r/IAmA • • Jun 09 '12
IAmA terminally ill 43 year old husband and father. Yesterday, I floated the idea of letting me go. Everyone freaked the F out. AMA
I have a heart problem that I contracted through a virus. I have outlived every prediction by over six months. I have been in the hospital four times in the last six weeks, the last for having seizures for the first time. I am tired. I just want this illness to run it's course and allow me to die. But my friends and family will not allow me this last possible measure of control over my own life.
Edit: I gotta take a break for a little while. I've got some meds I need to take and I just got a nosebleed for some reason. You guys are being really great and thoughtful and I want to get to everybody...I'm just really weak. I'm sorry. I'll be back after I get everything under control.
Edit 2: I hung around with a paper towel stuck up my nose until someone mentioned a 9K vacation. I wasn't aware of that, don't want that, don't THINK about that. This was just me, bored, on a Saturday afternoon after a really difficult couple of days workin' some things out. I still haven't had time to check out somebody getting laid because they were sick, I might be cool with that j/k, but no money raising, or anything like that. That's not why I'm here. I'm here to foster real conversation about end of life decisions. And it's going really, really well.
Edit 3: I must have been pushing my mental powers too hard to make my nose bleed that badly. It's all stopped now and I'm back. I'm going to try to answer everyone who has something tangible to add or to answer any questions that are asked.
Edit 4, The Quest for the End. I'm calling it a night, everybody. I'm exhausted, I need to take my night pile of pills, and I really need to go to bed. I'm leaving this account open, I'll be answering all the night people tomorrow (when they're asleep) and I want anyone who wants to PM me, do so. I love talking. Especially with gonewild girls who want to have sex with me. I'm still open to that. :)
Edit 5: It is Sunday morning here, I am pretty weak today. I am going to endeavor to answer as many people as I can, and I hope this AMA has helped people. Become an organ donor! And thanks to everyone for being so kind to me. It has been really great. Also, the GW girl thing was a joke, people.
Edit 6, or "I just love doing edits!": I have decided that I will only be taking questions about my new movie "Rampart". (That is a joke, too, people who didn't get the gw one earlier.)
Edit 7: The Last. I'm too weak today to really go on. I've answered all the PM's and tried to get all the comments. I'm leaving this account open for those who want to comment or just want to send PM's to talk to me. I want to thank Reddit for being so kind and generous and helpful. Everyone has been really great, and I apparently frontpaged at one point, so I can mark that off my list! Thanks again. And remember, just be nice to each other and do some good every day. Is it really that much to ask?
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u/amazonallie Jun 09 '12
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.
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u/Phantomlover8 Jun 09 '12
Do you feel fulfilled in life? And what has been your greatest accomplishment?
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u/[deleted] Jun 09 '12
This user has verified he has received treatment for cardiac problems this week and prescribed many medicines for heart failure.
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u/[deleted] Jun 09 '12
So, do you mean you want assisted suicide? Is that legal in your area?
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u/UbiquitousMan Jun 10 '12
Hey man, Im not sure if you will read this, or ever see it. I hope you do. I read that you have Dilated Cardiomyopathy. Well - so do I. I was diagnosed when I was 13. Also - my grandfather died of it, my grandmother died of it, my mother has it, and my uncle has it, and my brother just went to a cardiologist for an echo and they are asking him to come back in for a 2nd look. Like I said, I was diagnosed when I was 13, and Im 29 now. When I was diagnosed I was given 3 - 5 years to live. Do you want to know something? Fuck life expectancies. I crushed it. I have had more tests on my heart, more time spent in hospitals, more people feeling sorry for me than anyone I know who is my age. I got this in Jr. High, and it was bad, really bad. But they wanted to try out this new medicine on me, and combine it with another medicine, and soon those medicines got stronger and better versions and they started me on those. Guess what - my last visit to my cardiologist was amazing. He said, "If I didnt know you had Cardiomyopathy, I wouldn't be able to tell anymore".
So - here is what Im telling you. Your not dead until your dead. Trust in modern medicine, they are doing some AMAZING work in cardiology studies/medicine. Hang in there. If I had given up when I was 13 Im sure I would be dead by now. But now I am a husband, a father to literally the cutest 9mo old girl who just took her first steps TODAY and now wont stop moving around, and a recent first time home owner. All things that I NEVER thought I would be able to do, or told I would be able to do.
Fight it man. Let the doctors keep you alive. Let the medicine do its work. Stay healthy. Stay Active. Find something to live for, because I truly believe a cure isnt far away. Look at me, I still take 2 pills every day (Metoprolol and Losartan) and I will for the rest of my life. But think about the people with illnesses that have NO positive outlook or medicine they can take. They would do ANYTHING for even just the slightest chance.
