Yeaaa, my mother was forced to file for bankruptcy last year. Closing in on age 70 she should be retired but works like a dog still just keep my family and I afloat. Medical insurance in our county is quite ruthless. I started a foundation 3 years ago to support people with chronic illness, and I do what I can to help people cover their expenses. But even that comes with so many roadblocks, rules, and regulations.

 12   0  

I'm a doctor and thanks for sharing your story.

 9   0  

No need to thank me, but I do truly appreciate you taking the time to read and check it out!

 39   0  

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.

 9   0  

Myofibrillar Myopathy

  • Myofibrillar myopathy is part of a group of disorders called muscular dystrophies that affect muscle function and cause weakness. Myofibrillar myopathy primarily affects skeletal muscles, which are muscles that the body uses for movement. In some cases, the heart (cardiac) muscle is also affected.

  • The signs and symptoms of myofibrillar myopathy vary widely among affected individuals, typically depending on the condition's genetic cause. Most people with this disorder begin to develop muscle weakness (myopathy) in mid-adulthood. However, features of this condition can appear anytime between infancy and late adulthood. Muscle weakness most often begins in the hands and feet (distal muscles), but some people first experience weakness in the muscles near the center of the body (proximal muscles). Other affected individuals develop muscle weakness throughout their body. Facial muscle weakness can cause swallowing and speech difficulties. Muscle weakness worsens over time.

  • Other signs and symptoms of myofibrillar myopathy can include a weakened heart muscle (cardiomyopathy), muscle pain (myalgia), loss of sensation and weakness in the limbs (peripheral neuropathy), and respiratory failure. Individuals with this condition may have skeletal problems including joint stiffness (contractures) and abnormal side-to-side curvature of the spine (scoliosis). Rarely, people with this condition develop clouding of the lens of the eyes (cataracts).

 3   0  

Thank you for posting this information!!

 19   0  

did that stuff come with a lifetime warranty?

 33   0  

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!

 6   0  

I have much the same outlook right now.

When I got sick I was fat, depressed and recently divorced. I was not given very good odds on surviving the sudden and catastrophic organ failure I did. In fact while I was in my coma and my organs were continuing to deteriorate, the doctors advised my brother to end life support.

...and so, when I get the transplants I need, and can live life again free of dialysis, paracentesis' and re-learning to walk , I certainly plain on living it.

I'm not walking into Heaven depressed and fat, I'm sliding sideways into hell on a motorcycle screaming in exultation. :D

 2   0  

Amen my brother! I love your mindset and attitude. It is crucial and will take you very far in life. Wishing you all the best and many years of happiness!

 2   0  

best of luck

 2   0  

Thank you!!

 12   0  

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?

 26   0  

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.

 11   0  

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!

 10   0  

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

 12   0  

What is your secret to remaining so positive?

 19   0  

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!

 4   0  

A real life Pollyanna. 😀 Your positivity is commendable, and contagious. Thank you. I like reading all of your responses here!

 4   0  

Thank you so much! I am more than happy to be open, honest, raw, and share my story. I think it's important to help people understand and raise awareness while also showing that it IS possible to overcome.

 3   0  

Well, you've certainly overcome more than most of us will ever be asked to. Thank you for sharing your story and spreading positivity. We certainly need more of that in the world!

 2   0  

Thank YOU so much! I really appreciate the kind, sweet words!

 8   0  

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

 25   0  

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.

 6   0  

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.

 10   0  

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!

 6   0  

Is there ever a time where you felt like giving up?

 12   0  

There was never a time I felt like giving up, in the sense of taking my life. However, there were times that I just stopped caring. I felt hopeless and didn't take care of myself the way I should have. Shortly after my second transplant, I discovered my father had been living a double life with a second family for over 15 years. This was simply too much to handle in addition to all my medical issues! I developed a dangerously carefree attitude. I began to abuse my prescription pain meds to numb the pain unaware of just how dangerous that was for me. I overdosed at the age of 27. This was one of many tremendous wake up calls for me.

 7   0  

What's your favorite movie? Why?

Have any plans for the weekend?

What's your opinion US political situation?

