I am a Heart Transplant Recipient. Ask me anything

my 4 year old son has chd and is waiting for a heart. He went into cardiac arrest a week ago and just got his Berlin heart until a real organ donor comes along. Unfortunately he had a severe edema after the arrest and the procedure and we won't know if we will have our little boy back.

He's currently defied the neurologists by holding our hands, moving around, and trying to look for us. He's not exactly where he should be but it's positive. We on the other hand as parents are emotional wrecks.

Your story gives me hope and I wish you nothing but the best. Give your parents a hug for me. Can you share your wild transplant story? I would like to see if there are any parallels with our journey.

I would be more than happy to share my story with any and all who want to hear it.

I was born with a congential heart defect were i only had 3/4 chambers of the heart. At 8 weeks old i turned blue and was projectile vomitting. It took 3 open heart surguries and a pacemaker to get me well again. I had 4 more pacemakers until I was 14 and my body always ran super cold. Sitting a pool would turn my lips blue, I couldnt keep up with other kids, and I had less of an immune system. The thing was despite all these things. My parents never held me back from enjoying life. I was told to enjoy life to the fullest and that my condition was no reason to shelter me.

Shortly before I turned 14 though... things started to go south fast. My stomach started to swell with fluids and my heart was failing fast. It was growing in size and crushing my organs and killing my appetite. I was literally dying from the inside out. My spirit or will to live never faltered though. I wanted to live to the fullest of my ability.

When I was told I was getting a new heart... I was really scared at first... cried in the bathroom for hours because it was very scary. As time passed though I accepted that this was needed. Once I found out what would happen to me once I was post transplant though... I was excited at the possiblity to be normal. I actually couldn't wait and counted the days.

I was put on the list January 31st 2007 and got the call for the transplant 5 days later. The procedure took 12 hours and it was rough. I got the flu from my donor and I was in a coma for 10 day due to internal bleeding. When I finally came to... i was a literal zombie. Several days later I was able to function well enough and they removed the tube so I could talk (No food yet). The next day I was able to eat but my joy was short lived. My left lung collapsed and I was put back into surgery. I was in a coma for another 2 days and had to restart the process all over again.

When I was finally able to leave the hospital I was transferred to a step down house to recover. A week later I was able to go home for the first time in a literal month and a half. I was only able to stay for a weekend though. I was rehospitalized again due to rejection of the heart by my body and it took a week to get that back under control. This in and out of the hospital would continue until May of 2007. I was able to go back to school my final week of 8th grade, but it was only half day. I looked alot different due to my medication. I had an extremely chubby baby face due to a steroid I had to take to combat rejection. My friends did not recognize me at first. lol.

Now... I go for a short check up every 6 months, have blood work every 4 months, and have no restrictions except for two dietary restrictions. No raw meat like sushi and no grapefruit or anything with grapefruit in it.

Tell your boy to hang in there. There is hope for the future. Look for a support group for him. There are lots of transplant support groups all over the world. The help you need or want is there with people who understand your plight. Give him a hug and be there for him.

Why grapefuit? And did your face go back to normal?

For the grapefruit, OP is probably is on a medication like statins that has a drug interaction with grapefruit, like warfarin and vitamin K.

Prograf and rapamune to be prcise

Is grapefruit actually that dangerous yeah?

It just interferes with the metabolism of the anti rejection drugs for the new heart. There's nothing inherently "dangerous" about grapefruit itself. All transplant recipients are told to avoid grapefruit.

Hit the nail on the head

Not OP, but my son was 4 when he had his transplant. He was born with dilated cardiomyopathy and was treated for that until he rapidly became ill. He was treated for pneumonia but became progressively worse until his heart stopped twice.

He was put on ECMO for 5 days, then a Berlin heart. We were in the children's hospital for almost three months before a heart became available. Along the way there were a number of problems, such as bleeding in the brain, clots which required multiple surgeries.

He was able to leave the hospital about two weeks after transplant. Those two weeks were very difficult as he had to recover and learn how to do many things, such as walk again. He had been in a diaper for months.

When he started waking up for the first time after transplant we couldn't figure out what he was saying. The curtains in the CICU had circles on them and he thought they were bubbles. When we figured that out that was the first time we felt some honest relief that he was coming back to us.