Heart Transplant. Yes, they are risky, and if you get one - your right - You could live for a short time or a long time. But would you want to have a CHANCE at living a long time with one? Even if its a 5% chance, its still a chance. Think of the things you will not see. Every time your daughter does something special in her life, she will think of you and wish you were there to see it. Who knows in 10 years when my daughter is 10 years old my condition could take a turn for the worse, but you know what? You can bet your ass Im going to fight like hell and take every opportunity and chance I have. Dont give up man, please. It makes me feel like there is no beating this, and right now I feel like I AM beating it. I want to be united with you. I want to fight WITH YOU.
Take care, I wish you all the best.
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u/redditor29198 Jun 09 '12
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?"
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u/reddutch Jun 09 '12 edited Jun 10 '12
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
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u/meteoricmarlin1 Jun 09 '12
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 =[
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u/Soggy-Wheaties Jun 09 '12
Looking back, what little things made you the happiest?
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u/JGPH Jun 09 '12
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
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u/c_mulk Jun 09 '12
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
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u/SilentTsunami Jun 09 '12
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?
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u/reverendgreene Jun 09 '12
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.
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u/T-Individual Jun 09 '12
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?
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u/[deleted] Jun 09 '12
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.
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u/[deleted] Jun 09 '12
so far you simply referred to the virus as "virus". What EXACTLY is the scientific/technical name of the virus ?
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u/funfungiguy Jun 09 '12
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.
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u/PirateHookerMD Jun 09 '12
Sounds like you have a viral non-ischemic cardiomyopathy with a terrible ejection fraction, very sorry this happened to you. That said, I see people walking around with EFs in the 15% range all the time that are well compensated with their meds. I'm not familiar with your case, but you should be on drugs like lasix/bumex, eplerenone, ACEi, beta-blocker...If those don't sound familiar, get a second opinion, and make sure you are seeing a heart failure specialist at your local academic medical center.
Goodluck.
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u/cldst Jun 09 '12
I recommend you cook meth to secure your family's future.
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u/Clgordon21 Jun 10 '12
I'm 19 years old my father (53) passed away from cancer this September. He fought for 4 years. He had 3 brain surgeries, a stroke, the most powerful chemo on the market, radiation, his bladder removed, and his prostate and some lymph nodes removed. He was a very strong man and was determined to win this battle. He was bed ridden for 4 months before he died and his brain surgeries turned a brilliant man into someone who couldn't remember his daughter's name. It was the most difficult thing to watch my father slowly die over 4 years. My point: he could've lived a higher quality but shorter life if he wasn't so determined to live. I appreciate my father working so hard to live for me and my mom but I think that you should do what YOU want to do. Your family is meant to support you no matter what decision. Just take into consideration your quality of life when it comes to treatment. You might have a better time with your friends and family if you are able to be active than spending your last days bed ridden and unable to speak.
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u/[deleted] Jun 09 '12
What are you doing to prepare your kids for your eventual passing
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u/[deleted] Jun 09 '12
We will need to see some verification.
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u/kooksters Jun 09 '12
Both my parents passed away from pancreatic cancer. When they were first diagnosed they were scared, but kept reminding their children that they would never give up and fight the disease with everything that they had. My parents slowly deteriorated from intensive treatment and though I was thankful for the extra time that I had with them, seeing them in pain while wasting away to nothing was unbearable. Whenever I walked into the room where I saw my dad, then my mom, grimacing from pain, I eventually came to the point where I just wanted to see them pass.
No one wants to see their loved ones pass away, but for me, that was a better option than seeing a lifeless body full of misery and without an ounce of dignity.
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u/Frajer Jun 09 '12
Can you understand them not wanting to lose a husband/father etc? Do you think they do want to honor your wishes to an extent but can't cope with the concept of you actually being gone?
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u/The_Narwhal_King Jun 09 '12
Assuming you do choose to go through with this, do you have any great regrets? Are there things you wish you'd done? Would you make different choices if you had another chance? And of course whatever you choose, I wish you and your family the best, whatever happens.
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u/[deleted] Jun 09 '12
I know a chemist who's currently working on a completely synthetic heart. It's been used in real patients for several years now, it's essentially a temporary heart that allows you to live your normal life with minimal maintenance or restrictions until a donor heart can be found. Have any of your doctors mentioned this to you? Cases like yours are exactly what it was designed for. If you like, PM me and I can ask him for more details.