 6   0  

First question is a tough one! I'm a huge movie buff so it's hard to pick just ONE! I like all kinds of stuff, but I especially enjoy anything thought provoking that stays with me a few days after watching. I love all of Tarantino's work, so thrilling. My sister-in-law put me on to "Reservoir Dogs" which was just fantastic. I gotta say though, "Shawshank Redemption" is one of my all time favorites. So much deep symbolism. It also touched on so many important themes including race, friendship, loyalty, perseverance, strength, hope, and the power to overcome!

My best friend is hosting an event on Friday that I will be attending. The high school she went to and later went on to teach at is at risk of being shut down and so she has put together a fundraiser to raise as much money as possible. She has arranged for me to have a table setup in order to sell autographed copies of my memoir, hats, and tshirts. 50% of my sales will be donated to her cause. I also love to dance so I'm planning to get my ass on the dance floor with my walker and break it down a bit ;)

I usually tend to avoid political discussion, however I will say I am severely disturbed by how divided our nation is at the moment. I am extremely proud to be an American! I understand people having difference in views and opinions, and I also believe debating is healthy to a degree. However, I believe that since Donald Trump was in fact elected (although his rhetoric and controversial stances make me cringe) it is important that he be given a chance to lead us.

 6   0  

Who was your best nurse? And why!? RN here looking to improve practice!

 4   0  

My best nurse was a young woman by the name Erin, so much so that we became close friends and are still in contact to this day. Erin took care of me in a way that didn't make it feel like it was a job that she was hired to do. Although extremely knowledgeable and intelligent, her bedside manner was endearing, comforting, and gentle. I felt safe with her, and I knew she had my best interest at heart, always.

Smiling and listening to your patients goes a long way. Doctors may call the shots, but ultimately we spend the most time with you. A nurse that is not just attentive, but sweet, goes a very long way!

 3   0  

Exactly what I was thinking

 5   0  

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!

 8   0  

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.

 3   0  

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

 4   0  

In the end, he was the only thing capable of killing himself.

 2   0  

Deep! Touché

 5   0  

Please excuse me if what I ask has been asked already. 1. Have you had issues w the medications after all these transplants? My father had a kidney transplant and his medications completely messed w his immune system and led to his passing unfortunately. 2. What surgery were you most nervous/scared about?

 11   0  

No worries at all, ask away! First and foremost, I am so sorry to hear about the passing of your father. I can only imagine how difficult that must have been. But yes I did. In fact, I had many issues with my medications. The side effects the initial months after transplant were very rough. I developed steroid induced diabetes, my stomach was a wreck, headaches, dizziness, tremors, severe colds and infections. After four years, failure to comply with taking my anti rejection meds regularly and on time is what finally led to the rejection of my first heart. I just got too comfortable and began to neglect my strict regime. I missed a few doses and still felt fine which further led me to undermine the important role they played in keeping me alive. I went through hell after that to pay the price. I spent 7 months in the ICU awaiting a second heart, during which time my kidney's failed. I was then placed on dialysis for 2 years before receiving my kidney. I went down to 95lbs and almost lost my life because of my carelessness. This past November I celebrated 12 years since my second heart. My body has since adjusted to my many meds and so far so good. I certainly learned my lesson and don't take any chances with missing doses or taking them late anymore. To answer you second question, I was most scared about my first heart transplant. At the time, this idea was completely foreign to me and the idea of someone else's heart beating in my chest seemed so absurd. I was only 16 and told my mother there was no way I would undergo such a crazy procedure. I didn't even know such a thing was possible. The few moments before surgery I experienced a fear like no other. I had no idea what I was in for, or if I would even wake up for that matter!

 4   0  

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

 11   0  

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.

 5   0  

are you a cat?

 6   0  

Hahaha, this is great! I sure as hell hope not. I'm not a big fan of cats at all. I'm actually a dog lover. Ironically though, a liver specialist asked me that very same question in 2002. He just didn't know how I managed to keep overcoming the obstacles that came my way. That same concept is also the basis and premise behind the title of my memoir "1 Man, 3 Hearts, 9 Lives," so you're definitely on track with your question.