That was four years ago, he was hospitalized a few times earlier on for general illness and fevers (his underlying genetic condition causes him to be neutropenic so he is susceptible to infections). A year and a half half out he was hospitalized because he was sick and we couldn't figure out why. His primary immunosuppression medication stopped working as it should for him and was making him sick so it was changed.

He is now a healthy kid and on the fewest number of medications that he has ever been on. We are on as complet lockdown as possible to prevent him getting sick, but this is actually the third time we have had to do this. It is just harder on him now because he is so social. His best friend calls several times a week and they talk while playing games together.

One of the biggest differences for children with transplants is that they are still growing and the medicine will change a lot more in the early years than later in life.

You and your family are in my thoughts. I wish you all the best.

I wish your warrior of the heart the best in his future. I love swapping stories of transplants with fellow recipients.

Hi, I have some questions. First of all, feel free not to answer the hard questions. I understand those things aren't easy to discuss.

1. Do you have any feeling your new heart is not yours? Like a feeling of a foreign object.
2. Some people believe a heart is where the soul is located. Did you observed any changes of your consciousness, memories or preferences?
3. (Hard question) A life expectancy after a heart transplant is quite short. Do you really live your life to the fullest? Is there something meaningful what will remain after you?
4. (Hard question) Healthy people take it for granted that they will wake up the next day. You're probably more aware of your own mortality than most of us. How do you cope with that? And did it change your point of view on life itself and the values that are really important?

I am sorry for all those grammatical mistakes I probably made. English is not my native language.

1. No. it feels like part of my body physically and mentally. My immune system doesnt recognize my new heart though so... Im on immune suppression medication.

2. I gained a few quirks like a sweet tooth that I never had before.

3. I try my best to live to the fullest every day. For example... I love horse back riding and go out riding every friday for a few hours every time.

4. Its... something that sits in the back of my mind all the time. My line of thinking is that I now have to live life for two people, myself and my donor. I was born with my health problems so... I cope better than someone who got slapped with this burden mid life but sometimes it can be hard to deal with. When people claim I am handicapped, I remind them that I am not because the only restricitions I have are medication and I can't eat raw sushi or grapefruit. Otherwise my lifestyle is no different than anyone else and if you saw me in a crowd... you would never know I had any issues. However... I have a motto I live by and its a direct quote from the first Pokemon movie of all things.

"The circumstances of one's birth is irrrelevant, its what you do with the gift of life that determines who you are." ~ Mewtwo.

Fuck grapefruit. Seriously. Pure ass.

I said the same thing... but it also includes anything that has grapefruit in it. Examples include Sunny D and Mountain Dew

Have you been introduced to the teachings of the Latter Day Saints? Kidding.

Well, sorry that’s a blocker. Probably not what you want to hear but there’s still a galaxy of caffeine drinks out there.

Actually I have. I also had to deal with a few transplant haters in my time. Been called a heartless spawn a of satan a few times.

By those guys? Lame. The joke was they don’t drink alcohol or caffeine.

Well, fuck whomever. There are people who would deny you air out of bigotry. Some even think they’re going to heaven...

The person who called me that was a gypsy. (No offense to any out there). Te latter day saints guys were chill though.

That mewtwo quote got tears in my eyes.

Never truly understood that line until I was older.

Does the fact your immune system is supressed mean you can get sick way easier? Did they expect that to happen? Or it just so happened your body rejected this heart

Yes. I can get sick alot easier if I am not careful. COVID no fun. The rejection was expected thus the anti-rejection medication. Its not a matter of if you get meds... its a matter of how much you will need. At my peak... I was taking 47 pills a day. Now... 17

Crazy story. Glad you are ok

Thank you. Appreciate it.

Do you have some cool scars?

Yes I do. It goes from the base of my neck down to my belly button and T's off at the bottom.

What part was most painful for you?

The most painful thing was between getting the two catheters removed and any time I had to cough.

I had one catheter in my manhood for waste removal and one in my arm that traveled through the artery in my right arm all the way to my heart. That one was used for blood work and direct medicine administration. THAT WAS NOT A FUN DAY LET ME TELL YOU!!! THOSE THINGS HURT ON SO MANY LEVELS!!! I told my nurses that for doing that to me... they owed me a banana split. They did not disappoint. They had one in front of me an hour later.

