I am a 20 year old heart transplant recepient. AMA

Do you feel a kinship with the Tin Woodman?

I sympathize with him. I am disappointed and jealous, however, that I didn't get to meet a wizard because of this whole ordeal.

I've heard that people with donated organs sometimes have new personality traits or tastes for foods that they never would have had before. Has this happened to you?

I love this question!

The day I woke up from the coma I was in after my transplant, I had a strong craving for peaches. I hated peaches for the first 18 years of my life, but now I cannot get enough of them.

I don't really have any new personality traits, but I DID think my name was Mackenzie the first few days I woke up after my transplant. I eventually remembered that my name is actually Taylor, and things went back to normal. However, it was ~spooky.

Do you know if the donor had these traits?

I'm not sure yet. I don't know who my heart is from, unfortunately.

It's great to hear about your recovery and how your experience has shaped your future aspirations! I think stories like this are so important, because it proves the importance of donation - I'm printing off the form to register now! Anyway, was there ever a risk that your body would reject the transplanted heart? Or is it as simple as matching blood type and body weight etc?

Thank you for registering! You have no idea how glad I am that you are doing so.

There is a chance I could reject since my new heart is different DNA. I have to take immunosuppressants in order for my body to accept my heart. I used to take about 46 pills a day, but I'm done to about 15 now. A lot of people have minor bouts of spontaneous rejection within the first few years. This is very easy to fix and clear up. However, rejection resulting from failure to comply to medication regulations (ie not taking your medicine for several days at a time) could result in rejection leading to death. Sometimes a person's body could begin to spontaneously reject and lead to organ failure and death as well.

As a general rule though, at about the ~15 year mark, I will probably begin rejecting and need another transplant.

15 years?! I had no idea transplants lasted that long. Or is that just the first? Will future transplants also last as long, or does the immune system "catch on" so to speak and reject sooner?

Your immune system begins to catch on. I don't think it's a drastic difference, but you'll also be 15 years older and your body will be 15 years more down the drain so...there are a lot of things that go into play with how long you'll live with transplants. I know that most of us just try really hard not to think about it.

Hey, take a look at the recent advancements in artificial hearts. Basically, there already exists a system that works. There's already a few people out there with, not a pulse, but a whir. Only issue is an external battery.

Of course, in 15 years, I'm sure that issue will be fixed as well.

I know, it's fantastic!!

I actually needed one of those artificial hearts at one point (they are called LVads). Unfortunately, my body was too small to accept the internal device so I was ruled out as a cannidate.

They've gotten smaller recently, if I remember correctly.

The FDA just approved a pediatric LVad. Which I seriously could have used, but it was approved a few months after my transplant.

Do you think you'll be able to have a synthetic heart your body won't reject? Whether cloned so it's genetically yours or made to not reject in some way?

There are advancements in science happening right now with 3D printers that print heart cells using the intended recipients cells. They are also becoming able to take a donor heart and strip it down to a matrix, before covering it in the intended recipients cells.

Both of these options would be an amazing next transplant for me. I would no longer risk rejection, and I would have a heart that was genetically my own.

I have a cousin who had a heart transplant in I think 88' and was recently taken COMPLETELY off his immunosuppressant medications.. I also know many people who are 15+ years out who have not needed a new heart.. Is this what your surgeon told you? Because I've never heard of this until today..

I too had a transplant back in 2007 and none of my doctors or my personal research had such information. I'm by no means trying to be rude.. But I feel like that's something my doctors would've known and told me as we shared complete transparency. I had my transplant at Cleveland Clinic which has been ranked #1 in Cardiovascular Medicine 13 of the previous 15 years, so I'm going to be upset if they don't know this when I have my next cath.

The average life expectancy with a first transplanted heart is 12 years. Since I am younger than the average transplant age, it will probably be a bit longer for me.

I know a bunch of people who have been retransplanted about 10-15 years out. While my personal doctors have never given me an exact statistic, my friends doctors have. My doctors have also told me that I will probably not reach an average life expectancy with my first transplanted heart. The longest a person has lived on a singular transplant is about 25 years.

Medication is getting so much better that this statistic is beginning to drastically improve.