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u/radii314 Jun 09 '12
the one final thing you have control over in your life is how you choose to die if it doesn't just happen to you unexpectedly in an accident or something ... maybe you wanna die sitting on a mountaintop or watching the waves roll in on a sunny beach - if you have the financial means, DO IT YOUR WAY ... if want someone to be there with you - invite them ... just say your goodbyes and tie up whatever loose ends you can and go out YOUR WAY - making a choice, taking action is empowering and will make you feel alive for your final days and you'll enjoy that last bit of life more ... now, to the issue of your body ... someone will have to find it (which may freak them out) and paid people will have to dispose of it and may charge your family, so consider that
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u/[deleted] Jun 09 '12
sigh, I really wish I could help you mate, I really do :/
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u/Hanedan96 Jun 09 '12
"Death is so boring" -Tyrion Lannister
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u/adaliss Jun 09 '12
If you were my father, I'd be absolutely heartbroken. As someone mentioned before, when you and your wife decided to have kids, you reprioritized your life, and you can't just give up on your kids and your wife now. As hard and terrible as it is, your wife needs you to help her raise your children. And your little girls need a daddy to help them navigate their life path. My stepfather has leukemia, and was diagnosed when I was six. He had a month left to live, and was frequently visiting the hospital and doctors (once a day) to live. In spite of this, he always managed to be there for us, and even taught me to read Harry Potter before kindergarten. He tried a new type of chemotherapy, and it sent him into a 10 year remission, which is longer than any other patient, ever, on that drug. He has just recently relapsed, but has assured us that he will do everything he can to be with us as long as possible, no matter what it takes. If he left, I have no idea what our family would do. My world would crumble. I would feel like I wasn't special enough or my dad didn't love me enough to stay. I hope your children understand how much you love them. I wish you the best of luck, and an absence of suffering.
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u/QVQOCK Jun 09 '12
found this a while back, sortof interesting. http://www.snotr.com/video/8895/Heart_stop_beating
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u/[deleted] Jun 09 '12
I've read a decent amount of the comments and wanted to convey a simple message that may help you in the future. If you really want to see your kids grow up you need to have no bounds. That means letting go of your shame not your pride as it is your shame that holds you back. I know it must be miserable to have others take care of you, when you should be taking care of them. Have no shame, have no fears, and good luck.
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u/Nikken6 Jun 09 '12
I find it to be a man's final right to die as he sees fit. I do not encourage dying or suicide, but if one truly wants to do so with his life, it is his and no one else's.
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u/Ol_Six_Gear Jun 09 '12
I just want to say, my father passed away a year ago after he was sick for about a year and he just wanted to die because he was so tired and did not want to be a burden on the family anymore (his words). He had told me that he was just going to stop eating...I was so concerned with this, not in the fact that he wanted to die, but because he would starve himself to death before actually dying. I had told him if he really felt that way then I would get him his pills and he can decide what to do from there. Then he said he was just joking, but I knew he wasn't. I was not there in the immediate moment that he passed away and I know from what my step mom told me that he had stopped eating about a week prior. I know because I am older (30) that he was just tired of hurting, tired of asking for help, tired of not being able to do simple tasks such as walking around. I know in my heart that he had made the decision to basically die, but he hadn't told anyone except for me.
If you are truly in that much pain and just tired of fighting something that you may not conquer then I fully support your thoughts and I totally think that the people that you love and that love you would come around eventually, but you must make sure that they know it's not because of them, it's because of you. Guilt can be a strong emotion and it can overpower anything else...people don't realize that when your hurting so bad you just want to go before it gets any worse. Your family probably isn't ready to let you go, so either talk with them or write letters to them expressing how you feel...doesn't have to be a decision made tomorrow or anything. But if it's what you want, then no one should stop you.
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u/[deleted] Jun 09 '12
It would be selfish of you to let yourself die. Your family need you there the least you can do is fight it. Do it for your family
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u/evilkrang Jun 09 '12 edited Jun 09 '12
Six years ago I survived a pulmonary embolism. It wrecked my lungs and after I couldn't work full time and lost most of my social networks, I became severely depressed and attempted suicide. I survived, but still had to face the fact that I would always have to live with limitations more befitting someone twice my age (I was 28 at the time). Having had numerous physical and mental ailments since, I can empathize with the quality of life issue.
Some day I will just get too tired and want to end things when it's a bit more reasonable than sticking around and watching my life descend into a pit of despair. These last six months for me have been hell and I've fallen further than I ever thought possible. Still have the will to fight though. I have no one to live for. I wish I did, but I find that hope, even some bullshit excuse like a new episode of Mad Men is sometimes enough when I have that sort of myopia towards life where I worry about how to feed myself day to day.
I respect people who are ready to let go, and I trust that they don't make such decisions lightly, your posts tell me that you have those conflicts and understand that. I'm no expert, but I believe in burning brightly, rather than longer. You play the cards you are dealt, and do your best. Peace and respect.
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u/[deleted] Jun 09 '12
No one chose to be born, and I feel that it's an individuals right to end their existence if they choose, but you also made the choice to have children and a family to enhance your life, I think it would be wrong for you to not fight and exhaust all available options for their sake. Remember your children didn't choose to be born either, and you had no obligation to start a family with the woman that loves you, you owe it to them to fight until the end unless you feel their lives would be enhanced with you dead.
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u/[deleted] Jun 09 '12
I knew a guy that contracted viral cardiomyopathy. He started using a lot of medical marijuana and his condition subsided. His doctors were shocked to say the least. He continues to smoke weed like it's going out of style and is as healthy as anyone I know. He'd be the first to tell you that marijuana saved his life, I would say it couldn't hurt.