 5   0  

Mr. Hemingway, is that you?!

 5   0  

"The world breaks everyone, and afterward, some are strong at the broken places!" :)

 4   0  

What do you want to do in life?

 14   0  

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!"

 5   0  

How did this all happen to you?

 2   0  

I fell sick at age six, collapsing at 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.

 5   0  

What are your hobbies?

 10   0  

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.

 3   0  

Serious question

When was the last time you hugged your mom?

 7   0  

Around 6pm yesterday evening. And funny you ask...she was on her way out, and I was busy working on a new blog post. She said goodbye, and I caught myself being dismissive. I called her back into my room, gave her a hug & a kiss, and told her I loved her!

 3   0  

Good.

Serious question.

How many hours of surgery did you have to go through to get to here, and how much do you think it's cost?

(I'm Canadian, I don't often see how much this actually costs)

 3   0  

Quite honestly it's so much on both ends it's hard to say exactly; however I can give you a round about estimation. Each of my heart transplants took about 8 hours give or take, my kidney transplant took about 6. My lung repair was 4 hours, my tracheostomy was about 90 minutes. That's roughly 24 hours right there alone, not including weekly biopsies for the first 5 months post transplant, routine trach changes every three months, countless procedures during my child hood. I've probably spent about a week of my life under general anesthesia overall at the least.

Heart transplants cost roughly $275,000, kidney transplants about $80,000, all this does not include hospital admission, medical equipment, treatment, etc. Everything adds up and in my case it's an absurd amount. I'll say it over and over, I am so blessed.

 3   0  

Serious question

When was the last time you hugged your mom?

 5   0  

We also text each other "goodnight" and "I love you" every night before bed!

 5   0  
 3   0  

In many ways I do, but not until more recently. As I mentioned in another answer, he's one of my favorites and someone whose work I've always admired. It feels a bit pompous of me to put myself on the same level, but at the same time I can't help but relate.

 4   0  

Do you think your mom being a physician had any pull on you getting so many transplants? I would assume after you were "careless" with the first one, it would be ethically wrong to give you another, considering how hard it is to get one in the first place. (I say careless because I read your prior comment explaining and I feel you were a young kid that made a mistake, so unintentionally careless)

 3   0  

The thought has crossed my mind, but I highly doubt that possible. To be totally honest, I'm not exactly sure why I was given a second chance! I think I was too scared to ask, because I knew I was rejecting due to my own mistakes. My meds and care were under direct supervision by my mother from the age of six all the way up until I left for college. That was my first time being on my own and my independence just got the best of me. I also didn't admit to skipping doses until a few months into my rejection. Again I was terrified, and I just didn't want to die.

 4   0  

Oh my God... Your story is amazing, but can I ask what I'm looking at in picture 3?

 3   0  

Thank you so much, it really means a lot! Picture 3 is showing me shortly after a procedure I had done called a mechanical pleuradesis, which was performed to repair several pneumothorax in my collapsed left lung.

 3   0  

So is that your pleural cavity outside of your chest? That red, bandaged mass?

 3   0  

No, that is just a heavy duty pressure bandage soaked in blood. The bleeding was very intense the first couple days, the pain unbearable. I also had two chest tubes in place for draining.

 10   0  

I've heard that many heart transplant patients begin to gain weird characteristics from the donor after getting the new heart (liking spicy food after hating it your whole life, a new obsession for something, personality, etc.).

Have you ever had such an experience? Do you ever feel like the donor is still around?

 19   0  

I had heard many similar urban legends myself. I think that's why I was so freaked out about being transplanted in the first place. After my first transplant, I had an abnormal craving for sweets which I never had prior to my surgery. Only to later find out that it was a side effect of one of my new meds. I must say, in the last 17 years since transplant, nothing stands out that would lead me to believe I've taken on any characteristics of my donors. I guess my story would be much cooler if I did tho, ha! And although I pray for the souls of my donors regularly and give thanks for their generous gift of life, I'm also very happy not to feel their presence. No offense to them. I just don't like mediums or anything involving contacting the dead. I mean, I don't mind spirits being around, just don't start messing with my lights or randomly knocking shit over in my room cause I'll go running for the hills haha!