Looks like my cousin will be setting a new record this year as he is now 25 years out and is no longer on a immunosupressant medication. I hope my new heart holds up like his has.

That's really great that your cousin is doing so well. That's rare but fantastic.

(Oh fun fact! The person who holds the record right now hard their transplant the Cleveland Clinic!)

Hoping I'm not to late. I have scleroderma and have been told I will, not soon, but eventually need a double lung transplant. Iv thought a lot about if I even want to go through that. It just seems like to much for me to handle. Not physically but just mentally I can't see myself being able to go through it. I know its a little different from a heart transplant but What are your thoughts/advice? Btw I'm 17.

I know several people who are waiting for lung transplants right now. The process is pretty much the same.

I won't lie to ypu, the whole transplant process sucks. You WILL be miserable, and there will be points that you WILL wish you had decided to die instead. However, you need to power through those points.
After your transplant, the first time you wake up and notice the sun starting to rise through the window of your hospital room I can almost promise that you'll cry because of the beauty of it. After your transplant, the world suddenly seems like a better place and you really learn to appreciate things.

I don't regret having my transplant for a second. I still have invasive biopsies frequently and I still someone wish my life was easier, but it was all worth it because now I have time to appreciate the world.

(I also have time to hopefully see how Doctor Who ends which in of itself makes everything worth it.)

do you know whose heart was donated to you? Cause I think that would creep me out a little bit, knowing I had someone else's most vital organ. Sorry if it's a weird question, but does that mess with your head at all?

I don't know yet, actually! I have contacted the donor's family and they have accepted my letter, but I have not received a response. I know that they lived in Georgia, and that is all. It is extremely weird to know that my heart was once in someone else's chest. I take comfort in the fact that they wanted their organs donated, and I am so glad that they had such a strong and healthy heart.

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I think so! I've put a few pictures up here: http://imgur.com/a/Lp2pW

Probably a dumb question, but why did they cut into your abdomen also?

Ah! This isn't dumb, I just didn't address this yet.

Before my surgery, I was placed on a life support machine called an ECMO that went into my femoral artery and sent my blood outside of my body and through the machine and back into my body so that my heart wouldn't need to pump. During my transplant, they removed the machine and tore my femoral artery. I bled out into my stomach and needed 6 blood transfusions. They eventually drained my abdomen and fixed my femoral artery, but I died several times and was shocked back to life in the process.

tldr; They cut in to my abdomen because I bled out during surgery.

Ohh. That would make sense. Glad to hear you're ok!

Thank you!

What is the small scar near your collarbone from?

I had an internal defibrelator for about a month before my transplant. I was there to shock me if my heart stopped or began to beat too fast.

What was running through your mind when you knew that you were getting the transplant?

Oh gosh. I was at school only hours before I was diagnosed with my heart condition, so I was not expecting to be diagnosed with a terminal illness.
I remember when the doctors sat me down and explained to me that I would die without receiving a new heart, I was...numb. My parents began sobbing and I just stared at the doctor in stunned silence. As I had time to think about it however, I was terrified. I was worred about the pain and the recovery and the medication I would have to take. I was worried I would feel ugly with my new scars. I was worried that I would feel empty and different with a new heart pumping my blood through my body. I have to admit though, I was always the most worried about how I would end up receiving my heart. While I was waiting for the heart, my future donor was still alive somewhere. I knew that they would have to die in order for me to live, and that was a hard fact to sit with.

what is the most ridiculous thing people say to you when they find out about the surgery? How do you respond?

I had one man tell me that he hoped I hadn't received my new heart from a male because he didn't want me to become a lesbian. I choked back laughter before I had to explain to him that I wouldn't suddenly fall in love with women because my donor was attracted to women. He apparently didn't know that that's how love and attraction work. That is still, to this day, the weirdest thing that has been said to me.

I have also had several people tell me that I shouldn't still be alive because "God had intended me to die". I've learned that the best response to that is just to ignore it because seriously, what could I actually say to that?

Congratulations on graduating! What are you planning on studying in college and how does this change how you'll approach it?

Thank you!