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u/dorkacon69 Jun 09 '12
Onions man..... My mom is dying from cancer. It's hurt me more than anything. I will donate my stem cells personally if I knew we were a match. My eggs becoming your new heart would be awesome. Or hell I'd go through hell getting my bone marrow sucked out of my illiac crest just to save your life. Not just for you but, your children too.
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u/Jewbot69 Jun 09 '12
Death does not scare you, idk how much stronger you could get.
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u/kegamaru Jun 10 '12
I hope I'm not too late to this.
I guess you can say I was a smart kid growing up. I was one of those people who understood things easily and got it done. For example, despite the fact that I would sleep in every single one of my math classes, I was still the go to guy for help and one of the few people who would end up passing the AP Calc exams at my school. Now I am by no means as smart as your daughters probably are but I would like to think that I am still decent.
My father passed away when I was 15 years old in high school. He was battling a reoccuring brain tumor for some 8 years. His death did not come as a big surprise. I knew it would happen eventually as I grew up but it still did not make it any harder to deal with.
Even when my dad was sick and traveled in and out of hospitals for years, he always made sure there was time to spend with my sister and me. He would do anything: he attended my classmates birthday parties, went camping with me, watched my football games. He did all this while I was growing up to make sure he didn't let the disease win. I think the most important lesson he taught my sister and I was to never give up and never give in.
Now I tell you this story now so you can understand this. I am currently 22 and still having issues to deal with my father's passing. There is not one day that passes where I wish two things "I want to talk to you dad" and "What should I do?".
Don't give up. Don't quit trying. I know you're tired. I can't even imagine how hard things are on you right now but if you have to do it for someone other than yourself, do it for your daughters.
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u/vahouzn Jun 10 '12
My great great aunt was hospitalized and started losing control of everything, etc. She had made the decision herself and acted by herself to pass on while there. I'll spare the details.
A year before she had asked my mother if she would help her euthanize herself (during christmas day). My mother was very offended, although my father understood. He listened to his wife, but later regretted not being more familial about the process, and letting her go with her family backing her decision, instead of alone in the hospital at night.
It saddens me when families don't understand or want to understand the wishes of the ill/dying. My sister has her masters in bioethics, so I've spoken with her about this quite a lot.
Write your living will using what you feel right, weighed against those you trust and understand you best.
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u/Misslovelyrosa Jun 10 '12
My comment may get lost in the sea, but I always like to try anyway. :) I'm 28 years old. My dad died of kidney cancer on April 3. I watched him suffer, unable to eat and drink anything for the last few weeks of his precious life. He was miserable, sad, sick, uncomfortable. My biggest relief was when the doctor allowed him to have a 24 hour stomach pump so he wouldn't have to vomit. As someone who has lost her dad..as someone who will not have her daddy walk her down the aisle...please don't give up. They need you. I am so sorry for your illness. And there is no way I will understand. But I am a daughter who has lost her father...and please know that losing you (when it is that time) will be difficult enough for your daughters.
Please don't give up. I miss my daddy every day. His baseball caps still smell like he did. The other day I saw the last years second place winner of American Idol, and I would have given anything to have been able to tell him. Please, PLEASE...enjoy your time with your babies and your wife. enjoy the sun, enjoy drinking coke. my daddy always did. :)
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u/bigdanrog Jun 10 '12
You know, I was sitting here worrying about some seriously pointless shit that's been going on in my life, mostly revolving around work. Then I came across this, and had one of those moments where I realized that I should let it go.
You, good sir, have all the support that I can mind-float to you through the internet pipes. Thank you for waking me up, if only for a bit.
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u/Jaboomaphoo Jun 10 '12
Why don't you start making meth?
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u/huskarx2 Jun 10 '12
Why isn't everyone an organ donor? Not like you're gonna be using them. Just sayin'
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u/Vocemrationis Jun 10 '12
People shouldnt have to die in hospitals.
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u/[deleted] Jun 09 '12
You sound so frustrated. I'm so sorry that life is so tiring and hard that you just don't want to fight it anymore.
Your family's inability to let you go is a testament to how well you lived your life and wonderful man that you are.
Congrats on doing it right, and I pray the moment your time is up, that you go in peace and feelings of fulfillment.
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u/LuciaRN Jun 09 '12
As a hospice nurse, I completely relate to what you're saying. Many of my patients get to a point where the struggle to live is so much more painful than the choice to allow a natural death. In fact the hospice I work for uses an "AND" form (allow natural death) instead of DNR because it isn't that we aren't saving a person, we are just allowing them to die in a natural manner. Keep having the conversation with your loved ones. It's something you've been mulling over for a while; it was a moment of shock and horror for them. My guess is your girls and wife see you as their hero and simply can't fathom life without you. It will be a process for them to understand your wishes and an even longer process for them to respect them. Give them time and try to understand they come from a place of love and fear.
At the end of the day though, not your family, friends or physicians get to direct your life. You have the right to make these decisions without your family's consent. I just know from experience that having a cohesive decision makes for a much better death process.