 17   0  

I got a kidney from my sister and instantly I HATED the taste of coffee and suddenly liked dark chocolate and cheese... which were her favourite things. Once the transplant failed I went back to loving coffee and had no cavings for the other things. It was weird.

 4   0  

Get outta here! That's pretty nuts. Everyone is different I suppose. Any characteristics like that I suppose I could handle ;)

 5   0  

Yeah it wasn't too bad! Our personalities are really similar so I couldn't tell if I got her traits.

But damn OP that transplant surgery sucked, I can't imagine what you've been through :(

 3   0  

It has definitely been a rough road. But I'm still here, and because of that I wouldn't forgo any of the suffering that has allowed me to continue my life and has brought me to this point!

 5   0  

Why do doctors want you alive so bad?

 3   0  

At the risk of sounding prideful, I just think I was fortunate to come across doctors who really took a liking to me and cared about my well being. I like to think myself a genuinely kind-hearted person, although clearly I have my flaws and am certainly by no stretch perfect. I am very lucky to have landed in the hands of extraordinary care givers. I owe everything to them!

 3   0  

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

 7   0  

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.

 3   0  

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.

 8   0  

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!

 3   0  

My cousin recently got a liver transplant and it's been a struggle to be able to go to some public spaces for fear of getting her sick. How do you deal with cold and flu season while taking immunosuppressants? Are there any activities you have had to modify or eliminate completely due to a lower functioning immune system?

 3   0  

Congrats to your cousin on her transplant. I hope she is coping well and I wish her all the best. Immunosuppression can be quite challenging! For me, I found the toughest periods to be directly after transplant. While I am still very careful, the further out I got the easier it was for me to manage. Hand washing is very important always, but especially during cold & flu season. By now, friends and family know not to come around me or make contact if they are sick. I avoid kissing, hugs, and hand shaking when I can. As difficult as it is, I also try to avoid horsing around with little ones because they are infested with germs. I change my sheets often, and I'm always wiping down surfaces with disinfectant. I always carry pocket sized sanitizer. I wear a surgical mask when necessary or simply ask anyone who may be sick to wear one around me (especially in tight quarters like a car).

Again, directly after transplants I had to avoid crowds altogether. This included, the movies, the mall, amusement parks etc. Anything I avoid now is due to muscle weakness and not necessarily related to my immunosuppression. I do still however avoid sick people at all costs.

If your cousin was transplanted recently, encourage her to hang in there and just be patient. In time her immune system should level out and adjust to be more manageable allowing her to do more activities.

 3   0  

I notice you don't use a speaking valve on your trach, but you are occluding it by hand in one of the pics. Any reason why you don't use a valve?

I also wonder if you could talk more about your experience with the trach in general, especially the first few days after you got it, if you remember them.

 3   0  

For me personally, I find that my breathing is much easier without the use of a speaking valve. It really comes down to a comfort thing. I get winded easily, and so I find it easier to catch my breath without the speaking valve. I do however, work with a speech therapist twice a week to build my vocal endurance and respiratory function. I do wear a red plug during our sessions for my breathing exercises. I also wear my red plug for hospital visits, during air travel, or in highly congested areas, in order to limit germs entering my airway. My therapists have expressed their concerns regarding my being at a greater risk for infection with an open valve; however, I am strict with hand washing & I always carry sanitizer. Being that my mother is a physician, she also helps me to keep my stoma site clean with regular trach care and cleansing.

The first few days after being trached were particularly rough. Similar to transplant this was unknown territory for me, and I had no idea what to expect. My only exposure to trachs were the creepy cigarette ad commercials I saw on TV. I distinctly remember my first question to my surgeon being, "am I going to sound like a robot after this?" Now I must say, waking up after surgery, I was much more comfortable than I had anticipated being. In the weeks prior to that, I was intubated with a ventilator tube jammed down my throat; therefore no longer having that was a huge relief. The challenge arrived when it came time to ween me off the vent. I had become so vent dependent that breathing on my own was scary. I think I lasted about 15 minutes off the vent the first time around before begging to be reconnected. Being suctioned was a trip also. Feeling catheters slither around my just was just so weird and the amount of blood directly after surgery totally freaked me out. As time went on, I adjusted slowly. Passing my speech/swallow test was the greatest feeling ever. Water and apple sauce never tasted so good, haha!

