Hello Reddit, I have been on a heart transplant waiting list for the last 5 years and have been living without a human heart for the last 10 months, I just completed the 4.2 mile Pat Tillman run on Saturday, AMA!

Why isn't this bigger news? This is unfucking believable.

Dick Cheney also didn't have a heart for a while; its been in the news. The newest versions dont "pump" but generate a steady flow a blood through the system.

Cheney had an LVAD which is an assist device that attaches to the existing heart but does not replace it.

Did you have anxiety, panic, freaking it out in any sort of way...when you woke up after the operation to insert the artificial heart?

We all point to our heart area if someone asks us to point to ourselves.

I imagine it affects a person emotionally to have their actual heart removed...what was your emotional adjustment like?

Yes, that is very intuitive of you, I haven't shared that with many people because it is such a hard concept to express, but when I realized that my heart was gone I struggled for a while with the concept of my "self" and how much of me had been lost. All of the post op pain killers didnt help much with my inner philosophizing either.

Ship of Theseus. I used to be really interested in working with prosthetics. Life took me elsewhere, but I still think about the implications of change like that.

I don't know if hearing that old dead white guys talk about stuff like this helps, but I've always thought that it's a nice philosophical concept that makes the idea easier to explain to people.

That is an awesome concept, never having taken philosophy I was unfamiliar with it, thank you for sharing.

Holy shit dude are you a robot? You're incredible!!

Can confirm, am a robot.

How did you pass through the captcha?

You humans have no idea how advanced we are.

Ah-ha! Thats how you ran the 4.2 miles, as I, a regualr non robot human, would probably die after .42 miles, nevermind 4.2

There was a .42 mile kids run and one of my doctors did try to convince me that it may be a safer bet, but if I was going to fail I wanted to fail in tremendous fashion, not get beat by a bunch of snotty kids.

I'm assuming your heart continues working by external battery? How frequently do you have to charge?

The external driver has two rechargeable and replaceable batteries, I have a wall charger and a car charger that I can plug in with and that will charge the batteries As it runs the driver.

When swapping batteries does your heart stop briefly? Or is there a window that it holds charge for so you can replace them?

There are two batteries and the driver runs off of them alternately so that a battery switch out goes smoothly, I have 3 sets of batteries. During a driver switch out, from one machine to another, the heart does stop and it is a very unsettling feeling.

I bet it goes like this

It is exactly like that.

Do you mind describing what it feels like?

The high rate of beats per minute means that it beats a little more than twice per second, and the beats are very tangible, if we were sitting on a couch together you would be able to feel it beating through the couch, so imagine that for about half a second that stopped completely. I always make sure I am reclined and relaxed and take a big long breath before hand, but it is a scary feeling.

Wow! Did that take any getting used to? I know I can be kept up by almost nothing so was it hard to sleep at first (or ,hopefully not, still)?

Thanks for answering these btw. I can't imagine the day to day effects.

Yes, sleep is still an issue, and after I came home from my most recent hospital stay my wife had trouble sleeping because she had not been accustomed to it, so I set up my cot in the other room and slept on it for a couple of nights. (I didn't really mind, it was like camping, but I got major points for being sensitive to her needs.)

Oops, dropped the batteries. Aaaaannnnddd they rolled under the couch. Seriously, do you keep a massive supply of extras? I would be absurdly paranoid, I can't even find the batteries that were in my WiiMote last week.

The batteries are rechargeable lithium ion and designed so that you can only remove one at a time.

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The rate is set at a constant 135 beats per minute, it doesn't change to me so I have to plan and adjust my activities to it.

stupid question.

do your limbs go numb/ you cant control them completely when you pull both batteries from your heart pack thing?

The machine is designed so that only one battery can be removed at a time. I don't think my limbs would go numb if it stopped working, but I would pass out very quickly and be dead in a short amount of time.

How long could you stay on a artificial heart? Do the doctors have some many months to find you a transplant before your body begins to reject the artificial heart?

Since there are no biological markers in the artificial heart there are no issues with rejection. The longest I am aware that someone has lived on one is just over 4 years.

Might be an obvious answer, but why wouldn't you be able to live on it, theoretically, for the foreseeable future? Why 4-5 years?