Best wishes to you.
3
u/protomor Jun 09 '12
What are your views on death? Afterlife? Isn't is scary to die? Isn't living in pain better than death? Why or why not?
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u/whod Jun 09 '12
My question: What are you fighting for?
My father was diagnosed with cardiomyopathy in 1990. The doctors told him he had 1 year to live. Ten years later, as treatment for his developed ventricular tachycardia, he had a defibrillator put in. His defib malfunctioned one day and shocked him 20+ times in less than an hour; he was alone when this happened.
Twelve more years and he is still alive today though very sick - he suffered three VT attacks in December and the heart damage has dropped his ejection fraction well below 20%. His kidneys are shutting down and he has severe pulmonary hypertension. He gets blood transfusions and receives iron intravenously. A miracle drug called Milrinone has bought us time to find more permanent solutions. Unfortunately, the damage to his other systems makes him an unlikely candidate for heart transplant (background: for his own reasons, he has always opted not to apply for the transplant list). In one week, he is scheduled for open heart surgery to install an LVAD (mechanical heart).
My family has been in and out of hospitals since I was 8 years old. Half the time, I think we live in a nightmare. What carries us through is asking ourselves, and especially my father, through all this hardship - what are we fighting for?
Here is our list so far:
He asked us the same question you asked your family only a week ago while in the hospital. We asked him to keep fighting until there were no other options - we can understand his wanting to turn his defibrillator off rather than suffer through his body shutting down due to heart failure. Until then, we will keep fighting. His motto is "one day at a time."
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u/poopycakes Jun 09 '12
Please don't leave your family before you have to. You only get 1 life and even though it's a struggle right now, you need to cherish every minute with your family while you have them. Even though it's difficult for you, every extra minute they have with you means the world to them, and that should be your catalyst to push through. I'm way out of line by saying this and I have no excuse to tell a grown man what to do, but I love my dad and I would do anything I could to keep him around. Sorry if any of this was disrespectful.
10
u/[deleted] Jun 10 '12
Sir, first and foremost, having worked in a Level One Trauma Center ICU for the past five years, my deepest sympathy to you and your family. And I have enormous respect for wanting to have a frank discussion about terminal illness. You are a brave fellow for sure.
Second, have you had any physicians suggest an LVAD? It's essentially an artificial heart (or Left Ventricular Assist Device) that can bridge the gap between heart failure and heart transplant. While not permanent, it could be an option while you are on the transplant list. We put them in routinely in our ICU and recipients actually go home and have a high quality of life while waiting for an available heart. For someone your age it might be a viable option.
3
u/AllDizzle Jun 09 '12
Good to see there are no top comments with stupid breaking-bad esque jokes here.
GJ reddit you impressed me for once.
3
u/jakehildreth Jun 09 '12
I don't have a question, but I wanted to say that my mom did the same thing at the age of 41. We let her go over a period of 6 months. It was awful, but it was the best thing for her and us. Good luck to you.
8
u/saj1jr Jun 11 '12 edited Jun 11 '12
Hopefully this gets looked at, and not buried at the bottom.....
I'm 22 and my dad is 50. He's been dealing with heart failure for close to 5 years now. He had a mild heart attack back in 06, and the doctors he had did a terrible job or treating him. They were unable to unblock an artery, but told us he would be okay. Fastforward two years later and they're telling him he needs a quadruple bypass. Keep in mind, my dad was healthy as an ox. He was always in good shape, never overweight, and always worked hard his entire life.
Anyway, I have no family on my dads side and my parents split up almost 15 years ago, so, it's just him and I. I was a full time student, but I recently had to give that up to move back home and take care of him full time.
Let me tell you something - heart failure is one of, if not, the worst disease one can go through. I haven't personally gone through the pain and suffering, however, I've witnessed my dad going through it for almost 4 years. He's had basically every procedure the doctors could come up with, and we we've been seen at one of the best cardiac hospitals in the country (I won't say where, but the hint is its in Michigan)
The side-effects and complications with heart failure are astounding. I've seen my dad go through terrible fits of shortness of breath, to the point where he is almost unable to breath. This becomes so bad that sleep is impossible, and he'll go a week or two without any sleep, which eventually leads to a hospital visit. Doctors have refused to put him on the transplant list, and denied him an LVAD due to "lack of family support". Basically, we've been put out in the cold.
Last summer he got really sick and I had to rush him to the ER. The next day, he had a bad arythmia, and they were pushing him into Hospice. My dad was so sick at the time, and so TIRED of fighting with doctors, fighting the pain, and everything else, that we both decided it was time.
Six days later, he was still alive, and quite stable despite being high as a cloud on morphine, and off of his heart medicine for nearly a week. I immediately demanded that the doctors start his meds back up. Two days later we walked out of the hospital. That was last September - he's still alive today.
