IAmA terminally ill 43 year old husband and father. Yesterday, I floated the idea of letting me go. Everyone freaked the F out. AMA

This user has verified he has received treatment for cardiac problems this week and prescribed many medicines for heart failure.

Thank you, mod KennyLog-in. Great username BTW

Why can't they fix you? :(

The best fix would be to put a new heart in. And that has it's own risks and rewards. And has not been offered as an option yet.

You stated that your heart problem started with a virus. Would the virus still be active and therefore damage/destroy any new heart from a transplant?

If he has dilated cardiomyopathy (DCM) resulting from a viral illness, it would not be expected to recur in the transplant.

OP: I'd humbly advise that you consult a heart failure specialist at an academic center if you've not done so already. You're too young to not investigate all your options.

I did read it, and I have taken heed of it. I will be talking to my cardiologist this week, along with my ICD specialist. They think there may be a problem with my defibrillator. We're going to check it.

With todays technology I bet you could get an artifical heart. I'm not up on todays organ tech though.

Do some research on it!

My kids listen to Jonathan Coulton all the time, and whenever they play "Artificial Heart" on the iPod, they say "It's your song, Daddy!" Actually, it looks like stem cells may be the future. They're beginning to program cells to become cardiac tissue and replace damaged or dead heart cells. That's the thing I would like to try.

When I was in college I attended a relay for life event, one girl there was on the list for a heart transplant because chemo destroyed her heart, but she had not in remission long enough to be allowed a new heart so she wore a backpack that pumped her blood for her. You could investigate that option until a heart transplant option becomes available and have plenty of time with your children in the future.

Dick Cheney's artificial heart devices were all contained in his vest. The technology has improved.

He had a heart?

No. But they gave him one.
Science is just that awesome.

I supposedly developed congestive heart failure from a virus (at least that is what they theorized). I had pneumonia three times during a period of about 1.5 months which finally resulted in a 2 week stay in the hospital over Christmas '09, possibly because of fluid buildup in the lungs from the congestive heart failure. I guess I was lucky because I'm doing a lot better now. The local hospital wasn't doing a good job with the medicine cocktail and had me overdosed basically. I finally went to Vanderbilt and they got me on the right medicines and whatnot.

Anyway, these types of problems always get my interest now and I was reading an article about a man who had his heart replaced with essentially a pump that runs continuously. He obviously had no heartbeat, but seemed to be more or less ok. The article was talking about this as some new technology and how it was a success. I don't know any more details about it, but you might look into that. I'd take a username of Bionic_Man or Cyborg_Heart over thatduyingguy any day of the week.

Since I had my pacemaker and ICD implanted, I prefer the term "enhanced human." I could power the Iron Man suit, but not for very long.

I have to admit that I feel really bad for you, but I love the humor you've put into some of these replies. Also, I know it doesn't mean much here on reddit but, god bless.

Ha! Yes, you've come into the dragon's den and invoked the name of the Creator! Downvote him! Cast him into the fiery pit of downvotes. Seriously, thank you. I try to inject humor into every possible situation. Sometimes it's rejected and most times it's inappropriate, but I keep swinging.

Have you asked about it?

Yes. They say I'm not sick enough yet to get on a list. And even though I'm really freaking sick, there are people sicker than I. And not nearly enough hearts to go around. So become an organ donor people! The life you save might be mine!!

Organ donor here. I wish you the best and should I pass before my time I'd hope you get my squishy parts. It was a great choice to become a donor. I'm glad that I can be of use after my time. Or even before. I'm on the bone marrow list and am starting to donate blood.

THAT...is a beautiful thing.

No one's ever said that about it before. Thank you. You brought a smile to my face. :)

Good, you should be proud. Not a lot of people go very far to share themselves and save lives. Good on you for doing so.

If your in the UK registering is as easy as filling out an online form, so go do it right now, seriously, there's no excuse not to.

Ive just done mine.

http://www.organdonation.nhs.uk/ukt/default.asp

In Croatia everyone is donor by law unless he or she formaly ask not to be.

I've always wondered what it would take take change it to opt-out in the US.

Why would anybody do something like that? I can't think of any reason that I would. After I'm dead, I won't need my body. But there are so many people whose lives it could save...

It's not about when you die really. Even if you are not an organ donor, when you die they will still ask your family. As a emt, I was once told this... if triage is necessary, those who are dying but not donors take priority of donors. It really stuck w me how unfair that was.

I'm not a fan of more laws but people should have to opt OUT of organ donation. I'd support that law.