The TAH is considered a "bridge to transplant" so it is only meant to be temporary, but they are trying to get it approved as a destination therapy in for certain medical cases. So yes, theoretically it could support me for an unspecified amount of time but I do look forward to getting a transplant and resuming my life as before.

Does your "has lived" mean that they replaced the artificial heart with a transplant, or that they died?

I like to think they made it to transplant, since this is only a bridge device designed to keep a person alive and healthy long enough to get there. Unfortunately people who are sick enough to need this often have other problems as well, including multiple organ failure, so some do end up dying in spite of the device.

If the artificial heart were to fail, would CPR work? How would I go about keeping blood moving until we got to a hospital?

I have to carry a backup driver everywhere I go in case the primary driver fails. There there are quick-connects on the hoses to facilitate this, but the heart does stop during switch over and it feels freaky to feel it stop beating. I wear a medical bracelet that says in all caps NO CHEST COMPRESSION CPR. I was told that the only person to die outside of a hospital on one of these was because the emergency responders attempted chest compressions and cracked the heart. Our instructions were, in the event of emergency, to call the perfusion team and let them call 911 and walk them through proper procedures.

Have you gone to your local fire station and told/taught them about the TAH? We had a guy that came to our station to tell us about his LVAD but I have yet to hear anything about TAH's till this AMA.

That option was given to us, the engineering crew would educate them if we desired, but my wife can perform any emergency measures I need and we are a short drive from the hospital that is fully trained on it so we decided we would rather keep the loop small and go directly to the experts.

I ran Tillman in it's 7th year after a motorcycle accident with a stent in my Inner Vena Cava and a 18 inch titanium rod in my femur. I felt pretty bad ass until now. Congratulations, on both your continuing recovery and contributing to the great cause that is the Tillman Run.

Thank you and props to you.

How's the sex?

The logistics of having two hoses protruding through your abdomen force creativity, but I have a beautiful wife and we persevere.

How do your kids react to all of this? do they know what's going on, and how old are they? Thank you for sharing your story, this is amazing.

My daughters are 16 and 13, my son is 7, they do well under circumstances but it is a stresser for them. My wife takes them to a counselor from time to time. We have a great faith in God and have relied on him through this and we have taught our kids that regardless whaat happens in this life we will see one another in the next.

how was it possible to live without a heart before your transplant? was there a substitute?

Yes, the Syncardia Total Artificial Heart.

http://www.syncardia.com/total-facts/total-artificial-heart-facts.html

Why is this not suitable as a permanent solution? Why would they keep you on the list to receive a donor's heart? It sounds like you're doing well with it (and to that I say, go you!).

It is high maintenance and requires alot of attention. For one thing the drive lines that power the heart go into my abdomen just below my rib cage and can be a sight for infection if not properly cared for. Twice a week we do a sterile dressing change, where we turn our bedroom into an operating room, medical gowns and masks are required, the sight is scrubbed and rebandaged. It is currently being studied as a destination therapy for people who are not eligible for a human heart transplant or may have unique rejection circumstances.

I don't know if you would even know this, but how much does an artificial heart cost?

/Well done with the 4.2 mile run.

Honestly I am scared to ask. But the support that comes with it is included in the original cost of the heart.

Do you have a pulse?

Yes, the TAH only pumps about half the volume of a biological heart so it runs at about double the speed, 135 beats per minute in order to keep up with demand.

does the rate increase when you run/exercise?

The beat is set and does not increase. The volume pumped per beat will increase slightly, my engineers checked the fill volumes on the read-out before and during the run, at rest the heart was at 47% fill per beat and increased to about 51% during exertion.

This may be more of a technical answer than you can field or that I want but I'm curious....

You say that the TAH's beat is set and does not increase and that the volume does so slightly, what happens if you exert your body past the needs of what the TAH can keep up with? Do you just get fatigued/tired/over exerted just like anyone's heart would when they hit max cardio? Or do you develop any weird sensations, otherwise?

Yes to what Cactus said, fatigue and light headedness.

Are you ever scared/nervous about your future regarding this?