Pillow hugs helped ease the pain of a cough, but it was like having a hot iron pressed to your incision every time a cough struck.

I have had quadruple bypass. They put my big needle in my neck instead of my arm, and it did hurt, as did the catheter, and the coughing... but I found the chest tube removal most painful.

So you never have any weird pains now, or weird feeling inside your chest? I had my surgery last November, and I do all the time.

That pain goes away over time. It takes a long time to adjust. You may feel a twinge from an angry half dead nerve ending from time to time, but... thats it. You also gotta keep in mind... I had a total of 14 surgical procedures on my chest before transplant. I have alot of scar tissue and what others feel as pain or strange is normal for me.

I can’t imagine another procedure, much less 14 more... how are you not crippled by anxiety and fear? Have you been in a fistfight since then? Did you panic? Has anyone said your scar was cool?

I am not governed by fear or anxiety because of what I tell myself all the time "I am the strongest and toughest person I know. Who else do you know that can go 14 rounds with Death and win every time?" Its a real confidence booster.

Ive never been in a fist fight ever.

I've never panicked at a surgery.

Many people have told me that my scars are cool. My fiance tells me my scars are sexy. (Another confidence booster)

Do you know who gave you your heart?

I tried to reach out to the donor family, but got no response. That was the hardest letter I ever wrote. Tears the entire time.

Thank you for sharing that, I have no doubt that would have been so incredibly difficult to put into words.

It was a case of "How on earth do you say thank for something like this? Someone literally just passed away mere hours before I got my transplant." I cant just casually say "Oh hey thanks for your dead family member's heart!" like I was asking for a cup of sugar. It was... humbling to say the least.

I get it hey, it was a terribly traumatic thing for one family to go through.

You’re just an incredible person for wanting to reach out to them, and maybe in time that will happen - but it will happen in its own time.

I hope you stay safe and healthy, I’m rooting for you

Thank you for your interest and kind words.

May I ask what the defect was? Something like HLHS?

A great question. I was born with a congenital heart defect where I was missing my left ventrical chamber. I underwent 3 open heart surgeries at 8 weeks old to fix that and got a pacemaker. Had 4 pacemakers over the course of 14 years and then my heart started to swell from heart failure and I was retaining fluid in my belly. When the doctors removed my heart... it was the size of a cantalope... a heart is supposed to be the size of your fist.

I was literally being crushed and starved by my own failing heart.

When given the option to die I would've taken it, so...why? What makes life worth living, to you, what are the things that I am (more than likely) taking for granted?

I was 14 at the time of my transplant and I was too stuborn to give up to death. I find my life worth living because of the people I share my life with. My family who supported me, My friends who looked out for me. My now fiance who loves me despite the fact I need a little extra TLC from time to time. My elementary school created a website so fellow students could send me words of encouragement every day.

I knew I could of died from the experience (20% chance of death), but when my doctors told me that I was no longer going to need a pacemaker and I could be like every other person afterwards... I told myself I would be a fool not to take that opportunity. Post transplant... I now compete and I am a gold medalist in the US Transplant Games, I ride horses weekly, I am engaged to the love of my life, I am a teacher who gets to mold young minds, I got to go to Australia on a Make-a-Wish trip and meet Steve Irwin's family and go to Australia Zoo, and... once the time comes... I will be able to father my own children and experience joy with them.

I literally shook hands with Terri, Bob, Bindi, and Robert Irwin while in the Crocoseum at Australia Zoo. Oh... I also got to hand feed their Asian Elephants.

Good on you! I definitely take all of that for granted. I wish you the best in all future endeavors.

Thank you.

Is there anything you’d like to share about your experience that you feel like you don’t get to share enough? Such as infrequently asked questions or fun facts?

Thank you for sharing. I just read the entire post and I’m really moved and would like to hear anything you’d like to share!

Hmmm... I guess the most underrated thing I don't talk about was the initial change after transplant. Before... my body always ran cool and slow. 100 beats a minute at max after running, Temperature was a few degrees colder, Couldn't be in a pool or bath for that matteer for more than 10 minutes without my lips turning blue. My skin was super pale all the time.