I was orginally planning on attending college as a psychology major in order to persue criminal psychology. Since the transplant, however, I have decided that I could never work anywhere that isn't a hospital. I am now studying child psychology in order to become a "Child Life Specialist".
Child Life is basically pediatric grief counseling. Basically, when a child has a terminal or life threatening illness and will be requiring long term stay in a hospital, they are assigned a Child Life Specialist to make their stay easier. The specialist brings the child games, holds their hand during tough procedures, explains surgeries, engages in theraputic play, and helps the siblings and parents through the hospital stay as well. Child Life Specialists also help children understand the dying process if the illness or injury is serious enough. I definitely feel like I have found my purpose in life and I truly believe I will be able to help these children through their experiences.

I can't believe the number of people that aren't donors and the BS excuses they come up with.

Can you explain some of the excuses you hear? I've never met anyone who was admittedly against organ donation.

A lot of times people refuse to sign up because of "religious" reasons (although every major religion supports organ donation). I think the most overwhelming excuse is that it "creeps them out".

Let's get to the heart of the matter here.............

What was it like being in a coma? Did you dream?

It was like blinking. I was in a coma for a week and it felt like a split second.

Wow weird. So no dreams or anything?

Did you wake up refreshed?

I woke up exhausted.

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Cinnamon.

I have no idea how organ transplants work, so..

How did you get a new heart so quickly? I mean, 3 months doesn't seem too long when people are on a list for years before an organ comes their way. Was it different because you needed a heart? Am I really off on this?

Most people don't know how this works actually! The UNOS (United Network of Organ Sharing) is the list that people who are awaiting organ donation are put on. A patient is not classified by name or any other typically "personal" identifying information. A patient is classified by severity of illness. I was on life support when I received my heart so I was pushed to the top of the list. If you are ill, but not dying, you aren't extremely high on the list because you have time to wait. If, like me, you're actually dying, you get pushed to the top of the list. Hearts are matched with patients based off of blood type, prior illness, body weight, and other medical matches. So even if I had been the first person on the list and (let's say I had an B- blood type) an A+ heart had become available, I wouldn't have been able to receive it.

Ahh, so because you were in really bad shape, you were pushed to the top. That makes sense. I didn't know that they are classified by severity. Glad to hear you have another chance :)

Thank you, I am glad as well!

Have you ever considered trying to discover whose heart you received? There was a great episode of This American Life where a young woman got in touch with the family of her heart donor. It was tough to listen to, but very moving. Congrats on being alive!

Thank you! I really am glad to be living.

I want to discover who my heart belonged to so badly. I will be ready to speak to the donor family when they are ready to speak to me. I know it will be really emotional and difficult to be in touch with them, but it's something I feel like I need to do.

Is there anything you try not to do in regards to cardio? Like running long distances, intense workouts, extreme rap battles or anything else?

I'm actually not limited at all anymore. My doctors actually encourage active cardio, although I have never asked about extreme rap battles.

(I am allowed to skydive though).

I've heard the rap battles are like skydiving. May I ask another question or is one of those "everyone gets one" threads?

Other question: What led up to finding out you'd need a new heart?

I caught the common cold and it attacked and destroyed my heart muscles. It was a complete shock, and by the time we found out how badly destroyed my heart was it was too late; there was no "fixing" my old heart. The only option was to scrap it and start off with a "new" one.

Genetics dealt you a lemon, bravo for finding a better salesman :)

I actually had a virus! I wasn't born with this condition. It was a complete fluke.

But thank you none the less.

Wait.... So this virus which deteriorates your heart muscles comes with the common cold?! The common cold can do this to anyone?

Yeah, absolutely anyone. I just got really unlucky.

Were you awake while you were on life support. What was it Like? What did they do to keep you alive?

I was awake part of the time. To be honest, it was the worst few days of my life. When you are on life support, you are tied down and unable to speak. I was in pain and unable to tell anyone and I was incredibly uncomfortable. The only thing that I could even begin to compare the experience being like is...imagine that you're fully paralyzed. That's what it was like. I was on a machine called an ECMO that was circulating my blood outside of my body so that my heart did not have to pump. I was also on a machine that was breathing for me so my lungs did not have to work.

