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IAmA the 43 year old terminally ill husband and father, back with great news!
This AMA was well received: http://www.reddit.com/r/IAmA/comments/uta5q/iama_terminally_ill_43_year_old_husband_and/
Yesterday I saw my ICD nurse and a doctor who had assessed the information from my last discharge and found something interesting. I explained this in the AMA, but I'll outline it again here. The heart goes through several waves as it completes a single beat, illustrated here: http://en.wikipedia.org/wiki/Heart_rhythm. The peaks are represented by letters: P, Q, R, S, and T. When I first diagnosed and my ICD implanted, I only really had an R point. The rest were just little mumbles because my heart was so weak. But what they discovered is that my heart has gotten so strong, that the T point had gotten high enough that the ICD was counting it as another R wave, effectively double counting my heartbeats. Instead of 176 beats a minute, it thought my heart was in v-fib at 352 beats a minute, and would deliver a shock to reset, or cardiovert, my heart. It ended up that I never...needed...shocked...at all. Which sucks, because it frigging hurts!
So my heart had a software bug. The ICD nurse and a cardiologist logged into my heart using a wireless device, pictured here: http://imgur.com/9B9vM (St. Jude Medical makes my ICD). They programmed my ICD to ignore 200 milliseconds after it sees an R point, so it doesn't pay attention to the T, and counts the next R. They also set it to "capture" my heart when it exceeds 180 beats a minute. When it happens, my pacemaker will start pacing my heart at 190 beats (it is...uncomfortable, like suddenly being anxious about something) then start marching my heart rate down to a safe level.
End result: I should never be shocked again, and my heart maaay be twice as strong as we thought. I have a couple of tests, an echocardiogram and a nuclear (or nucular. Nucular) scan scheduled for later this week to ascertain if my heart is stronger, and if so, exactly how much stronger.
Dying guy no die no more? Maybe! My family is ecstatic. I am ecstatic. I hope you are all ecstatic, too. I hope that this fills your day with hope and possibility the way it has filled mine.
Edit: I've tried to keep up all day, but I'm worn out. I'll probably check in later tonight, but for now I've got to go and rest. Thanks, everybody. Again, everyone's been really great.
Edit 2, The Return: I got back on for a while, tried to answer everyone, got really tired, going to bed. Starting to take the downvoting personally, but I've been told it's a bot. If I didn't answer you, it's because you got lost in the crush, not because I didn't want to take the time personally to thank you for your kind words and wishes. I'm glad that so many people have taken hope, solace, or inspiration from what is, to me, just trying to stay alive. As always, Reddit, you folks have been really gracious and kind and have given me so much love and support, it makes me cry. Good night.
Edit the Third, the Search for Spock: I've been kind of goofing around off and on this morning. I'm sorry if I haven't messaged you personally, but I can only write "Thank you" so many times before my hand turns into a claw. So if you posted to just say thank you, I want to say it back. You guys all took time out of your day to say a few kind words and deserve to be acknowledged for it. I will be going through all the PM's shortly to make sure I did get them all.
Edit 4, The Voyage Home: Today are the tests to determine if my heart function has improved. I should hear either immediately (the techs like me and tell me if things are good before the formal results come back) or tomorrow. I will update everyone.
Edit 5, The Final: I have just gotten the test results back and will put them up in...the final post I'll be making on this account. I just have some friends and family to talk to about this first. I'm sorry.
[deleted]1223 karma
Shh, Death might hear you...I don't know if we're breaking up quite yet.
[deleted]509 karma
It sounds like you guys are going on a break at least, keep strong good sir!
Xeeker205 karma
rinse and repeat.
For people not getting it: Reddit Enhancement Suite allows you to navigate comments with the keyboard.
A = upvote
J = next comment
AJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJAJA... = upvotes all around
chappe343 karma
A day may come when the courage of men fails, when we forsake our friends and break all bonds of fellowship, but it is not this day. An hour of woes and shattered shields, when the age of men comes crashing down! But it is not this day! THIS DAY, WE FIGHT! By all that you hold dear on this good Earth, I bid you stand, Men of the West!
Point: Fuck shit, fight to live another day.
seamachine441 karma
I want your doctor to say "We can build him. We have the technology." Congrats, btw!
[deleted]230 karma
And it only took a laptop and what I thought was a bottle opener. Thanks!
rewqrewqrewq310 karma
"The ICD nurse and a cardiologist logged into my heart"
Can I just say that this is nuts? As for the news, congratulations. I hope your upcoming tests are all equally as good.
[deleted]239 karma
How do you think I felt repeating the phrase "My heart...has a bug. There is a programming error...in my heart."
[deleted]109 karma
They probably never thought about it. Making the device smart enough to alter itself to reflect a better rhythm was never considered, I think.
CancerEffinSucks45 karma
That's not acceptable for a bug IMO. This isn't a gaming device...it's a medical device for his heart. Are you comfortable with them not finding any and every bug considering what it's used for? I'm not and I'm willing to bet that you wouldn't either if you or somebody close had the problem.