That's a great idea. Never heard of it before, but have it like implied consent? Sure. I'd vote for that.

I have often thought of visiting the pearly gates to heaven, and St. Peter asks you one question to get you in. Were you a donor?

Excellent. When I was young, teen young, I thought I would never want to donate my organs. Now, I wonder how I ever thought that was a good idea.

I've been a donor ever since I got my license at 16. It always just made sense to me. I don't need them once I'm dead, why not help someone who does?

Exactly. Thank you.

I agree, great user name.

Two thumbs up.

Hi there...

If I can also offer perspective from a child who lost her daddy, My last year of my second degree my father was diagnosed with stage V cancer of the esophagus and stomach. I can remember growing up watching him chew tums to deal with heartburn, but he was too stubborn to go to a doctor. Had he gone to a doctor, it may have been prevented, so the first thing I want to say is please don't ever be stubborn about going to the doctor for anything!

But specifically to you, a dying father, I want to say this. I forgave my dad for not going to the doctor earlier. I was never angry with him about being sick. I never once felt he had let me down, even though he felt he had. He had been the best father anyone could ask for my entire life, and that outweighed anything to do with his illness. He did have surgery when he was diagnosed even though we all knew it was only to potentially buy some time. It would either kill him right there, and it almost did, or it would give him a few more months. We took those few months it did give him and did everything that was important to us as a family. We spent Christmas together for the first time in a decade, because traditionally it was his busiest time at work, and there was no point in me visiting. He took his RV and went with my stepmother to their favorite camping spots (Peggy's Cove, NS) and while he was there, he did all his favorite things.

When my father passed away on Halloween 2002, 1 year and 1 week after his surgery, my stepmother gave me a piece of blue beach glass. My father had walked on the beach for hours trying to find 3 identical pieces. One for him to be cremated with, one for my stepmother and one for me. I have been blessed to have many beautiful pieces of jewelry from my family, but that piece of beach glass is my most prized possession. My stepmother made it into a necklace, and I never take it off, even if it doesn't match the occasion. People ask me all the time about it, and when they do, I get to tell the story of my dad and the beach glass.

The last weekend my father was alive, he had been rushed to the hospital, and I immediately was on a train to see him. We spent 2 days talking about the silliest things, and just hanging out. Then, just before it was time for me to leave one night, he had the nurse come in. In front of me, he told her he did not want any more blood transfusions, which had been keeping him alive. He wanted to make sure his only daughter (and child) was there to see him make that decision. I understood.

Your children are not going to hate you for letting go. Yes, ideally I would have preferred my daddy to be around, but I understood that sometimes life is going to be cruel. I did not want to see him in pain, and I hated that feeling of dread every single time my phone rang when he was sick, knowing that the news on the other end could be bad. I miss him dearly, but there was also a sense of relief when he did pass away because I knew his suffering was over, and I also knew that I would never have to worry about getting that phone call again.

Days when I wish I could call my daddy, I hold my beach glass in my hand and talk to him. I hope there is an afterlife and he is hearing what I say, and I do believe he does. Ironically, the greatest gift he ever gave me was that piece of beach glass not the best education or the expensive stereo equipment because it is something that came from the depths of his heart as he faced his own mortality.

Write those letters like people have said because you are an amazing writer, but leave them each something like my tiny piece of blue beach glass, that way they can always have something from you with them.

That's a great idea. I buy them little earrings and necklaces and things for the boy, like a good knife, things to treasure as gifts from their father. But that blue beach glass trumps all of it.

Thank you..

If you want to let go, let go. They are going to have the same emotional reaction if you let go now or if you let go in 30 years. They are going to love you and remember you regardless, and it will hurt just as much no matter when it happens.

True.

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Thank you. I don't think I will, though. Between my family, and the strength that people here are sending me, I don't think I will let go. It's been really, really nice to talk to people on here.

Do you feel fulfilled in life? And what has been your greatest accomplishment?