Right after the tranplant however... the nurses had to keep my room at 50 degrees farenheit and no blankets what so ever because I felt so hot. My poor mother suffered for weeks until I became more acclimated to how the human body was supposed to feel. She had to wear a heavy winter coat in the room at all times. My skin turned flush red because the blood flow doubled. My heart felt like a powerful freight train. Honestly I would compare my transplant to an Anime protagonist style transformation. It was exhilarating. I never felt so happy in all my life.

Do you feel any different? Like, do you feel something off in your chest?

After transplant I felt warmth that I never felt before. My body used to run really cold, but now Im used to it. As far as my chest... no. everything feels normal.

I bet all that medical treatment was expensive. I read that people can get bankrupt because of the bills. Have insurance company paid for all? Our perhaps you're rich enough. I'm not from the US and I understand that us medical system is advanced but very expensive. Would you please tell what was your situation?

Insurance covered everything for me. My dad's insurance was epic on so many levels. For those curious... The transplant itself with nothing else added to the bill was well over $1 million.

P.S. If any members of Congress are looking at this... Take a good look at that price. That shouldn't be the price of saving a person's life. Seriously... $1,000,000 just to keep me from dying and living a "normal life". That price tag should be a zero. There is no price on a human life. I dare you to walk a mile in my shoes or the shoes of any transplant recipient and I guarentee you will be singing a different tune.

My sister was a heart transplant recipient so I know how hard it is on you. I just hope you're taking care of yourself. And I'm just curious how many meds do you have to take?

Being that I now tell myself I have to live for two people. I do everything in my power to stay on top of my health.

I take 8 different kinds of medication twice a day. The number of pills is 17 and that includes a regular men's multivitamin for good measure. At my prime of pill popping, I was dowing 40+ pills a day at 4 seperate times.

Yea I think my sister was taking that amount at first but she doesn't anymore. She actually died a few days ago. So I do ask do try your best to stay healthy. I know with some of the meds you probably take kinda make it harder to do so.

My condolences for your loss and prayers and peace to your family. (Internet hug and positive vibes). My meds actually don't affect my health outside of maintenance at this point.

No Grapefruit though... big no no for me.

Yea she also wasn't allowed it which is ironic because she liked grapefruit with sugar. For her she had to take a lot of meds. It actually made her sick sadly.

Sometimes the meds do that. Especially if there is bad chemistry between the medications. I can't take any pain killers outside of Tylenol because of this.

Oh ok that makes a lot of sense I didn't know that thank you for informing me of this.

My pleasure. There is no greater joy for me than sharing my transplant experience.

Would you want to meet your donor to thank them in the next life?

If the next life does exist... I would actively search this person out for all eternity.

Based on that response, I'm just gonna say if you watch Anime, check out Angel Beats. It's a bit dated and tropey, but I think your firsthand experience would mean you'd enjoy the concept.

I'm sorry that I kind of spoiled part of it with this suggestion though haha.

Spoilers only dull the effects of a show not seen. You can't completely ruin what you never saw. I will add this to my list of shows to watch.

How long did it take from the time you got on the recipient list until you received a transplant?

5 days. I was put on the list January 31st and got the transplant 5 days later. It was Superbowl Sunday. That wait time is unheard of and I count my lucky stars I got it so fast. I was prepared to stay for literal months.

So who won the superbowl that year?

It was the Bears vs the Colts. Colts won that year. My dad and I got to watch the game together before I went into surgery. We had a bet and I won because I sided with the Colts while he sided with the bears. My dad had to shave his mustache since he lost.

Now... we have a wager every year on the superbowl to celebrate my second chance at life.

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Super Bowl Sunday? There’s a good chance it was someone affected by a drunk driver. I’m not being facetious; we did see an anecdotal correlation in donors between holidays associated with lots of drinking and even bad weather. Many donors have suffered traumatic brain injuries after car or motorcycle accidents, which are more common in those scenarios.

It may be the case, but... I'll never know for certain. funny thing is... I can't stand alcohol outside of fruit drinks like pina colada. I only have them 1-2x a year though.

What was the best/worst food you’ve had during that time? Anything from family members that stopped by?

While in ICU my family brought me a banana split. I was the only patient in the hospital who ever got one of those while in the ICU wing. Otherwise... my favorite thing to eat while in recovery was turkey sandwiches with honey glazed over it. Also... due to transplant. My appetite grew to the point where the nurses literally put a sign on my door that said "Enter with food... if you dare."

Worst food was the carton of sour milk I got with my sandwich. Pissed me off because I was looking forward to that.