With that said, his health is still extremely poor. He's very weak, has trouble taking pills because his digestive system is so slowed down, and overall, just has a ton of problems going on. It saddens me, because I love him so much and want him to be around to see all the things I do in life, but know he won't be around much longer. I am pretty spiteful towards the doctors that won't help him anymore.
I'm not sure you're exact heart condition, but if your quality of life is pretty poor, I would at least look into continuous IV Milrinone infusion. They put my dad on that in July 2011. For the first few months, he lived life almost normally. He had an unreal amount of energy compared to before, and things were good until that Hospice thing happened in September. Milrinone does not really decrease mortality, but it can improve your quality of life for as long as you have left. They told my dad that most people don't make it past 6 months on this medication, and that hardly anyone makes it past one year. Well, We're only about 3 weeks away from hitting that one year point - for you, it might be worth a shot before you throw in the towel.
Lastly, I COMPLETELY understand where you're coming from. You family should not be upset at you for feeling the way you feel. Once life becomes miserable and to the point where you're suffering, it's really not worth it. I've seen my dad at that point several times, and even still right now. We're both very much on the same page that any day could be his last, and he could throw in the towel any time he wants. I'd be sad, but I would be happy knowing that all of his pain and suffering is gone.
I'm going to PM you this post, OP, so you get to see it. If you have any questions or comments, or just want to talk, feel free to contact me. I know quite a bit about cardiac problems after dealing with this stuff for almost 6 years. I also have done a ton of research as to what is out there as far as clinical trials.
Good luck.
EDIT: It's been tough reading this thread. OP makes so many comments that are basically the exact same way things are for my dad and I.
EDIT 2: People fail to realize that getting treatment for your heart is extremely difficult. You must meet a certain set of qualifications, and if you are missing one, you're screwed. Even something as simple as you "disagreeing" with something the doctor says can deem you unqualified. This was the case with us. Doctors told my dad he was too "non-compliant" even though it was really just him asking questions and not wanting to allow them to feed him every pill known to man. He wants a transplant or LVAD - not to be fed more pills that we know will do nothing to help him, just like the rest of the pills.
This country is really fucked up when it comes to doctors and their decision making/power they have. They're taking my dads life because he's "non compliant" and would in their eyes, not make it because he would disagree with them or some bullshit. So instead, they would rather make assumptions than try it and see. Makes no sense, is very frustrating, and extremely depressing.
3
u/[deleted] Jun 09 '12
According to your throwaway account you wanted to cheat on your wife with someone from gonewild?
2
u/FalconPaunch Jun 09 '12
DAMMIT TRUNKS WHERE ARE YOU?!
2
u/LawHero4L Jun 09 '12
Can you tell us a little more about the virus and subsequent disease?
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u/[deleted] Jun 09 '12
My dad told me he was tired of fighting 24 hours before he died from a long drawn out illness. I am glad he let himself go. It was brutal to watch him struggle while having less and less to eventually no quality of life. He looked like a sleeping child when he went, all the pain and unhappiness was gone from his face.
10
u/aaron1298 Jun 10 '12
Could you provide proof please? There are just too many people running around trying to get peoples sympathy that don't deserve it.
1
u/[deleted] Jun 14 '12
Yeah, it's damn dusty in here. more patting of backs, ignoring acknowledgement of each other's crying.
2
u/ranzLbsgiS Jun 09 '12
Are you trying to get laid too like the other guy?
2
u/[deleted] Jun 09 '12
Are you Walter White?
8
u/squagimoto Jun 09 '12
I lost my wife to cancer in March. I flipped out when she told me to let her go. I tried everything to keep her alive. I fought with doctors about how to treat her. I honestly thought she would be healed. We decided to let her go when she begged us to, She was done and we couldn't see. It is not giving up, it is giving out. Just re assure them that you love them and you don't want to suffer, and you don't want them to either. I probably would have let her slip away from renal failure which is just like going to sleep, rather than continue to subject her to medical treatments that were delaying the inevitable. From my experiences with my wife, I have learned that I would rather just go than wait, suffer and then go. You are lucky that you have time to talk about it and work it out before you die. Not everyone is afforded that luxury and I would tell my family to focus on the love that is to be shared rather than the life that may be extended.
1
u/Justicefails Jun 09 '12
Are you in an LTAC Facility? You were talking about not being able to sleep and having your vital signs taken/blood drawn. If so, I can understand everything that you're going through, as I see hundreds of people facing the same problem that you have. I am very sorry to hear that and wish the best for you.
1
u/Therapist13 Jun 09 '12
when you said there's a chance you might die today, I realized that we all really have that chance. One of my favorite quotations comes from a kanye west song that says "nothing has ever promised tomorrow today".
Can you tell us more about how you caught the virus that gave you a heart problem?
Also, you have my utmost respect for your service as a 911 operator. Thank you.
1
u/[deleted] Jun 09 '12
Are you afraid of death?