I was a 9-1-1 Telecommunicator for over 15 years. I posted an IAmA on it under the throwaway "whatisyouremergency." My work in my career is a great accomplishment, and testament, I believe, to my earning the right to decide when I die. I've saved enough lives. But, as trite and cliched as it sounds, my children are my greatest accomplishment. My eldest daughter is hyper-intelligent, like me. She tried out for Jeopardy last winter and just made it into the Talented and Gifted program I was in when I went to school. And at a younger age than I did. At 11 years old, her IQ is 126. She is a very, very smart little girl and I am proudest of being her father and the father to my other two children who are just as bright, if less motivated lol

Thats great, I am very happy for you, follow-up: Why don't you want to fight with all of your power to live? Don't you want to see your children grow up? Meet your possible grandchildren etc

That...is the only thing I don't have an answer for, and why I'm relenting...for now. I have two daughters, 11 and 10. My aim during this entire struggle, has been to walk them down the aisle at their weddings, if they choose to get married, or to watch them graduate from college, which they are going to do. That's not a negotiable item. But when you're in the hospital. And it's 4am and they're not letting you sleep because when you do, your heart is throwing bad rhythms or they need blood, or they're taking your vitals, your life shrinks down to: Do I want this to keep happening, as it has for years, and probably will for years to come? And increasingly my answer has been Dear God, no. I just want to rest. I just want to let go. And be let go, and have people understand my decision.

Hey man, this is a really stupid thing to say and you've got a lot of things on your mind I'm sure, but...

I'm a 24 year old dude who is "pretty smart", I guess. Straight A's, blah blah blah. Coming out of highschool there were.. a lot of expectations about where I should go and what I should do from my family.

I ended up not really meeting a lot of those expectations for my own reasons. I wanted time off, time to do my own thing and figure out who I am and what I was doing with myself. My family was.. disappointed. Really disappointed. I was supposed to go to school. I was supposed to make something of myself. I heard that a lot.

But... what I needed from myself was to be able to go figure out who I was and what I wanted, and my family understood that, eventually.

After a couple years, I ended up settling down and finding a college I liked where I could learn to do something I loved - but if I'd decided not to go to college, that would have been okay, too. I'm a cool dude and I'm gonna cut it wherever I go, you know?

But... I guess I'm just posting this because I could talk it out. My mom is here to talk to me, and say "you know, I won't be disappointed in you if you decide not to go to college, I'll be proud of you no matter what"... And I think about how awful I would have felt, and how much pressure I would have been under to choose college, if my mom hadn't been able to say that to me, and tell me that no matter what I did, she was proud and loved me and would always support me and believe in me.

I totally support your right to rest, and I can understand just being.. done with everything, I guess. You have the right to be finished whenever you'd like to be finished. But please, remember, nobody gets to come say in ten years "hey dad, I know you always said X... but I think I really want to do Y.. that's okay, right? You love me anyway, right?"

There's a difference between supporting your kids and pressuring them to take the path you think is best... and you don't get to fix this one later if you decide to be all done now.

Anyway, sorry, you're a lot more experienced than I am at this stuff and I'm just a kid, really, but I hope I made sense, at least. :)

I burned out for a period in college. There were some who said my parents put too much pressure on me, that I was trying too hard to please them, and I quit. And I've regretted that every day of my life. If I could have just been more comfortable, it would have been different. I don't ever want my kids to have that feeling. I've experienced it. I know they're going to be fine. They're good and smart and have great hearts. Whatever they decide, they will be successful. But education is paramount. If you don't know the questions, you don't know the answers. Knowledge and wisdom teach you to ask the right questions. That's what I try to impress on them. My daughter asked to be put into the Gifted program. I didn't mention it and was not pressuring her. I support their wishes as much as I can.

As a father, I want to say that we don't just get to decide to have children. We also decide, at the time of conception, that we promise to stay around as long as we can, as if that is now our new purpose in life, to teach our kids and at the same time, learn something of ourselves in the process. You signed up for the deluxe plan, man. You are tired and perhaps questioning the efforts you put in and you believe you force others to put in. I'm sorry but I don't think you get the die on your own timeline.

And that's exactly the path I've taken to this point: that I made a promise to my wife, and to my children, and to my parents that I would live a long and happy life, share and teach and love. But sometimes, the pain is just sooo great. And the loneliness soo intense. And the desperation soo severe, that you just want it to stop. Just. Stop. But you're right. It's no longer my life to live. It's ours. And that's how I've lived it to now. I'm just so very, very tired.

My father just recovered from colon cancer. He's so much better, but he still isn't 100%. And I still am terrified that he will not be able to walk me down the aisle, or see me buy a house, or meet my children.

I look at him sometimes and I can tell he's tired too. It took so much out of him to keep fighting. But I'm very glad he did. Because he got to see me graduate from college, and grad school, and get my first job. He got to meet the man who I think will someday be my husband. He got to see my little brother graduate from middle school. And I would have understood if he wanted to let go... but I am so, so happy for every day I get to spend with him.