 3   0  

I'd love/hate to have you as an admission. How do doctors who don't know your history react when you tell them?

 2   0  

I'd have to say the most common response is shock, awe, and disbelief, behind a mask of professional demeanor. They usually do their best to hold it together, but by now I can usually tell when everything inside a doc or nurse is screaming, "Holy Shit!" This is precisely why I stick to hospitals that are familiar with my case and history. It scares me when I sense doctors or nurses don't know the first thing to do with someone as complex as myself.

 3   0  

Is the disease genetic? If so, what are your thoughts on having kids?

You also mentioned feeling a little guilty at times about how many transplants you were able to receive. Have you even thought about stopping, about letting the organs go to another person, simply giving up?

 3   0  

Yes, my disease is genetic in nature, specifically my DESMIN gene is affected. I always dreamed of having kids, I always thought I would grow up to have kids of my own. I am confident I'd make a wonderful father. I have since rethought those hopes and dreams. I don't know what the future holds, but if I do end up having kids it would most likely be through adoption. In the meantime I receive lots of love from my niece and nephews and that is plenty to hold me over.

My guilt does not override my will to survive. Generally speaking, I think it is human nature to survive by any means necessary. Giving up is not an option for me, especially after coming so far. Instead I choose to counter my feelings of guilt by giving back in any way that I can. Such as supporting anyone facing a difficult life situation themselves, whatever that may be.

 3   0  

Thanks for these insightful answers!

 2   0  

You're very welcome, I appreciate the questions!

 3   0  

Do you have a different outlook on life now? Ie. Do you value life more or notice things you didnt appreciate enough before?

 5   0  

Absolutely without question! My entire perspective is forever changed. Even something as annoying as the urge to pee, is something I have grown to be grateful for after spending two years on dialysis. I was blessed to be able to see three of my siblings get married. I treasure time with my niece and nephews. Before I was trached, I didn't know if I'd ever be able to eat again, or if I'd be stuck with a feeding tube for rest of my life. Because of that I now look forward to and enjoy every single meal. Scenery, sunsets, nice weather, all living things! I can't even bring myself to kill a spider anymore (and I strongly dislike spiders.) I say, "I love you" to people I care about without hesitation. I jump at opportunities to enjoy myself. I could go on and on....

My life and everyone/everything in it is so precious to me. In a way, I'm thankful for my illness because it has brought about such a heightened sense of awareness and appreciation in me. Too often I see people go through life on autopilot-failing to appreciate what they have until it's gone.

 3   0  

Do you ever do fucked up, bitter shit just so someone will say, "Dude, have a heart!" ?

 3   0  

Hahaha, nah! I'm not spiteful like that. However, I have come across that phrase before and a fair share of other puns..."put some heart into it," "do you love you with all your heart," etc.

 3   0  

What are your favorite subreddits?

 2   0  

I'm relatively new to Reddit and so I'm still browsing around. My brother put me on. He's a tech genius and huge gamer. So far I'm really loving the community and the wealth of information. I'm quickly realizing you can pretty much find any topic on here. The more casual AMAs and motivational/health related subreddits are what I've really explored so far! I'm open to suggestions if you have any you can recommend.

 3   0  

Which charities should more people support?

 2   0  

I think this answer is different for everyone. I believe it's important that people support charities and causes that they believe in or feel some sort of connection too. Personally I don't think charities should be in competition or that one holds more importance than the next. If something affects you in a unique way or a particular cause is near & dear to your heart, then go with that! :)

 3   0  

How do you get your news everyday?

 2   0  

Thanks to technology I check BBC, CNN, as well as other local news websites on my tablet in the mornings and periodically throughout the day. I also listen to 1010 Wins when I'm in the car, once the news starts getting reprieve however, that's when I switch over to music. Ironically, the Reddit homepage has also been a great source for breaking news and current hot topic stories.