[deleted]109 karma
I'm very forgiving about it because of what could have happened. I understand that while being a very sophisticated device, it has limits in functionality due to size. I'm just happy that the problem was figured out, that it was corrected, and maybe no one else will have to deal with it.
[deleted]138 karma
I do feel awesome. I actually am having some chest pain, because of how excited I am. All this time, I believed my entire heart was getting weaker. That it was dying and, if I was lucky, might get replaced, which I was terrified of. Instead, because of a mechanical error, I should never have gotten electrocuted three times in a month and might be getting better??? It's answered prayers.
[deleted]169 karma
I really thought so. My wife and I celebrated my not getting shocked accidentally again....well into the evening. We invoked God's name on several occasions.
songwind62 karma
Anything that gets you extra... religious experiences... is okay in my book. :)
defaultconstructor64 karma
I checked Hallmark for any "I'm happy you're not getting shocked accidentally again!" cards, but they don't have any in stock :( Instead, I leave you this comment!
[deleted]107 karma
They're in the religious section next to "You should never have blasphemed, it's why you were struck by lightning right then."
songwind156 karma
That's amazing news! Congratulations on your improvement, on finding out one of your uncomfortable experiences is going to go away or become less, and the possibility of longer life thereby.
Also, "cardiologist logged into my heart using a wireless device" may be the coolest phrase in the English language after "bacon for dinner." I love living in the future.
[deleted]64 karma
Thank you....that kind of coolness comes with being a cyborg. Or "enhanced human" as I prefer to be called. I tried to get them to program in a way to manually accelerate my endocrine system, give me massive strength...no dice.
songwind35 karma
You're old enough to remember, so...
Do you ever "DAH-da-da-da-da-da-da" when you start doing anything physical, a la The Six Million Dollar Man?
[deleted]38 karma
When I pick stuff up, I sometimes go "ching ching ching ching" kids have no clue. None. Even when I try to show them Kevin Smiths new SMDM comic.
blueprintlove105 karma
Technology is your best friend~! Congratulations, man, I'm glad everything is better than expected.
Make sure to give your nurse and doctor great big thank yous for figuring that out. (:
[deleted]93 karma
They were pretty proud of themselves for figuring it out. I was trying to get them to add some apps to my ICD, maybe play MP3's, give me turn-by-turn directions. No luck.
crunchenticker66 karma
Charge it, point it, zoom it, press it,
Snap it, work it, quick - erase it,
Write it, cut it, paste it, save it,
Load it, check it, quick - rewrite it
Monotone_Robot97 karma
This made my day. My wife is due in 7 weeks and seeing your previous AMA conjured to mind a slew of sad possible outcomes and uncertainty about my own future. Seeing a good-news update has boosted my own confidence. I'm very happy you'll continue to be around for your family, as I hope to be for mine.
[deleted]40 karma
If its your first, you have many, many more panic attacks to come. Don't worry, in a few years you won't mind if the kid juggles chainsaws.
[deleted]58 karma
Yes, I do, Jello. It is great. My face hasn't stopped hurting from smiling so much over the last 24 hours or so.
[deleted]14 karma
Well don't go and die from facial cramps or something silly after all this...moderation man...even smiles!
SchmakerGodt75 karma
I had a bad day.
This made me happier. I'm really happy for you and wish you and your family all the best!
[deleted]56 karma
Uh, thank you? Since the first time it went off while we were...in relations, she "closed the candy shop." We had this discussion on the way to the ER. Me: "Honey, you cannot blame yourself for this. Because if you do, I will never have sex again. And I really, really like sex!" So, it was nice to see local businesses opening their doors. So to speak. Metaphorically.
Monotone_Robot30 karma
So to speak. Metaphorically.
Say no more, say no more, say no more! A nudge is as good as a wink to a blind bat, eh?
Speed_Bump22 karma
I know what you mean. When I was leaving the hospital after my heart attack last month my wife's only question about restrictions was "Is having sex OK?" :) I told her if I could handle it with multiple fractures in my pelvis a few years ago I did not think this would be a problem.
[deleted]28 karma
"I'm telling you I need this thing to happen, so it's going to happen." I love paraphrasing Tony Soprano.
ss_00756 karma
As a 24 y/o with something wrong with his heart, I AM VERY HAPPY you have been given outstanding news. I hope you continue to get stronger!!!!
[deleted]41 karma
Thank you. It was because I followed my instructions, took my meds religiously, and did what they told me, which was nothing. It's been a long 5 1/2 years. If any of those things can help you, please do them. I'm proof that occasionally, doctors do know what they're doing, despite my wife's assertion that it's nurses who do all the thinking (she's a nursing student)
Mikuro55 karma
logged into my heart using a wireless device
brb, writing hit love song...