Jeez, I didn't want to cry. You got me with that one.

We all get tired. Get some rest and get up tomorrow. I tell myself this everyday.

And that's been it. Well, when I put on my mask at night so I can breathe, I say "If I wake up tomorrow."

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Oh, shit. I didn't mean to do that, dude. I'm sorry.

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So, do you mean you want assisted suicide? Is that legal in your area?

No, I simply wish to change my legal medical wills and powers of attorney to reflect my wishes; changing them to Do Not Resuscitate, and to switch my defibrillator off, so that it doesn't go off trying to restart my heart. I don't wish to die, but I just don't want extraordinary measures taken in the event that I do.

How long do you have, do you think?

I don't know, Emily. It could be today. It could be when I'm 100 years old. There is no way that anyone can predict when I die. I've outlived every projection. We're in uncharted territory. According to what my cardiologist told me, there should be a 96% chance that I have sudden cardiac death at any point during the day. But I keep rolling 7s.

Well, good for you. Anything left on your bucket list? Do you generally seem healthy or are you bed-ridden?

I am...it varies. Some days, I call them "bad heart days", I can barely do anything. I had a great week this week and went to the beach in Delaware. I exhausted myself, ate all the wrong things, drank all the wrong things, got caught in DC rush hour and took seven hours driving home. When I tried to take some oxygen, it malfunctioned, and they believe the combination of dehydration, exhaustion, and anoxia caused the seizures. After I was given two bags of fluid, I pinked back up, stopped yelling things like "Get your paws off me, you damn dirty apes!" (true story, my wife told me after I regained my senses. I think it was hilarious.)

I'm just a little curious. My good friend in high school had random seizures (and we still don't know what caused them) one day during wrestling practice. He wasn't allowed to drive for 6 months after that. Are you allowed to drive in your condition? Or are you just saying "fuck it"?

I am not supposed to drive, as I would be legally responsible (and morally crushed) by any damage that I cause. It is believed to be a single incident, and as long as I don't allow this trifecta again, should not seize anymore, but I've been warned not to drive. I will occasionally fuck it and drive. I have to. I'm going crazy enough as it is. I don't think I will ever seize again.

Please don't drive. I ask you this as the son of a woman who has a closed brain injury- ironically enough, from an auto accident- who should not be driving but insists on doing so, despite the fact that she is incapable of multitasking and could easily cause an accident if she is distracted at a critical moment.

Even though I can't keep her off the road (inexplicably she is still legally permitted to drive), maybe I can convince someone else at risk not to get behind the wheel. If you in fact have a 96% of sudden cardiac death at any given moment, the only time you should be in a car is as a passenger.

I'm truly sorry about your condition, and understand the impulse to throw caution to the wind in the face of such a random bullshit fate you have suffered. Try to remember, however, that every time you drive you run the risk of inflicting an equally arbitrary amount of suffering on the world. That being said, I hope you find your peace- in whatever form it may come.

That being said, CONVINCE YOUR MOTHER TO STOP FUCKING DRIVING!!! She's going to kill someone and all your going to be able to do is start a new IAmA on reddit.

You can do this, it is YOUR DNR, legal papers, etc.

It is. But I love my family so much. I live my life for them, really. Everything I do is done for my family and for my wife. Yes, in the end it is my decision. But I'm a giver; I give until there is nothing left. I want to keep this one last part for myself, but they don't want me to. I don't think I could resist their wishes. I know it doesn't make sense, but that's my pathology.

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You're right. I have excellent medical insurance, but it only covers...a million dollars total. At around 10-12K a hospitalization, that's a long time...but if I need a heart transplant, we could be screwed. I don't want to saddle my family with debt. It is a consideration.

Do you have cardiomyopathy? A heart transplant could save your life and make you almost the way you were except for having to take lots of meds and get frequent checkups at first. I know how the tired gets because I have a severe chronic disease of my own. I am also a Nurse who worked in a CVICU with cardiac patients who got heart transplants. Once they got the transplant,they either flew or didn't but most did incredibly well. And those patients went from bedridden to up and around discharge to home with therapy in an amazingly short amount of time.(maybe a week to 10 days). Please have a serious discussion with your Doctor and family and discuss your options. You shouldn't have to suffer for someone else's sake but let them have some input too. Your doctor might offer some more options if he knows you feel like this. I really feel for you and I wish you the best.

Yes, dilated cardiomyopathy. And they tell me a transplant is not medically responsible right now because I could live a long time without one or a short time with one. If that makes any sense.