Yes and no. I worry that I wont be there for my kids, especially my son who is only 7. I worry about my wife going through the rest of her life as a widow and whether she will find a good man to marry when I am gone. I am not scared of dying. I have been alive for 40 years which seems like nothing to me and in the scope of history it really is, in another 40 I will almost certainly be dead, so I dont really think it will make a huge difference to me at what point that happens.

Have you ever played Dragon's Dogma? It's a game where your heart gets stolen by a dragon, and you have to go on an epic quest to get it back.

Never played it, but that does make me think that maybe I am simply living in someone else's game of Dragon Dogma and I need to go find the bastage dragon that stole my heart. I am not good at epic quests though, so this may pose a problem.

I saw you the other day with your son on the front page, at what I believe, was a football game.

What's you blood type? I might be exiting at some point in the coming months, and if it does good for someone...

I am sorry to hear that about you. I hope that you are able to make the most of the time that you have left.

How long will the Syncardia last between "tune-ups?"

Since there are no biological markers in the artificial heart there are no issues with rejection. The longest I am aware that someone has lived on one is just over 4 years.

Were your doctors supportive of your decision to push yourself and continue running, or did they advise against it?

They were supportive of me, several members of my medical staff came along.

In support of the cause, or making sure you were ok?

Both are completely honorable reasons btw.

Mostly to keep an eye on me and make sure I was okay.

Sorry if someone has asked this or if it's weird but.. were you able to see your original human heart? I don't know, I feel like if it were me, I would have asked the surgeon to put it in a jar for me so I could keep it.

We kept my two prosthetic heart valves and my wife and I plan to make matching necklaces out of them. I did not have any real desire to see my own heart come out of my chest. I have a good friend I made who went through almost identical scenario as me about 6 months before I did and he has a picture of his heart as it was pulled out of his chest. He posted it to his facebook page on his one year anniversary of transplant.

How difficult was it to run that distance without a living heart? Was it easier because you no longer have to use that muscle and it is powered for you?

It was rough. The TAH can accommodate slightly for an increased need in production but it is minimal. There was a point in the run where I was certain I was not going to make it, between mile 2 and 3 there is a long incline and about 3/4 of the way up I thought I was going to throw up and had to stop and lean on a fence post.

Have you thought anything about the connection you'll have with the person who you will be getting a heart from? Do you plan on contacting their families or sending gratitude in any way?

Yes that is something that is definitely on my mind alot, in order for me to live basically two people will die, the donor and the other person on the list who doesn't get that heart. I do plan to write a letter to the donors family, it will be sent to UNOS which is the organization that governs organ sharing and they will send it to the family and then it will be up to them if they wish to meet me. I understand that some families would rather not meet the recipient and will respect their privacy if that is the case.

I know that I am really late to this but I just wanted to share our experience with you.

We had a friend that was murdered via traumatic brain injury. His family decided that he would become a donor. 4 people are alive because he died. So, just because someone else died in order for you to live, don't assume that only you will be saved by whom ever you get the heart from.

When my grandmother died, she also was a donor, they couldn't take much from a 62 year old lady but they did take her corneas.

I wished that everyone were a donor. I figure that I don't need anything after I die so I want them to take as much as possible from me. I have a card with my drivers license that I got from a heart transplant patient. It has my husband's and mother's signatures on it as witnesses that I want to be a donor. He told me that it is not always enough to have donor on your drivers license to become a donor.

Thank you for your selfless gift.

What are some things that you need to be careful of in everyday life? Does the heart have metal? Do you need to stay away from magnets? How do you adjust to these precautions?

No metal in the heart so I dont need to worry about magnets. I did have a pacemaker for about 4 years before I received the TAH and that was sensitive to magnets.

This might sound like a stupid question - but what do feelings like anxiety, adrenaline, etc feel like when your heart beats at a constant rate? Normally we tend to associate states of arousal like that by quickened pulse and it feels very representative of those feelings to me. Do you feel like it helps you remain calmer? Or possibly the opposite effect due to the fast rate at which it beats?

Someone who is better at biology than me could probably describe this better, but the large vega nerve bundle that is severed when the heart is removed necessitates a longer response time to outside stimuli, like I climb a flight of stairs and dont feel short of breath until I get to the top, then it hits me. This is actually something that is common in all heart transplant recipients.