 3   0  

Do you have a helper animal? If so which kind?

 2   0  

No, I don't at the moment! Although my uncle has suggested I look into getting a service dog and so it is now something I am strongly considering!

 3   0  

Have you thought about staring in a TLC or Discovery Health Channel show?

 2   0  

This has actually been mentioned to me by several family members, friends, and people who come across my story in general. And the answer is yes: I would love to should such an opportunity arise. I don't have any contacts in that industry however. Perhaps I should investigate further.

 3   0  

What does body rejection feel like? Were you able to feel any of the different organs post transplant? Which was the hardest procedure to recover from?

 2   0  

Rejection can be difficult to detect untila biopsy is performed because symptoms are very similar to that of the flu or common cold: fever, chills, body aches, nausea, cough, shortness of breath, swelling of the ankles, and general discomfort.

I was able to "feel" my new hearts after transplant. Especially after the first. The heart I was born with was so weak that after transplant I was very aware of my new strong healthy heart thumping away in my chest. It was beating so hard that my left shoulder would twitch with each beat. That was very weird for me, let me tell you!

The hardest procedure to recover from was by far the heart transplant. The surgery alone was extremely complex and recovery time was approximately 6 months. It takes a while for the body to accept the new heart and adjust. Not to mention your chest must heal after being cracked open down the middle and all the new meds are accompanied by harsh side effects. In the end, I made it though!

 4   0  

Are you Frank Gallagher from Shameless?

 3   0  

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! :)

 3   0  

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

 3   0  

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

 3   0  

Hey, how bad was the pain from the liver stones? I had my gallbladder out and had biliary colic and it was awful, that was probably one of your easier things to deal with.

 2   0  

It was dreadful! It started out like a really bad stomach cramp. I was actually at the barbershop when it became full throttle. My dad picked me up half way through getting my cut and rushed my to the emergency room. After that, the pain came in waves. I was given copious amounts of morphine and nothing seemed to help. My gallbladder was removed as well, and a stent was placed in my liver along with a drainage bag at my side for all the excess bile. It took approximately 6 months to clear up before the stent was finally removed.

 3   0  

Shit, I thought mine was bad, I just had the gallbladder removed and then they did a scope to remove some sludge in the bile duct, best of luck to you buddy, you've got a much better attitude than I would have.

 2   0  

You did have it bad. If it's one thing I always say, if something is a big deal to YOU, then that's all that matters. It's all relative man. What I have been through in no way should take away from the pain and suffering you yourself experienced. I'm happy you got through it though, and I continue to wish you all the best. I truly appreciate your kind words!

 2   0  

New Jersey, I was born there and spent a few years. How do you think where you lived affected your health and/or ability to receive care?

 8   0  

I think living in New Jersey played a huge advantage for my health and ability to receive care. I live just over the George Washington Bridge allowing me direct & quick access to some of the top medical facilities in the country located in NYC. My care was certainly among the best and I'm thankful for that.

 2   0  

Hi there!

What immunosuppressants are you currently on? I'm a liver transplant recipient 7 years out.

How long were you on the UNOS list? Were all your txs single organ transplants or did you have any multi organ txs?

 3   0  

Hi, thanks so much for your question! I am currently on cyclosporine/neoral and cellcept! I was on prednisone as well but was eventually able to be weened off. Thank God, I hated that drug, haha. So many side effects.

I waited only just 5 days for my first heart which I hear is almost unheard of. I got VERY lucky to say the least. Failing to comply with taking my medication regularly and on time caused me to reject my first heart. I was then placed on the list to be retransplanted and waited 7 months in the ICU. During that time, kidneys failed. It was absolutely awful. Let's just say I certainly learned my lesson. All of my txs were single organ. I was supposed to get my heart and kidneys simultaneously the second time around, but I was not able to receive the kidney due to antibodies and doctors also thought my body was too weak to survive the surgery. Therefore,'I spent two years on dialysis awaiting a kidney.

 6   0  

I didn't like the Prednisone either. Made me feel nauseated all the time. I waited 2 years for a liver, my aunt donated to me. She would've done so sooner, but my docs were trying it as a last resort. Basically they planned for it to fail so I'd go to the top of the list. But when they got in there they realized the damage to my hepatic artery wasn't as bad as previously thought, and the transplant was a success. Yay!