How long do you expect the new heart to last? Is it something that will last for 60 years or is it a 5 to 10 year thing?

With current day medication and life expectancy projections, I may need another transplant/I may die in about 12-15 years. However, in 15 years they probably will have better medication and technology that could allow the new heart to last for the next 60 years instead.

I'm not sure how far along artificial organ science is, but did your physician or surgeon ever consider or talk to you about an artificial heart over a real one?

They did...kind of.

These current day artificial hears (or LVads) are huge devices. They aren't permanent and they are bothersome. They also have an outside battery pack. My chest is too small to fit the LVad, so although my doctors and I talked about it, it was never a true option for me.

I wish I'd seen this sooner! I received a kidney from my mom about 10 years ago in Richmond, so I understand some of what you're going through. On the other hand, there's really no comparing a heart and kidney.

1. How do you deal with telling people who don't know about your transplant? What are their reactions like?
2. Because of one of my medications, I haven't had anything with grapefruit in 10 years. Do you have any dietary restrictions due to your medications?
3. Since organ donation is such a personally important thing for you, how do you react (both internally and externally) to people who decide not to be donors?

Congratulations on 10 years! That's super awesome!

1. People are always really shocked. The general population doesn't sit and ponder transplants on a daily basis, so to actually meet someone who has been through the process I think is a little surprising. I don't normally mention the transplant to people that I just met, but the topic will typically come up pretty quickly. I'll mention medication, or dietary restrictions, or a doctors appointment and people will ask why. Or, I'll be asked about my scars and I will explain. I don't tend to bring it up on purpose though.

2. I'm not allowed to eat grapefruit, sushi, meat that isnt "well-done", cheese that hasn't been pasterized, and anything fruits or vegetables that haven't been washed really well.

3. I don't understand why anybody wouldn't want to be a donor, but I respect when people don't. I would hate to know that my heart came from someone who was guilted into donating, so I would never want to guilt someone into the situation. I want all organs that are donated to be given freely and not out of compulsion.

I can't emphasize fully cooked meat enough. I managed to get salmonella within my first year and that might've been more miserable for me than the transplant experience. Everything else on that list seems very familiar.

My mother worked at DMV for a while and had to ask people if they wanted to be donors as part of the whole license thing. For her it was personal too, and while she had a perspective few others in her position had, some people's misconceptions about the donation process were too much to overcome. She also heard a lot of "I'm taking it all with me." My weirdest one was when my girlfriend was renewing her license and put herself down as undecided. We are no longer dating.

Best of luck and good health to you! Hopefully by the time you'd need a new heart there will be other equally or more effective options. I know I look forward to a day when the transplant list starts going down.

People do have a lot of ridiculous misconceptions. Part of my job at Washington Regional Transplant Community is to travel around to schools, health fairs, and other events in order to educate people and talk to them about the most common misconceptions. All most people need in order to support donation is education. I'm working to educate the masses.

I would break up with my boyfriend if he refused to be an organ donor too, actually. Although I don't believe anyone should give out of compulsion, if someone is in love with me it wouldn't be compulsion.

Can you describe what happened from when you contracted the virus to your needing a new heart?

I started having trouble breathing and I went to see my doctor. My doctor told me that my lungs were fine and I was just having panic attacks. I actually have a panic disorder and I know what panic attacks feel like, so I knew she was wrong. I spend the next few days sleeping sitting up because I couldn't breathe AT ALL when I would lay flat. Finally I went to get a chest X-ray because I thought my lungs were broken. I was then rushed from the X-ray place to the ER of Fairfax Hospital. The whole thing was so insane and unexpected.

How old is the heart you received?

I'm not sure!

I was about 80 pounds at the time of my transplant due to being extremely sick, so it was probably a young teenager. But that's just a guess.

What is your typical weight?

I typically weigh about 105 pounds. So I lost about 25 pounds waiting for transplant.

Were you an organ donor before you received the initial diagnosis?

I was! Everyone should be. You really can save a life.

Where I'm from organ donation is opt in, and not everyone who supports organ donation is even registered. Do you think it should be made an opt out service instead?