That doesn't sound right,maybe go to a large teaching hospital and get a second opinion. The teaching hospitals usually also have much more experience with difficult surgeries.

Sorry, my Internet dropped for a minute. I'm at a large teaching university. I have had three cardiologists and they all have the same opinion. Medication therapy, not transplant.

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Yes, true also. See the conundrum I have?

I watched a family member of a friend of mine's life fade away through ALS over years, he was healthy and very active before then. It looked like hell. I decided then that I wouldn't ever let anyone decide my quality of life, no matter how much I loved them, and I would consider their opinions but ultimately my life was my own to do with as I decide.

People who haven't faced death always think this sounds harsh, but they don't understand and never will until they truly understand the concept of mortality.

I understand exactly what you mean about being tired. I don't think you should have to suffer through the prison of your own failing body because people who love you want to hold on to whatever scrap of you is left.

All of that said, you sound like you really love your family. I don't have a family, and my extended family and I don't get along, so I could be colored by that. When I was facing a looming death, I chose not to tell anyone. I didn't want them to influence me. Would I have made difference choice in your position? I don't think so, but it's possible. I would rather die fast and let my loved ones heal sooner, than make them watch and suffer while I slowly die. I can't imagine many things worse to do to someone I love than make them suffer at my expense, especially in a misguided attempt to avoid a harsh reality by trying to hold on to whatever scrap of me was left.

In my experience, if you're trying to make a choice about whether you should do something or not, and it's only a choice between yes and no, you've already made your choice but haven't accepted it yet.

This is likely the last big choice you will ever make for yourself. Do you want your last answer to be "I don't know?"

Exactly. I would like to live to be 90 and sit on my porch yelling at kids to stop farting on my crops. But when I see my kids having to help me out of a pool, or people staring at my surgery scars...or having my wife help to bathe me because I'm just too...fucking...weak to do it myself, where's the benefit in that? They say they don't mind, that they're happy to do it, but they don't see the tear coming out of my eye as the last scraps of my dignity are being flushed down the toilet. I want them to be happy. My wife is the best person I have ever known. Is she the happiest having me, in whatever condition, as she insists? Or is she going to be happiest with her new husband, who will be handsome, active, and probably rich? My wife is quite hot. In the book of her life, do I want it to be a tragedy, where she is standing by my bedside, crying and holding my limp hand, or where she puts the awful past behind her and finds new love?

My husband killed himself last year after five years of a debilitating neurological disorder that the doctors never figured out on top of lifelong depression and Crohn's disease. I think dignity had a lot to do with his decision. He was incredibly frustrated by the fact that he needed to accept help from other people, particularly because he was an independent but sensitive guy and hated to feel like he was a burden on anyone.

Not an hour goes by that I don't miss him terribly and wish he were still here, sick or not. I'm dating again, but my entire life is different because of his absence.

Your situation's obviously different from my husband's; he did have a DNR, for instance, and I was totally on board with that. What I find myself wishing, still, is that he'd just involved me more in his decision-making process. I may not understand personally what it's like to be stuck in a body that's slowly becoming less and less functional, but I've watched it happen and I can understand why a person would want to be free of that kind of prison. But we lived an hour away from a country where assisted suicide is legal, and it was quietly known in the town we lived in that there was a doctor who would, if he felt the situation merited it and had been thought through, prescribe a lethal barbiturate cocktail. There were better options.

It's still pretty hard to sort through all the feels on this, but I think what I'm trying to say is that it's going to hurt your family a lot more if you make this decision without them. That doesn't mean "cave in to them," it means tell them what you're thinking about, and if you've made a decision, give them a heads-up about it. They are feeling isolated and helpless, for obvious reasons. Nothing about this is going to be easy, but the more you can communicate to them what you are thinking and feeling, the less difficult it will be.

This goes for your kids too, especially because they're smart. Smart kids' imaginations can come up with all kinds of ways to torment them about unanswered questions surrounding the death of a loved one.

edit: accidentally a word

I'm sorry he committed suicide. And probably gave you no warning he would do it, in order to spare you. Or think he was sparing you. I won't do that. Our situations are different, I think. His was debilitating and painful to even think about. Mine may be as simple as the lights go out getting off the toilet.

I believe communication is essential. I try to involve my family as much as I possibly can, and that's why I wanted to feel them out on where my head was, and after the reaction, retreated to my shell.