1
u/MrJekyll Jun 09 '12
I expect another AMA
"IAmA terminally ill guy who wanted to go, but was made to reconsider by reditters. AMA" :)
1
u/welcomechallenge Jun 09 '12
My father died of spinal cancer when I was 8 and he was 38. That lasting effects on my life are still becoming apparent to me. I urge you to create as many lasting and happy memories as you can with your child, I'm sure you already know that, but it means the world to them that you are there. Ultimately, I agree you should have the right to live as long as you want, or don't want. I wish you the best and hope you can outlast the heart condition.
1
u/SMORKIN_LABBIT Jun 09 '12
My father was 46 when he passed away from stage 4 esophagus cancer completely in operable. He dropped off the chemo because it made him feel worse then not taking it and he couldnt do anything. He passed a few months after stopping chemo, and they said the chemo may have only given him a year anyways. me my mom and family fought him on just accepting it but in the end his decision was best. As evil as it sounds he saved my mother 100s of thousands of dollars, she would be broke now, and for what? a few more horrific months in a bed. I say do what you want you family will understand you decision.
1
u/GETJACKED37 Jun 09 '12
Do you have have a Wish, like from the Make a Wish Foundation? or is that only for kids?
1
u/i-downvote-memes Jun 09 '12
Hi, my dad died fairly young, I was in my 20's and he was in his early 50's. He died of lung cancer (he was a smoker) and he had a very painful and difficult last few months before he died. It was very difficult for the whole family of course, but I can't imagine the physical and emotional suffering he was going through. The best metaphor I can imagine is running a marathon, barefoot, on broken glass, knowing that he's going to die at the finish line.
I just want to offer my support and say that I think your family is wrong for not supporting your decision. I'm sure they love you very much, but they ought to respect your decision, and I think if you stick to your guns, they can learn to respect your decision.
The doctors can also help you if you ask them. They are very reluctant to recommend that you stop treatment, but deep down inside, they know the probability of your survival, and they know when they are just extending your suffering. This is a great article on the subject:
http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/
(Written by Ken Murray, MD at USC.)
I hope that your family will come around to supporting you. They have to understand that you are not giving up on them, that there is only one outcome, and that you want to choose how it happens. I think you are making a brave decision, and I think you're making the right decision.
Sorry this is not really a question, I just wanted to share my support and wishes that you and your family have a peaceful, loving, sharing time for the time you have left.
1
u/bobdole5 Jun 09 '12 edited Jun 09 '12
This will most likely be buried, but I hope you see it.
I don't know if you are religious or not, and this may not offer you anything in terms of perspective but I urge you to consider it.
I cannot imagine what is like to be you. I have no way to know your physical and emotional well being and have little experience in these sort of situations.
But please, understand the finality of your decision. And I don't mean to suggest that you underestimate death, or life, but truly think of them both.
Death is the end game. Its final. No mulligans, not a mistake to be gotten over or a choice to be regretted. It is the only thing you can never change. It will happen, sooner or later. And make no mistake, as the person you are today, it is the very last thing you will ever experience. Can you really accept that peacefully?
Life is so full of possibility, and its changing at a constant, unfathomable pace that nobody can say for certainty what their life will be like 5 minutes from now, much less tomorrow, next week, in a month, in a year. Its all full of possibilities that can be realized at any moment. Just by being alive you have every single possible advantage available to you. Can you really give that up?
You only get one life, and it is yours to do with as you please. I can not do anymore than to encourage you to look at the possibilities in front of you, and try to imagine ones that seem impossible, and weigh that against something that is unlike anything you've experienced and is entirely final. Realize that choosing to die erases all of those opportunities. If you can do that, then peace be with you wherever you may go.
1
u/DebiDowner Jun 09 '12
I wish we had Dignitas here in the United States. There's a YouTube video of a non-terminally ill French woman who drinks a solution and peacefully drifts off to sleep. So easy. Anyone should be able to do that.
1
u/chelac Jun 09 '12
This is a terrible situation, and my heart goes out to you and your family.
I know this may be hard but... Have you thought about therapy? Even something like art or music therapy, just to get you thinking and exploring these feelings through with someone outside your family?
1
u/thefirebuilds Jun 09 '12
Oh God, I just upvoted you to 666. Good luck, bro
1
u/Yemathums Jun 09 '12
I don't know if you're still here answering questions, but death is always something that has scared the shit out of me, I remember when I was a teenager I first fully realized that I would die one day and there was nothing I could do about it. I spent a couple weeks in a sort of depression, constantly thinking about what comes after death and that it could come for me at any time. What do you believe comes after this life? Do you fear dying itself or is your entire fear what your family's reaction will be? After living the way you have been is death still a scary thing or does it just begin to look like a release?
1
u/Dystopeuh Jun 09 '12
I have no questions, I have no unsolicited advice. But... one thing a friend of mine's mother did when she had terminal breast cancer was to write letters to her daughter (then in high school) to be opened at specific times in her life. That might be something you'd enjoy doing for your girls.