This is a tough one for me.

I /wish/ that organ donation was an opt out service, because so many people support organ donation but do not know how to register. I also know that if organ donation was an opt out service more people would receive the organs that they so desperately need.

I know that being an opt out service could be problematic though. Some people would be ignorant to the ability to opt out, and organ donation could become even more controversial than it already is. It is comforting to me and I like knowing that my donor CHOSE to become an organ donor. I worry that I would possibly feel morally uncomfortable knowing that I possibly received an organ simply because someone was ignorant to the procedures.

I agree with you, I think it is important that true consent is gained. However the issue needs to be approached, as to be honest, you would need to be very passionate about the topic to be proactive enough to be registered here in the UK. This is why I think perhaps the best solution would be to make it an obligatory question on passport/driving licence applications so the compliance rate increases. In my experience most people would be happy to donate, they just never 'get around' to do anything about it

Exactly, that would be a great way to go about things.

In the United States, you are asked about organ donation when you receive or update your driving licence. However, it is not required to answer either way.

Through working for an organ procurement agency, I've found that the overwhelming majority of people support organ donation as well. The world just needs a much better way of reaching supporters.

How long we're you waiting for a new heart?

I was on the transplant list in some capacity for about two and a half months. I was a 1A (the tip top of the list) for about two days.

Both of these waiting times are really rare and really short.

you are so lucky. im in mass general right now waiting for a heart ive been 1a since march 6th and before that i was status 2 for 2 years at home.

Oh wow. Hopefully one comes soon. Good good GOOD luck. Stay strong.

Was the procedure done at Cedars Sinai in Los Angeles?

Nope. I had my transplant at Fairfax Hospital, the same hospital Dick Cheney had his transplant.

One of my friends had his done at Cedars Sinai though!

Have you had any memories from the donor?

When I was in the hospital recovering, I was convinced that my name was Mackenzie. I also woke up one morning and told my mom that my donor was a 16 year old black girl who has in the car with a hispanic boy and the car crashed.

I WAS incredibly drugged while I was in the hospital, so those could have both been insane painkiller dreams.

Do you know what happened with your old heart? Can they somehow use it for science in any way?

This is a great question.

Part of my old heart was given to science. Most people who need a heart transplant have a diseased aorta. I did not. There is a current study that is focusing on curing those diseased aorta's. Unfortunately, they don't receive enough healthy aorta's to study in comparison. The study has my aorta now though.

The rest of my heart was either sliced up and studied in a pathology lab (because we are still not sure what virus I had that almost killed me) or literally thrown in a garbage can.

That aortic study is towards a genetic disorder, Marfan Syndrome, that my little sister has. It's cool to see that some part of you may one day help her.

My roommate has Marfan Syndrome so it's nice to know I'm helping people like him and your sister!

What was the first thing that came into your mind when you woke up, with that new heart?

Sorry to disappoint, but I was actually so drugged that I had no idea what a heart even WAS.

I'm doing a project on Blood donation and Organ donation awareness for a final project. I was wondering; 1. What the communication is like between doctors and Patients (Do you have weekly visits and check ups?) 2. What was the day like of the transplant like? (rushed or surprising?) 3. Do you feel any healthier/ stronger since the transplant? 4. What kind of medication/ treatment do you do now to make sure nothing bad happens (if you take any) 5. And how much did your insurance cover? For both the operation and meds.

Congrats on finding a match! and congrats on a good recovery!

1. For the first year after my transplant I saw my doctors every other week. I had biopsies every month and I have a telephone number I can call 24/7 in order to get in touch with them. Now, since I'm almost 2 years out, I see my doctors every 3 months for a biopsy and I'm in email contact with them frequently.
2. I don't remember much about the day of transplant (I was extremely sick). But, my parents said it was a really rushed and extremely emotional day. There was a lot of crying and a lot of hugging, but tons of worrying too. They truly didn't know if they would ever see me again.
3. I feel so much stronger! I didn't at first, but I do now.
4. My anti rejection medications are prograf and myfortic. I also take blood pressure medications and cholesterol medication. Right after my transplant I was also on a steroid and a antibiotic.