So far 7 years and no rejection at all. Have you had any episodes of rejection since your second heart and kidney transplants?

Which hospital did your transplants, or hospitals. Have you met the donor families of any of your organs? Do you want to?

 5   0  

Wow, that's such great news! I'm really happy to hear you've been doing so well all these years. Wishing you many many more years ahead.

All of my transplants were done at NY Presbyterian. The team, care, and staff there were simply incredible. It goes without saying, I owe my life to them!

I have not met the donor families of any of my organs. If that was something they were open to, I would absolutely love it. A very dear friend of mine, whom I met at the hospital and was transplanted around the same time that I was, recently met her donor family. They were able to listen to the heart beat in her chest and she describes it was one of the most powerful experiences of her life!

 2   0  

It was brought to my attention that the hyperlink in my description is not working due to too many spaces in the paragraph. Link posted below!

1 Man, 3 Hearts, 9 Lives

 2   0  

How's the power plant going? Is Smithers doing OK?

 2   0  

Mannn, we're just trying to pass this next inspection! Smithers is good, still loyal as hell. I just wish he'd come out already, he's not fooling any of us.

 2   0  

How different was your childhood compared to other kids ? Also do you have any pets ?

 3   0  

I had a relatively normal childhood. My only true limitation was that I couldn't participate in competitive sports for fear that I would over exert myself. This made me sad sometimes because a lot of my friends played sports and I wanted to be just one of the guys.

At the moment, I don't have any pets. My boxer, Brandi, passed away two years ago. Losing her was very tough on our family and we needed time before moving on. However, I think we are slowly becoming ready for another dog.

 2   0  

Do your x-rays look like this?

In all seriousness; how has that affected your overall health? Are you able to get around easily, or has it affected your ability to move/do stuff?

 2   0  

Hahahaha!! Something like that :)

Due to my muscle weakness my ability to get around easily, move, and do stuff is very limited. I experience substantial weakness in my legs, walking with the use of a walker but primarily using a wheelchair. I also recently became aware of significant weakness in my shoulders, hands, and feet, making everyday activities very challenging for me. I need assistance getting dressed and showering. I even need assistance standing from a seated position. I currently have a trach tube in my neck and I sleep with the assistance of a ventilator every night. I receive in home physical therapy treatment for muscle stretching and strengthening twice a week as well as weekly sessions with a speech therapist in order to build my vocal endurance and breathing.

 2   0  

What would it take to kill you? You seem very unkillable...

 2   0  

Honestly, I don't like to think about or consider death at this point in my life. Instead I choose to remain focused on what it takes to keep me ALIVE ;)

 5   0  

How many people do you think they could have saved if they let you go?

 3   0  

Well that depends...had they let me go before my first transplant then my guess is 3 people, afterwards, then my guess would be 2 people.

 0   0  

You believe in Jesus Christ?

 6   0  

Yes, I absolutely do! My faith is very strong, and I find great comfort in prayer. I respect the beliefs of all; however, what I have seen and been through over the course of my life leaves me without any doubts.

 6   0  

Sorry if this comes off as combative, but exactly what evidence lead you to the conclusion of believing in Jesus Christ as the descendant of God?

 6   0  

I don't find this combative at all. I've grown a very thick skin over the course of my life, and so I am not easily offended.

Religion has been instilled in me since a very young age. I attended a catholic grammar school and a catholic high school. I met Pope John Paul II at the age of 12 and received his blessing. Prayer was always instilled in my family, and we attended church regularly on Sundays. Now I must say, as I grew older certain concepts of Catholicism didn't resonate with me as much, but nonetheless my belief in Jesus Christ and God remained strong. I don't have evidence, I don't think anyone does. Hence why religion remains such a source of debate and controversy. It's a deep rooted feeling that I have well within in my soul! There have been so many signs throughout my life, too many to name. He has carried me this far, and I honestly believe I have a calling. My struggles in life are much greater than my understanding and I am simply at His mercy!