What if any, kind of restrictions do you have?

The only restriction I have is raw food like sushi. Otherwise if I can physically do it... I can. For example... i ride horses weekly. There are precautions I have to take though like wearing sunscreen is imperitive because I am at risk for skin cancer.

My son is a heart warrior.

Where did you have your procedure?

Children's Memorial Hospital in Chicago before it was changed to Lurie Hospital of Chicago. Its the #1 transplant hub for the entire USA.

Is your heart rate different now?

Nope

Interesting, thanks!

That being said... my blood pressure is different. I can only measure it on my right arm due to having something called a subclavian flap. It gives you a really messed up reading on the left arm for blood pressure.

Right before your transplant and the tumultuous year following, what comforted you the most? When people are ill, I feel like just saying “get well soon” or “I’m sure you’ll be fine” isn’t often enough. What did you find to be most encouraging and/or what would you tell people in similar situations? Thank you!

Well... I actually scorned any sort of "get well soon's". They were hollow in my eyes because I heard them often enough that if I got half a penny every time I got that... I would have been able to buy the entire city of Dubai, own Microsoft, and fund the next 3 sets of moon missions (extreme exaggerations). Instead... I would recommend you ask questions instead of saying get well soon. It shows active participation and interest in the events. It also gives the person who is recovering a chance to participate with more than a thank you.

Example: instead of get well soon or I hope you feel better as a lead... ask "How is your recovery going?" or "Are you feeling any better now than you did before?" before starting casual conversations. End the conversation before you leave with "It looks like your doing well. Keep up the good work and let me know if you need anything" or "It was good to see you doing so well. Keep up the good work and can't wait to see you out of that bed."

It does wonders for a patients mental health even if they aren't doing well. Shallow responses make us salty.

What got me through all of this was several things:

1. My family. My mom lived in the hospital with me, my dad, brother, and grandparents visited me ever second they could. My dad took time off to watch the superbowl with me the day I had my transplant. It was the Bears vs the Colts. If the Colts won... my dad had to shave his mustache and if the Bears won... I had to wear a bears jersey for a week with a sign on it that said "Dad rules". I won that bet.
2. Runescape. That game kept me sane while I was bound to a hospital bed with no visitors. Its amazing how much a game that requires mass grinding can keep you focused and sane. Heck... I could play and listen to everything the doctors/nurses told me word for word. It blew their minds.
3. Casual conversation. Don't coddle me. Talk to me, give me a hug, tell me whats new in your life. My grandfather even snuck a handful of snow into the hospital so I could feel the touch of winter while recovering. #bestgrandpaever
4. The fact that once I was healed... I would know energy that I never thought possible. It was Anime protagonist levels of change.
5. My school mates. My mother set up a Caringbridge.com page to communicate with the outside world. I left a post every day with a joke of the day and my friends, family, and school mates would respond. All the jokes were extremely kid friendly and corny, but... it kept me sane.

Wow thank you for your detailed responses! I really appreciate it.

I’ll definitely be keeping your advice in mind when speaking to friends/family battling illness. I used to not want to bring up the illness bc I thought they might be sick of speaking about it but a kind question never hurts and at least gives them the chance to answer or deflect.

Your support system sounds amazing (the snow story is especially sweet) and I’m happy to have read a challenging experience w a happy ending by a stranger on the internet. Thank you again for sharing and wishing you the best of luck and health. (Keep up the good work! ;) )

Your welcome. I see my story as a chance to bring hope to others.

How did you feel knowing that you were getting a heart surgery?

At first... terrified. i hid in the bathroom for 2 hours and cried. Once the benefits were laid out for me. I looked forward and bragged about it to my friends.

Thanks for doing this AMA, though it's probably over now I really appreciate your detailed and generally super-interesting answers. I had cardiac Sarcoidosis last year and heart failure, at 47 years old - has changed my life to say the least. Waiting now to see how much recovery I get (I've gone from 8% EF to about 25%) but it's looking like my transplant will be years away if ever. Interestingly, I can't tell if my career is over or what I want to do next.

Definitely agree with you on public health care, I'm a US immigrant to Canada (now a dual citizen) and my healthcare / hospital quality was as good as anything I saw my parents go through in Chicago - except I only paid for parking and monthly medication co-pay for my weeks of care.