If you're an organ donor (which I am), is it true that ambulances and doctors may not try as hard to save you, because you could provide new organs for lots of sick people?

It's not true. That's a huge rumor.

Paramedics and ER doctors are not legally allowed to be part of the organ procurement process.

Also if you think about it, why would a doctor who has sworn to save lives let a person die who is directly in front of them to save a person that they cannot see and will never meet?

It's a very logically flawed rumor.

Do you feel in any way physically different with the new heart? Does it feel stronger than the original?

My old heart was really great and strong until I got whatever virus I got. So my new heart feels the same as my old heart before I got sick.

How does taking immunosuppressants daily affect your life? Does it limit your ability to travel or hold particular jobs?

I get sick a lot more easily and a lot more often due to my medication. I'm not allowed to travel to any country that would not have am English speaking doctor in their hospitals. I'm been strictly forbidden from visiting any African country, as well as Russia.

I'm not really supposed to have a job around little kids (although I do any way so whoops) and I am forbidden from any construction related jobs.

Thank you for doing this AMA! I have a couple more questions if you don't mind.

1. Do you have any physical limitations as to what you can do? (ex. Working out, sports, skydiving, etc.)

2. Did you notice any emotional changes after the transplant? I've heard that women especially tend to get depressed/experience strong emotional change afterwards.

3. Did you have a "living" heart transplant?

4. Why are you particularly forbidden from Russia? I understand avoiding Africa but I assumed parts of southeast Asia would be a greater concern than Russia.

1. I'm not limited much actually. I wasn't allowed to skydive for the first year and rollercoasters are still questionable but everything else is fine!

2. A lot of the medication I'm on have severe anxiety and depression side effects. I'm now on anti depressants in order to combat this.

3. What do you mean by "living"? My donor was brain dead when they donated, which legally and medically means they were dead. But their heart was still beating, which isome people consider being alive.

4. Russia's medical system is...flawed. I don't think that particular country is a language issue, but more of a safety issue.

How many pills a day do you need to pop?

It used to be 46ish but it's about 15ish a day now. Only 5 of those are immunosuppressant pills though.

Are you eventually going to phase off the pills? Or is this lifetime?

Some people eventually phase all of their pills out. Other people's (the majority) bodies will never fully accept their new organs and they'll need to be on medication for life in order to keep rejection at bay.

With a new heart do you find yourself with a new lease on life? Do you live it up now or play it safe knowing how fragile life can be? Do you feel the bellybutton other person?

Last question is odd but the others i want answers to.

I definitely have a new lease on life. I am so thankful to be alive, and I appreciate the little things more. I am trying really hard to live my life differently than before. I try not to worry about what people think about me, and I try to throw my entire soul into everything that I do. I feel like I am now more loving and gracious than previously because I have seen how fragile life is. It's a hard thing to act on, because it is human nature to be cautious, but I am trying so hard to make my life count. I owe it to my donor.

Congratulations on making it this far! Does it ever make you feel strange, thinking that the organ pulsing in your chest, keeping you alive, is from the body of a now-dead person?

It's increidbly strange.

I try not to think about it, but whenever I get excited my heart beats faster and I remember. Instead of thinking about how my donor is deceased though, I try to think about how cool it is that my heart has been places that the rest of my body has never seen (example: I've never been to Georgia, but my donor lived there so my heart has been).

So when they contacted the donor that his heart was compatible with your body type, he gave his life for you, although he was healthy man? Or he also had some kind of illness? In both ways I think that THAT KIND OF PEOPLE should be on the news (not rich-spoiled-attention seeking famous people) and monuments need to be rasied for their good souls.

No no no!

Okay. So basically my donor probably died in a car accident. Or they were murdered, drowned, committed suicide, etc.

To be an organ donor, you have to be on life support when you die. You need to suffer a brain death, compared to a circulatory death. My donor had previously stated that they wanted to be an organ donor, so when they were declared dead the doctors harvested the organs that were able to be used.

Ahahah who broke your first heart you vagina?

Nobody did, but my first heart broke my vagina. I didn't have my period for like a year.

So there's that.