My short bio: I had two bouts of rheumatic fever as a kid, necessitating open heart surgery at 17, lived a normal and active life for the next 18 years playing sports and working construction, ran my own business as a plumbing contractor, became symptomatic again about 5 years ago and was told I need a heart transplant. On June 20, 2013 my native heart was removed from my chest and replaced with a Syncardia Total Artificial Heart.

My Proof:

http://imgur.com/ilssR34

http://www.syncardia.com/2014-press-releases/man-without-a-human-heart-completes-42-mile-run/itemid-1658.html

Comments: 939 • Responses: 62  • Date: 

plumbob875 karma

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

Sw4rmlord76 karma

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.

Tinman556260 karma

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

cliuhur363 karma

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?

Tinman556562 karma

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.

Crimsonial147 karma

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.

Tinman55657 karma

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

vadarpoo328 karma

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

Tinman556554 karma

Can confirm, am a robot.

marioferpa181 karma

How did you pass through the captcha?

Tinman556255 karma

You humans have no idea how advanced we are.

sjturner15138 karma

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

Tinman556388 karma

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.

bannibunny169 karma

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

Tinman556255 karma

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.

IBleedTeal168 karma

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

Tinman556344 karma

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.

codered6952684 karma

I bet it goes like this

Tinman556114 karma

It is exactly like that.

IBleedTeal104 karma

Do you mind describing what it feels like?

Tinman556268 karma

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.

IBleedTeal89 karma

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.

Tinman556277 karma

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.)

teefour47 karma

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.

Tinman55648 karma

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

princethegrymreaper37 karma

[deleted]

Tinman55680 karma

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.

daniell6118 karma

stupid question.

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

Tinman55663 karma

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.

mrussell48135 karma

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?

Tinman556218 karma

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.

FlopMyNuts109 karma

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?

Tinman556165 karma

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.

kotoandjuri36 karma

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

Tinman55680 karma

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.

sirderpingtonthe8th99 karma

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

Tinman556161 karma

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.

The1NamedMarc48 karma

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.

Tinman55659 karma

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.

Pesqueeb94 karma

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.

Tinman55646 karma

Thank you and props to you.

Gesnaught62 karma

How's the sex?

Tinman556163 karma

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

LJandEo58 karma

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

Tinman55669 karma

BostonUrbEx56 karma

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!).

Tinman556111 karma

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.

Indylicious58 karma

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.

Tinman556167 karma

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.

originalname3255 karma

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.

Tinman55671 karma

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

NaNoFailure44 karma

Do you have a pulse?

Tinman55669 karma

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.

limewithtwist29 karma

does the rate increase when you run/exercise?

Tinman55680 karma

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.

salt-the-skies17 karma

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?

Tinman55612 karma

Yes to what Cactus said, fatigue and light headedness.

InterruptingPumpkin41 karma

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

Tinman556157 karma

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.

smashbrawlguy33 karma

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.

Tinman55673 karma

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.

superdooperdumper32 karma

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...

Tinman5566 karma

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.

bannibunny30 karma

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

Tinman55637 karma

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.

invisible3929 karma

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

Tinman55645 karma

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

manbroken13 karma

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

Both are completely honorable reasons btw.

Tinman55614 karma

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

rebelplum28 karma

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.

Tinman55640 karma

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.

joeytman27 karma

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?

Tinman55642 karma

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.

bannibunny24 karma

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?

Tinman55652 karma

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.

MoonSpellsPink29 karma

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.

Tinman5567 karma

Thank you for your selfless gift.

AnisRaider21 karma

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?

Tinman55627 karma

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.

Learuis19 karma

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?

Tinman55610 karma

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.

axonaxon16 karma

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

Tinman55637 karma

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.

archenturon16 karma

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)?

Tinman55625 karma

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.)

tnorts15 karma

does it feel any different than having a real heart?

Tinman55637 karma

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.

KingOfKerfuffle15 karma

What is it made of? How does it function?

Tinman55639 karma

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

Superhero_skyscraper15 karma

Are you a real life Chev Chelios?

Tinman55615 karma

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

jordancore14 karma

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?

Tinman55610 karma

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

smallcloud13 karma

[deleted]

Tinman55621 karma

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.

dawndaevil11 karma

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

Tinman55626 karma

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.

FreeToasty11 karma

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?

Tinman5565 karma

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

dbdummy9 karma

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?

Tinman5568 karma

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.

alfie889 karma

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!

Tinman55636 karma

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.

TK-Chubs1188 karma

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

Tinman55614 karma

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.

bannibunny8 karma

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?

Tinman55625 karma

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.

KennyLog-in6 karma

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

Tinman55612 karma

wipeout-1054 karma

Why run?

Tinman55613 karma

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.

jdowney19823 karma

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)

Tinman5569 karma

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.

mechanicalhuman3 karma

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)

Tinman5565 karma

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.

Zantozuken3 karma

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?

Tinman55614 karma

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.

anthemisofantioch2 karma

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

Tinman5563 karma

Can neither confirm nor deny human.

OsmosisJonesLoL2 karma

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

Tinman5563 karma

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

somewittyusername922 karma

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?

Tinman5565 karma

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.