If you're still taking questions, I'd be curious to know what difference the fact that you were 14 had in recovery and adaptation and rehab, i.e. how much faster were you than average transplant recipients - if there's even a way to gauge?

As long as questions flow... i will answer.

I was actually slower than my support group's average due to complications during recovery. Hospital time was 2 months in and out and rehab was about 2 years. Some of my fellow recipients were home in 2 weeks post transplant. Of course... those individuals were liver recipients.

Well thanks very much for continuing. How long is 'normal' (i.e. average I guess) rehab? Like how many months would you expect to spend doing specific exercises I mean, not only post-surgery recovery. I did read about your current check-in and medication routines, above.

I was in cardiac rehab for 6 months at a fitness center. After that... it was all about staying active and constant regulation of my body. I do horseback riding every week as a "test" to guage my physical health. You would be surprised at how much energy you have to spend and exercise there is in sitting on a horse. It also helps maintain good sense of balance.

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This people! This is why I did this AMA! Not to make myself look badass, but to bring hope to others.

Never apologize for your soppy post. We may not be siblings in the transplant world, but we are warriors of hospital rooms and good health. There is kinship in that fact. Take pride in the fact you were in the hospital and beat a medical problem. Its not a point of shame, but one of pride.

Ask yourself this every day when you wake up. "How many people do I know who can go through what I have been through and still smile?" It put things in perspective. I also tell myself "I am the strongest and toughest person I know. Who else do you know that can go a few rounds with Death and win every time?" "If my life is cut short... so be it. I don't fear what I don't know will happen. I have fellow recipents who are 30 years plus on the same transplant and they have raised families of their own. Granted they were liver and kidney, but that doesn't matter. The fact remains that there is hope and a chance. Don't be afraid of what might happen. Be afraid of not having the chance to try and we all have that.

(P.S.) Trust me... Teaching is cool and all, but the politics behind it and the sub par pay are so for the birds. You may not become a teacher, but there are other ways you can participate and help young minds.

Supposedly there are reports that people who get tissues transplanted into their body sometimes might recall memories they believe belonged to the original owner/ became like them in some way (I.e now likes a food the donor also liked). This true or am I spouting bullshit?

Not OP but studying biomedicine. That's bullshit. Your memories are stored in the neurons of your brain. Organ transplants can't physically convey memories in any way. People who undergo extensive surgery, near death expiences and endless amounts of medication can start believing that a daydream/story/hallucination was real, or their personality simply changes from the experience itself. Most people are different after going through something like OP.

Let me ask you something... even if it is as you say... do you really want to rob us of that possible connection even if it is only in our minds? It would be the same as robbing people of their religious beliefs because it turns out that Heaven and Hell are nothing but BS.

Its a source of hope for us and tell the thousands of recipients who share numerous stories like this and have met their donor families.

I'm not trying to belittle you or challenge you. Just give perspective.

There is anecdotal truth to it, but memories are a bit more rare than quirks and changes in tastes. Knew one guy who claimed to have gained a memory of sailing and he lives smack in the Outback of Australia. Hundreds of miles from the ocean.

Have your food tastes changed at all? I've heard stories of vegans who haven't touched meat in years getting mad cravings for chicken nuggets after getting an organ transplant from a person who loved chicken nuggets.

I gained an insane sweet tooth initially.

I don't know if anyone's asked this yet but I'm curious how your schooling played out through the years? Did you face setbacks?

The only class I couldn't enjoy as a kid was gym. I had to sit on the side lines because the gym teacher was afraid of me getting hurt. My 7th grade year I told her you either let me play with my class mates or I will cause you more trouble than you have ever had and it will be your fault because I do not have any doctor restrictions. (I proved this by knocking over a ball cart in her equipment room.)

After transplant. School was awesome though I had alot of catch-up work to do my freshman year of highschool.

Thank you for sharing your story! Modern medicine is absolutely amazing sometimes. My question is about the grapefruit restriction- is it because of reaction with your new medication or for some other reason?

you hit the nail right on the head. Grapefruit citric acid causes a chemical reaction with my meds that reverses the effect of immuno-suppression. (How doctors explained it to me.). One grapefruit or glass of mountain dew wouldn't end me, but repeated could be very detrimental.