When you ran did you have to carry a pack for the machine... or wss it still linked to the cart?

Everywhere I go I carry the external driver in a backpack. Everyone on my team offered to carry it for me at one time or other but I really felt the need to do it myself.

Thanks for doing this! Your story is amazing and inspirational. Here are some of my questions:

How do you shower? Can you donate blood? Have you ever had a bad time getting through airport security (if you ever fly)?

Funny you should ask about the shower, I commented on another thread that I hadn't showered in over 15 months and the response I got to that is what convinced me to do an AMA. I take sponge baths but mostly I have learned to bask in my own musk.

It is policy in the US that anyone who has had open heart surgery cannot donate blood, I tried to donate about 15 years ago but because of a previous surgery. I haven't flown but it is approved for commercial air flight, I believe someone just flew for the first time with one a few months ago from Minnesota to South Carolina (maybe.)

does it feel any different than having a real heart?

Yes. It runs at 135 beats per minute and each beat feels like a small child kicking me in the chest. My wife says I finally know what its like to be pregnant and kicked by the baby. I let people put their hand on my chest to feel it and the reaction is always astonishment at the force of it. But after 10 months I have gotten quite used to it.

What is it made of? How does it function?

The implanted heart itself is some kind of medical grade plastic, there are hoses that run from it out through my abdomen and pump air from an external driver that runs the pistons inside of the heart and pumps the blood. This is an animation of it functioning.

http://www.youtube.com/watch?v=h4-vZTW5O94

Are you a real life Chev Chelios?

I had to look this one up, I dont think I am anywhere near that exciting or that cool.

I just ran today and recently have been using a heart rate monitor. I know how fast I can push the pace based upon my heart rate (aerobic, anaerobic, fat burning, max heart rate, etc). Without a heart how are you able to gauge was a safe pace is? Now that you have a new heart what is your resting heart rate?

The artificial heart is set at 135 constant. The fill volumes increase slightly during exertion but the difference is not noticeable.

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If I could talk to your dad I would tell him that time is the only thing that is going to lessen that feeling. I remember that despair when I was in recovery, I remember feeling that nothing would ever be good again, I remember thinking that the best thing I could do for my family would be to quietly pass away so they could move on with their lives and get over me. I remember thinking that my wife is still young and beautiful and could certainly find someone who would take care of her. I don't know what it was that brought me out of that other than time. Please tell your dad to hang in there and tell him I will be praying for him.

I've had rheumatic fever before and this scares the mess out of me. How did you know you had it again? When you said you became symptomatic again what does that mean?

Loss of appetite, loss of energy, inability to do normal tasks, loss of interest in activities that I usually enjoy.

Were there other options than the Syncardia Artificial Heart? For example, would you ever have considered Xenotransplantation (http://en.wikipedia.org/wiki/Xenotransplantation) or other such methods?

Great job on the run by the way, its great to hear you don't have to completely put your life on hold

At the time I received it I was out of options, my heart had stopped several times and had to be restarted by a defibrillator. I had looked into stem cell therapy and was trying to get into studies at several different universities that had approved me for study treatment but for whatever reason never actually came through. I talked to several programs abroad for stem cell treatment but the best that any of them could tell me was about 35% success in noticeable improvement and the kind of money that would take wasnt justified in my mind for that level of results (we were quoted between 25-40 grand for centers in Germany, Thailand, and Mexico.)

I have seen reports of cow hearts being "washed" of all genetic markers and seeded with human stem cells and I would definitely consider this possibility but I think it is still years away from practice.

What made you decide to take part in the run? Surely there is a large risk of something going wrong if you are exerting yourself?

Congrats though!

Yes there are risks, but I have been waiting for 5 years for a transplant and grew tired of waiting quite a while ago and decided I was going to do everything I could when I could. Since I have been unable to work I went back to school and completed all of the prerecs to be a nurse, I was supposed to start the actual nursing program in Jan of 2013 but was physically unable to attend school any longer but I do intend to return to finish my nursing degree and work with transplant patients in the future.