My dad committed suicide after a lifetime of depression. It made him mentally the way you are physically. It hurt me beyond what I could imagine pain could be like, I felt like he abandoned me (I was 36 at the time) and then I had an epiphany: WHy should he stay alive for me? Why should he endure pain because I don't want him to be gone from me? I miss him every day and think of all the things he taught me, and am glad for that time.

However... I am a 45 y/o mom of 3 girls, 18, 16, and 11. I would hate to have to make the decision you are faced with. Your girls are intelligent, and can probably empathize with your situation of not wanting to be sick anymore, and they deserve to be part of your decision making process. I am also a veterinarian, and NOTHING deserves to suffer. You have a tough decision, and ultimately it's yours. Best of luck. Thanks for sharing your story.

Depression...depression is insidious. You sometimes can't see it, but it's like a worm inside of an apple. It's gnawing away at someone. In their brain. All the time. I have had it in the past and I take a medication now that helps my mood a lot. But that dark little shadow is always in there working on you. I'm sorry your Dad had to suffer it. My daughter, Avery, wants to be a veterinarian. She will be an excellent one.

One from the other side.

My father's pain medication was making his life bearable until he was drug tested (positive for marijuana) and denied access to said medication. After this his life deteriorated into an excruciating ordeal. He lived like this for around six months, his mental state complicated by a broken heart.

He wanted to die. After he came to spend a week with me and barely got off the sofa, we said goodbye knowing we'd never see each other again.

He called me three times to tell me he was going to die. The first two times I told him (honestly) to go if he wanted to go. He said he could hear something in my voice that prevented him from going through with it.

The third time he called, I didn't answer. Two days later my grandmother called to tell me they found him in the bathtub (his favorite place in the world). It wasn't ruled a suicide, and to this day I'm the only person who believes it was. I hope it was. I hope he made that final decision himself.

Your children are probably too young for this realization...I was probably too young for it at 26. I didn't want to be the reason someone else lived in constant pain. I didn't want someone tortured on my behalf. I loved him more than that.

And I hope that they have that epiphany someday. I think they're just too young for it right now.

Believe me, if your wife is the person you say she is, she wants you alive. She wants you to live so you can raise your children together. Please don't say any of that stuff to her about her 'new husband', I think it would upset her very much. Please be positive!! Good luck to you, I hope you defy all the odds and recover from this condition.

I joke about it all the time. I don't know if she finds it funny or not. After being in emergency services as long as I was, you get a pretty dark sense of humor.

I dont know if you've seen Breaking Bad but this seems like a great time to become a drug lord =]

no but in all seriousness i wish you and your family the best. I can see how this can freak them out. I too would freak out if my husband just gave up =[

I would become a drug lord if I could find someone less annoying than Aaron Paul to be my partner. I want to strangle that kid and put him in a tub full of acid most of the time. :) Yes, I love Breaking Bad and I can see some parallels. Not a lot, though.

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I think there's a line from Greys Anatomy, and dear God I can't believe I'm saying this, but the line was "If love was enough, I would have stayed with you forever."

The fact is, sometimes the pain is soooo great. For soooo long. That you just cannot keep going. No matter who you love, or how much you love them. There comes a point when your heart and your mind agree that it's just...too...much.

It's really like being tortured. It doesn't matter how strong your love or your resolve. If you keep going long enough, you get worn down until there is nothing left. It isn't a situation where he's going to get better. It's just a matter of when he's going to die. And believe me, he doesn't want to go. Dear God, he doesn't want to go and leave you. But the pain, and the suffering. You just literally cannot keep going.

That was incredibly hard for me to type. I hope that it helps you understand what's going on for your Dad.

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My son is 17, and the girls are 11 and 10.

Your story is heartbreaking. I feel for you...my dad was murdered when I was 11 years old...write letters to your kids (multiple letters) that they can open periodically throughout their lives. They will miss you more than you can ever imagine for different and all the right reasons.

We...are much luckier than any murder victim. I survived that initial week. I've had 5 1/2 years to say goodbye. A murder victim never, ever gets that chance. They are stolen. And any family member of any victim of such a crime has my sympathy, now and forever. It's one of the many reasons I worked in the career I did. All the kids whose loved ones are stolen.

Please write the letters for future big events in life. I.E. wedding , graduation. If i lost my parents these would mean the world to me.

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My cousin was born with a genetic condition called Neurofibromatosis and he had Type 2. He's five years younger than me and struggled throughout his life to cope with his condition. He was blind in one eye at about 13, developed curvature of the spine at around 16, deaf in one ear by 18. This was all alongside developing tumours all over his body. He had countless operations to remove them, but some of them were tricky.