Out of curiosity, do you notice a difference? I'm very uneducated on this but I have always been curious if you would notice a BPM change or anything.

The difference between my old and new heart is night and day.

Before... my body always ran cool and slow. 100 beats a minute at max after running, Temperature was a few degrees colder, Couldn't be in a pool or bath for that matteer for more than 10 minutes without my lips turning blue. My skin was super pale all the time.

Right after the tranplant however... the nurses had to keep my room at 50 degrees farenheit and no blankets what so ever because I felt so hot. My poor mother suffered for weeks until I became more acclimated to how the human body was supposed to feel. She had to wear a heavy winter coat in the room at all times. My skin turned flush red because the blood flow doubled. My heart felt like a powerful freight train. I felt... alive.

Do you like the Grateful Dead?

never listened to them, but will give them a shot.

Congrats on the new heart. My question is, who is the bigger idiot, Trump or Moscow Mitch?

Thank you. As far as your question... Im going to say any politician who puts money and personal image before Health and safety of the citizens is and insult to the term idiot. I don't actively/verbally identify with either political party not because I don't think it matter, but because the American System has become too flawed to choose Republic or Democrat. I may identify as Democrat on the ballot because it requires you to choose a side, but there are alot of Republican ideologies I align with.

What are the side effects of the organ rejection drugs?

Some organ rejection drugs cause cystic acne. My shoulders look like a warzone of pimple scars. Thankfully i got that cleared up.

Another is swelling of the face. Steroid anti-rejection meds are famous for this. I had a big baby face for about 8 months. Think big Jack Jack from Incredibles 2.

Rapamune can cause warts on your fingers and bottom of your feet. Fought with those for months.

So I hear you've got a sweet tooth.

What do you think about banana pudding?

Have you tried the magnolia bakery style banana pudding?

Weird how life is right?

What do you teach? Primary school? High School? US History?

I love banana pudding! GIMME!!! No I have not tried Magnolia bakery style... is it good?

Life isn't weird. I find it... magical for a lack of a better word.

I teach 5th grade language arts and reading.

Why did you think this would be an interesting AMA?

I didn't think... I knew this would be a good AMA because there are alot of misconceptions and general facts about transplants that the general public doesn't know about. As a recipient who received the gift of life... its my duty to spread the word and advocate about what the average person can do to contribute and all it takes is saying yes when the time comes.

So why the change of of heart?

I was suffering from congenital heart failure. It was transplant or death

You like pineapple pizza?

Yes I do. I know I know... I'm "heartless" lol!

Did you meet the donor's family, and if so, are you still in touch?

I wish I had that opportunity, but sadly it never came to pass and I probably never will at this point.

Could you please explain what kind of insurance it is that covers such an expensive surgery? Where do I find it and how much it costs to get one? I wish you fast recovery and strong health!

I had the insurance through my father's place of work. He paid a small copay and the company paid the rest. The company was Blue Cross Blue Shield

Does it like, feel weird? Idk how to say it. I heard that transplanted hearts always beat the same rhythm. If this is true, does it feel weird? And does anything else feel weird or does it feel normal?

All systems are normal for me. May get a twinge of discomfort from an angry half dead nerve cell from time to time, but that's it.

How old was the donor? We’re there any side affects coming from the donors heart that changed the way your body works?

I unfortunately know nothing about my donor outside of the fact they were from Mississippi and even that is only a hunch. There is alot of hoops to jump through to find out who donated organs. I also know that my donor had a sweet tooth, because I picked it up from the transplant.

Do you consider yourself to have two birthdays because you received the heart?

Yes and my two birthdays are 5 days from each other so I get lots of gifts in a short amount of time. Lol!

I've heard that when one gets a heart transplant, that the nerves controlling your heart rate aren't connected anymore, and your heartrate just sort of ...beats at a fast steady rate whether you're running or being a couch potato. Is this true?

That is indeed false. The nerve endings you are talking about are linked to pain. Not heart rate. It takes longer for my heart rate to fluctuate, but it does change when running and doing other activities. I may not feel pain if there is trouble in the area though. That's why I have to be attuned to every part of my health.

Did you compete in the transplant games? If so what event(s)?

Lets see... Ive been to the 2012, 2014, and 2018 games held in Madison, WI, Detroit, Michigan, and Salt Lake City, UT respectively.