[deleted]33 karma
I don't care what Klingons say...I really don't think there IS a good one.
jakrojan52 karma
Holy shit. I didn't comment on your previous AMA as I was feeling a little down, but fuck man. THIS MADE ME FUCKING HAPPY
AG92351 karma
I get the paddles once a year for a-fib at least so I hear you man. Also they wanted to put an ICD in me but it sounded like they were trying to sell me a car more then prevent failure, such a risky device to have implanted! Glad otherwise to hear your improving! Stay positive, and Cheers!
[deleted]47 karma
Please, consider the ICD. It's like having a paramedic in your chest. I've had mine for over five years and it's only gone off three times. Agreed, they were mistakes, but if there's any chance it could save your life...please just think about it. They were only trying to sell you on it because it's a great idea. Especially if you're needing shocked once a year.
[deleted]27 karma
Thanks. We are all very happy, and hopefully, just hopefully, we will be relieved later on.
BiometricsGuy43 karma
Was it really a programming bug? Sound like a configuration bug to me - the docs just didn't configure it correctly for your particular rhythm. I don't know much about heart rhythms, but I would think a measured rate of 352 bpm would be considered a sensor error by the software.
Does it hurt when it shocks your heart? I'm in EMT training right now and we are practicing on defibrilators, and I was wondering what they feel like.
[deleted]21 karma
It may have been a configuration bug. I thought it might be a programming bug in that it took a baseline reading of my heart when it was first turned on, but the programming is so limited that when my heart improves, it can't recognize it as a regular rhythm?
Being shocked is exactly what you would think. It's like touching a very large battery, only the battery is inside your chest. You convulse, you blink a couple times, once it went all the way down my left arm, up into my jaw, there's a loud snap as it arcs, and things immediately start hurting. My jaw has snapped shut so quick, I was afraid I bit my tongue.
OrangeCloud16 karma
that sounds very painful and annoying. Sorry you had to go through it so many times. I don't know how it is but Its scary even when you describe it. I hope you don't have to do it anymore.
[deleted]23 karma
Me, too. The last time I was folding towels when it went off. I hit the floor, cursed like a sailor, and waited to see if it was going to go off again. Then I got up and went to the hospital. It feels like being in a car wreck for a while. Chest hurts, muscles ache. They gave me two whole Tylenol for the pain. Thank God I had Vicodin in my pocket (in my official House fan club container!)
Maple_D41 karma
As for the Nuclear Scan, are you having a procedure called a MUGA/Ventriculography study? Or perhaps a myocardial perfusion test? Regardless, If you have any questions, I'd be happy to answer them because I actually perform these studies. Good to hear things are looking up!
[deleted]21 karma
They said I would be injected with a radioactive tracer of some kind and then lie still while something spun around me? And to not go near pregnant women for 24 hours. I can't remember the name. Myocardial perfusion sounds familiar, but I watch a lot of House.
[deleted]23 karma
Non-ischemic dilated cardiomyopathy. My left ventricle enlarged itself due to viral damage and could only pump 10% of its blood.
nybo37 karma
They logged onto your heart o:?
Congratz dude i read your AMA and i got really happy when i saw this post, prolly not as happy as you got, but still happy ^ now you'll have a chance to take your kids to the JoCo cruise (:
Also what were your first thoughts when they said they were going to log onto your heart?
Sam_Kablam36 karma
"So my heart had a software bug. The ICD nurse and a cardiologist logged into my heart using a wireless device... They programmed my ICD to ignore 200 milliseconds after it sees an R point, so it doesn't pay attention to the T, and counts the next R."
Holy technology! I thought we hadn't reached the age of cyborgs yet! Glad to read the good news!
[deleted]26 karma
It's true, but now Skynet wants me to find someone named...Sarah Conner? I don't know who that is.
socialclash32 karma
/does happy dance for you.
Dude, that is absolutely AWESOME. The human body is an AMAZING thing, and I'm so glad that the combination of biology and medical technology innovation has led to this for you!!!!
[deleted]15 karma
And pharmacology. I'm a big believer in better living through all kinds of pharmacology.
F-That30 karma
My mother-in-law went into cardiac arrest and now is the owner of an ICD. They are pretty amazing little pieces of equipment. She has a wireless unit that sits on her nightstand and updates her doctor nightly about how her heart is doing. I guess really it will only send a signal or make a call if something bad happens.
Fucking science man. Amazing..... I wish you the best.
[deleted]31 karma
Mine, being five years old (only frigging five!) is obsolete and considered huge now. My device to download its information works on...no shit...dial-up.
flifcat24 karma
Does it make me a bad person that hard on the heels of "Yay! Living!" came "Right, now I really want an update from the two redditors who got married after one of them posted a 'marry me plz for financial aid reasons' post and then did an IAmA together saying they super-clicked".
ceruleanpineapple11 karma
I don't know which rock I've been under, but I heard nothing about this. Do you have a link to the AMA?
flifcat9 karma
The account was deleted, but FWIW here's the link
[deleted]15 karma
I hope this is the case! I hate seeing people give up, even when doing so is probably the best option. I'm glad to hear this!
FuckSitter1722 karma
HELL YEA FUCK DYING! LIVE ON YOU GREAT STRONG HEART GUY!
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