When he was 19, just after he finished his first year of uni, he collapsed and stopped breathing. They rushed him to hospital, performed an emergency tracheotomy, scanned him and found 3 brain tumours. They operated, but it went wrong. They damaged the part of his brain that controls the entire left side of his body. He woke up paralysed down that side of his body and told he had 3 months to live because of the other two tumours which they didn't attempt to operate on. Oh, and because of the tracheotomy, he couldn't speak or eat or drink. This was in August 2009.

He had always been a fighter and was desperate to still experience as much of life as he could. I spent the next year visiting him in hospital and helping him speak and drink again. Finally, in June 2010, he was allowed home.

Gradually, he started to improve and I then started taking him out in his wheelchair every weekend. We went to the cinema, we went drinking, we went greyhound racing, we went for fancy meals. He was happy again and started to become more of his old self, before he was left paralysed.

Whilst mentally he improved, physically he got worse. He lost more and more muscle mass and mobility in his right side, eventually he could only move his head. His meds were as high as they could be because he was in so much pain, his body started shutting down.

He went to the FA Cup Final on 5th May and had an absolute blast meeting celebrities, watching the football and having a wonderful day with his Dad and little brother. The next morning, they couldn't wake him. The doctor was called and managed to rouse him. He told my cousin that he needed to go to hospital or he would die.

At the age of 22, my cousin made the decision to end his life. My aunt and uncle tried to convince him, but he was always a stubborn bastard and he was resolute.

He died on Monday the 7th of May and the biggest comfort I had through the pain of losing him was that he wasn't in pain any more and I didn't have to watch him deteriorate any more. As someone who has watched a loved one suffer through a horrible illness and not being able to help, the greatest comfort was that he ended it on his terms. He regained that control.

My advice? End it on your terms. You might get lucky, you might not but at least it will be yours. You can't control the disease you have, but you can control how it is treated.

TL;DR: Watching someone you love who is terminally ill deteriorate is awful. Take control of your disease. It's YOUR disease and YOUR life.

Edit: Dates were off by a couple of days

Thanks for sharing that. It's a nice testament to his life.

Looking back, what little things made you the happiest?

I can see beauty in everything. I took a picture of the sunset the other night as I was driving home because it was so gorgeous. I find joy in something every day. I am not a sad person, generally. I am just tired. Bone weary. I love this world and this life, if only it weren't so damned hard to keep it. Maybe that's what makes me appreciate things like winning $3 on a Powerball ticket. Or seeing my kids go apeshit on a waterslide for the first time. Or just a really good pizza. I am an easy person to please.

That put a smile on my face.

Well, it's your cakeday! You earned it!

I have to say, despite your great intentions and dedication to your family, if you are ready to go, then it is time. Sit everyone down (maybe just your family, not sure how comfortable you would be with friends and family) and talk with them and tell them this is what you plan to do. Let them know that you are comfortable with death, how you feel, and of course how much you love them. If you wish to have control over how you are cared for, let them know. It's your life, and sadly, none of them will probably ever know what it's like to be you; I'd say that's for the better.

Anyways, best wishes to you, your family, and friends. My heart goes out to you.

I gotta tell you, after yesterday...I'm not sure that would happen. I don't think I could A) get them to sit down to listen and B) that they would agree with my wishes.

My wife agreed later l have the right, and would let me go if I wished it. But I was so freaked out by my family's reaction that I was willing to donate a kidney to have them stop crying.

But your answer is closest to how I feel, Brandon. Thank you.

I agree with Brandon also. I lost my father in 2007 he was only 62 and I was only 23. He died of Mesothelioma he had 18 months from when he was diagnosed. So I am speaking from a child's point of view. This wreaked so much havoc on his body he couldn't do anything by himself anymore by the time he died and I personally think that hanging on to make everyone else feel better when you're completely deteriorated as a human being is not the right choice. By the time my dad died he had wished he died months before it was just too much of an inhumane way to be living. As much as I wanted every day I could get with him and wish everyday for more I can't accept having HIM suffer for MY selfish wants. I'm sure your children are far too young to understand or feel this way but I think in the years to come reflecting back on it they might. I think when your life is to the point of being harder to hang on then it is to keep trying for one more day you should sign those papers regardless of their feelings because after all this is your death and in a situation with so little control you should at least have that control. I wish the best to you and your family. EDIT: he didn't get to walk me down the aisle but he gave me everything he could and the best years of my life were spent with him and that is enough.