Events include

5k walk/run

5k cycling race: 2 gold/ 1 silver

20k cycling race: 1 silver/ 2 bronze

Long jump: 2 bronze and max jump is 12 feet 7 inches

4x100 relay race: 1 silver

100m dash: 2 Gold

Bowling: none. (Not a strong bowler)

Volley ball: None

Pickleball: 1 Silver

Nice! You're more athletic than I am by about 5 miles lol

I try to keep myself in good shape. Covid is giving me a bit of a gut though.

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Yes. My heart is denervated which means i have limited nerves in the area. My heart doesnt respond to exercise as fast so i have to spend more time during warm ups and cool downs.

How long will it last before you have to try and get a new one?

I don't know. As long as I take care of it my doctors say I may never need another.

How long was the procedure, and how long did it take to find a donor? Or was it all relatively quick?

The procedure itself was 12 hours, I was on the wait list for the heart 5 days which is insanely short, my recovery time was a month before I ever saw home again. 1 year for true recovery and i was considered normal again

Seems quite stressful to say the least, unfortunate that you needed the surgery but very blessed that you were able to get a heart that quick! That’s awesome

I count myself very blessed.

Do you still go to the doctor often to make sure everything’s ok?

I go every six months for check ups and I have blood work done every 4 months. When I first got out... I was there weekly.

In what ways has your outlook on life been moulded by the procedure? Obviously a heart transplant is a life altering experience for anyone let alone someone who is only 14 years old.

It makes you realize how fragile life truly is. A healthy person may feel invincible, but all it takes is one mistake to end it all. Kids in my class at school used to crack jokes about death, but when they saw the true nature of my situation... it changed alot of things for not only me... but them as well. Seeing a fellow classmate laying comatose in a bed with 14 iv bags strapped to him and a tube down his throat is a real eye opener... especially since not even a week prior I was playing kickball with all of them.

What was it like growing up with a heart defect? Did you feel like you were on borrowed time?

The saying "ignorance is bliss" really applies here.

No more than the average person at the time. The idea of borrowed time didn't hit until it was an afterthought and I had my transplant. I never knew how weak my body was until after I felt what the human body should really feel like.

First off, thanks for doing this AMA. Also, I have a few questions myself

I would believe that having heart problems makes it hard to do some things. What are some things you can’t do because of your heart condition? What are some of your hobbies?

The only restriction I have is raw foods like sushi and I can't eat grapefruit. Grapefruit has a reverse reaction to my medication and could possibly kill me if I ate it often enough.

I also have to take longer on warm ups and cool downs for exercise due to my heart and muscles around it having no nerve endings (getting sliced open as many times as me really decimates your nerves). I sometimes cant feel things around my chest like chest pain. If something is wrong... another part of my body will respond like a shoulder or even my neck.

Hobbies I enjoy include but are not limited to hiking, fishing, horseback riding, camping, biking, reading, playing RPG games like dungeons and dragons or pathfinder, Video games, animal husbandry (I keep 3 different species of reptiles), and many other things.

Any new memories? Change in personality?

No changes in personality or memories, but I gained a sweet tooth and my "dark" sense of humor came out of the wood work. I make "heartless" jokes all day long.

Does your body react to cold differently since your transplant?

My lips would turn blue pre-transplant. Post... I often go outside to make snow angels if given the chance.

Was there a buy one get one free deal?

There was a one life died, 5 were saved deal. My donor saved 5 people besides me. My heart, a set of lungs, 2 kidneys, and a liver.

I got a kidney transplant in 2007 as well! I’m curious what your drug regimen is like. My immunosuppressive therapy is Cellcept, Advagraf and prednisone. I also take various other meds too. What’s your like? Did you have any issues?

Happy 13 years comrade!

I am on Rapamune and Prograf for immuno-suppression. I take magnesium+protein supplement, D3 supplement once a week, Asprin as a blood thinner and one other to combat possible coronary artery disease, but the name escapes me.

Oh! And a multi-vitamin for good health.

I used to take Cellcept. Good times. Prednizone can burn in the abyss. Stuff made me look like a balloon

Mike Tyson has one as well. He claims to feel or express the personality of the person he got the heart from, Said it made him a much calmer person.

Did you experience any changes in personality after your transplant?

Not changes in personality, but I gained a sweet tooth. Liked sweets before, but now I love them.