Firstly Tinman, you, your wife and your family are true inspirations. My question: When you first woke up with the SynCardia Heart in place - what were your thoughts?

Well the surgery was very traumatic on my body, my heart had digressed much further than the doctors realized because I was young and active and otherwise healthy, I was in a coma for 8 days following surgery and came around very slowly. My first thoughts that I can remember were wondering if I was alive or dead, I couldnt move or open my eyes and was on a medical air mattress so I felt the sensation of floating and thought I must have died. I remember looking around in my mind to see if my dad was there, wondering if he was coming to meet me. I went through a period of time where I thought I had been shot in a war and worried that my wife might not know I was ok and still alive. I was intubated and under influence of some heavy pain killers so trying to communicate that I was looking for my wife to the nurses was probably comical but I missed out on the laughs of it.

How long can the Syncardia remain as your working heart before that needs to be replaced as well? Do they have an estimate (although I know hard to give) as to how long you'll be on the transplant list?

Since there are no biological markers in the artificial heart there are no issues with rejection. The longest I am aware that someone has lived on one is just over 4 years.

Body size and blood type are two of the important things that go into finding the right match, I am 6-3 and over 200 pounds so that limits my potential donor pool, I am also a blood type O, which is the hardest to match. And as I keep telling my doctors, I would rather get the right heart than the next heart.

How did not having a heart limit your activity? could you at least get out of bed and move around your room?

When my failing heart was removed it was replaced by the artificial heart. The top picture shows me connected to the original driver which is slightly larger than a washing machine and weighs over 400 pounds so my mobility on that was limited to as long as my hoses would reach. Once I became stable that driver was replaced by one that is much more mobile and carried in a backpack.

Can you please post a verification picture of yourself with a dated note? Thanks.

How is this?

http://imgur.com/p2Zr1dC

Why run?

In the words of my ultimate hero, "You gotta keep on keepin on. Life's a garden, dig it."

In all honesty though, there are so many things outside of my control and I feel powerless sometimes, this was a way for me to take back some of that control and do something that nobody expected of me, to show myself that I could do it and hopefully inspire somebody else who may be having a tough time to reach beyond what they think they are capable of.

unreal. how long will the artificial heart last? when do you expect to get a transplant? do they tell you where you are on the list? (sorry if this is a repeat question)

The heart will last indefinitely but is only considered a bridge to transplant, the longest I am aware of someone on one is 4 years. Due to various issues of compatibility, body size and blood type, I could wait another week or month or year. Everything is divided up geographically, for my size and type I was number one in Az, Nevada, Utah, and New Mexico, and number 14 in Los Angeles, which is where you want to be really high on the list because so many more hearts become available in that geographic area. Since I have left the hospital my status dropped from 1a to 1b, so I went from critical high priority to stable medium priority.

I'm a doctor-in-training. My only question is: Aren't you scared? How could you run 4 miles with an artificial heart? (I have no experience with heart transplant)

I got over being scared a while ago and decided to do everything that I can now instead of waiting for things to get better.

Hey, I know I'm really late to this AMA, but I'm very curious: how does it feel to run without a heart?

When I run my heart is pounding in my chest. It can be painful if I push myself too hard. Can you put into words what that experience is like?

As I was doing the run I kept thinking that if I just pushed through and didn't stop I would be ok, but between mile 2 and 3 there was a pretty long incline and about 3/4 of the way up that I was gasping and getting light headed, my wife tried to reason with me to stop for a rest and I wanted to keep going. She finally got rather forceful with me and I relented and leaned against a pole for a bit to catch my breath.

question: are you Samuil Petrovitch? Do you live in the London Metrozone? Are you best buds with a strong AI?

Can neither confirm nor deny human.

So does it just need to be replaced after 4-5 years? Or do other complications occur that require a biological heart transplant?

It is only meant to be temporary and is classified as a "bridge to transplant."

Do you ever feel changes in your emotions? Like some people say you feel from the heart but of course scientifically the brain does all of the emotional crap. Do you think there might be truth to the old wives tales?

I don't think there is a big difference in my emotional state, one of the things about a heart transplant is they cut the vega nerve that leads to the heart and many of your peripheral senses are affected by that.