Thank you. That's what I'm hoping for, that they recognize that I tried my hardest for as long as I could. That I loved them enough that I stayed longer than I ever could have wanted to, just for them.

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This is the saddest thing I've read in a while. Good luck man, I hope you get to live a long life with your wife and kids

Well, shit, I didn't want it to be sad, I wanted it to be a thoughtful rumination on life and death. Jesus, that does sound sad. Fuck.

What happened when you were told about this disease?

Did you run out and do any last minute things, have any sudden burst of insight or regrets?

No, when I was diagnosed, I was told to do as little as I possibly could. Any activity increased the likelihood of sudden cardiac death. I was as weak as a kitten, much like Homer after his heart attack early in the series ("Hey, quit poking me!") and last minute things weren't really possible. I did eventually start thinking about things I've always wanted to do, and that's why I took the test for MENSA. I was admitted as a member, and I'm quite proud of that. I went to the ocean for perhaps the last time. I wanted to do that.

Thanks for sharing this, I hope you see the ocean again. :)

I took a picture the last time I walked down. Do you want to see it?

If it's not too much of a problem, I'd love to see it the way you did :)

http://i.imgur.com/29fd8.jpg

I went down to the fence line and watched the kids play and the water come in. I was too weak to walk down to the water.

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My mother died after fighting cancer for five years. She hid it from us at first. This allowed the caner to spread throughout her body. Watching the medical miracle after medical miracle that kept her alive but tore her body to shreds was probably more mentally devastating to my young self than if she would have gone peacefully. I wish you and your family the best and hope all the days you have left together are joyous.

"Tore her body to shreds" is pretty much where I am. I have bruises all over both arms, my stomach...all from needle punctures and injections. Everything from morphine to heparin...just trying to keep me comfortable and alive.

I often asked her if it was worth it. Although her back was now malformed and humped (she lost 4 inches in height), she had a port in her chest, her stomach distended with fluids, malnourished from not being able to keep food down, and looking like she was 80 when she wasn't even 50 yet she would always tell me yes. But only to see me. I at times feel guilty for her pain. I hope you stay comfortable and anything you aren't comfortable with doing you should not have to go through with.

Don't feel guilty. Just keep being you. She is making that decision for herself. It's her decision and you don't need to carry that heavy bag of guilt. She doesn't want it and you don't need it. Understand?

It is hard, I know I could not have done what she did to stay with us. Thank you so much.

You'd be surprised. If you're her child, you have at least half that strength, right?

Sorry if this is too deep.

What are your thoughts on not being able to teach your kids everything they need to grow up?

For example, I'm 20 and my sister is 22. My Dad said that in ~5 years his job as a parent will be done. He will have taught us everything we need to learn from him. Everything after that is nice, but we (kids) will be fully functional by that point.

Are you worried you won't be able to raise your kids fully?

Yes, and no. My wife is a wonderful mother and my parents are great, too. I don't think I would ever be able to finish teaching my kids. I would be teaching them every moment I could.

Our church is great, too. So I think they would be guided very well if I weren't around.

Smile while you can, it might help your family cheer up a little and it'll give them something sweet to remember. Damnit, now I'm crying. :(
great big platonic manly bro-hug

bro-hug back with much grunting and back slapping

so far you simply referred to the virus as "virus". What EXACTLY is the scientific/technical name of the virus ?

They don't know. They did a cardiac catheterization and biopsied part of my heart. It wasn't any of the usual suspects like CoxSackie B or any of the others that generally cause distended cardiomyopathy. So my official diagnosis is "non-ischemic distended cardiomyopathy." I'd like to know, too, so I could see where I picked it up, you know, study clustering...use some of my CDC training, but no one knows.

This IAmA makes me sad. It's very sad. Regardless of what happens, I hope things end well for you. I think people are going to be sad for a while either way.

It kinda is, but it's not how I live my life or conduct myself. I'm the 'life' of the party and have an excellent sense of humor, both about myself and others. But you're right, it's going to be sad. No way to avoid it.

What's your prognosis?

That I may die today, or I may live to nearly a normal lifespan. Barring anything else going wrong: being hit by a bus, bitten by a spider, whatever...this will be what kills me. Nobody knows when, though. People ask why I don't get a new heart, and the truth seems to be that while I am sick enough to die, I am not sick enough to need a heart right away, which is the reasoning that doctors use to decide such things. It is possible, since I've had two heart attacks and two strokes, that I may need a transplant in the future, but not right now.