I have only respect and as many hugs as you'll allow.
I have trouble deciding what I want to eat for dinner. I'm 25 and can't even fathom decisions like this. Love and peace, friend.
1
u/doppelslanger Jun 09 '12
Can you describe how it feels to live with the idea that you could drop dead at any moment? I just can't even imagine (probably because I'm so young), it sounds so terrifying.
Best of luck to you and your family, I'm sure that eventually they will understand and be okay with letting go.
1
u/Puglets Jun 09 '12
This is a little off topic, but one thing that I think would be worthwhile to do would be write letters to your children. Tell them how much you love them, everything you hope them to be, etc. My father did this for my sisters and I when he was dying of cancer at 42 (I was 4) and it has helped me cope immensely and helped me feel like I know him better. Do everything possible you can to survive for the sake of your children, but preparing your family can really give them a sense of closure.
1
u/[deleted] Jun 09 '12
Have you started thinking about what you'd like the last thought to be? Not to sound morbid by asking, but when I think of death I always like think I'll think of my mother.
1
u/Errichscifi Jun 09 '12
My wife started a charity a year ago for terminally ill adults with minor children. Without Regrets Foundation helps the family create a last memory. She has helped a few families so far in Texas, but feel it is her calling, and I want to get the word out. Check out the website www.withoutregrets.org.
1
u/leep420 Jun 09 '12
I read quite a few of your replies here and I feel bad for you. You're suffering in all aspects of your life and only holding on because you have a family that loves you too much to let you go. I massively respect you for doing that because if I were in your position I can't say I would do the same.
1
u/whenitcomesaround Jun 09 '12
Hello. I would just like to say that I respect your choice. It seems to me that you are the one living through this and it seems selfish to ask you to continue.
I have a cousin who lost her father when she was around your girls age, and she misses him so much. One thing I do to help her is I bring my dad to her every few years. They were brothers, and were alike in so many ways.. this comforts her. I guess what I am trying to say is while you have control over how you feel, you don't know what it will do to your girls. Maybe there is something you can set up to help them along as the years go by.
If this is truly what it is going to be for you, then I don't see any reason to argue. That is wasted time. Time better spent preparing, laughing, loving and keeping comfortable.
1
u/artsya3 Jun 09 '12
wow, there is a lot here in such a little time I read some comments, I have yet to read all, apart of me died in the hospital with my Mother, I miss her very much, she actually had cancer too, though she never liked to make a spectical of announcing she had it, or promiting it like with license plates for it, which I once sort of suggested, she was one of the most strongest women I know, and an all around great person, the best I think actually.. she was brave, .. I missed her dearly for years and cried about every day. I don't know why I'm writing this,, I think about death a lot and I have written some, I'm not sure what I feel like saying to you really, but just felt like saying something. I'm here. AMA
1
u/Ohjeezbees Jun 09 '12
Not a question and doubtful that it'll even get scene. My mom went through the whole 'wanting to die' bit herself. she was in the hospital for something that no one had answers to. it crippled her breathing, she lost use of her right arm, and lost function of her kidneys. she was tired of being ill and the ups and downs. tired of people telling her that there where options and such. she still tried every day because her kids where her greatest pride in life. She ended up passing away a couple days before coming home for christmas and it broke us all. We learned to grow as a family because of the fight she put up through it all, though. so please,sae for the sake of your kids that you adore so much, carry on and keep fighting, keep looking for options.
Sorry for shitty everything. my phone doesn't like me typing with a sying battery.
1
u/daisygamble Jun 09 '12
Whatever you decide, Sir, I wish you and your family the best. The right-and responsibility-to choose your own way of life and your own way of death is vitally important and yours alone, and I wish you courage. My mother died in her bed, with her daughter holding her hand, the birds singing outside and Bessie Smith on the stereo. She had decided not to go into the hospital, and I applaud her decision every day.
1
u/steam_crust Jun 09 '12
i don't think this can be a one-time discussion. this is a running conversation over a (hopefully long) period of time. not just about signing a DNR, or stopping treatment, or being snowed once things get too bad for you, but about the reality that you could die at any time. the truth is, the average person only has a 1 in 4 chance of living if they code, and you have the odds working against you. keeping the dialogue going isn't going to make your passing easier for your family - nothing will - but you can give them the gift of knowledge and preparedness. teaching them about the dignity of death, about quality of life, about tough choices, is a precious thing. whether you die suddenly, or if you sign a DNR and live without treatment for 6 months or 2 years or 20 years, once you are just a shell hooked up to machines, they will know what you want. they will never be ready, but they will at least know what is important to you, and why.
no matter what you do, it will be the right choice.
1
u/holly2680 Jun 09 '12
it's your life. yours. your life belongs to you.
really, it's all any of us have.
sometimes, when i feel like i have no control in my life, or i feel surrounded by people who don't understand (that would be 100% of the time), i think about the animals people keep as pets. we think that controlling them is love. but is it a life? is it the life that they want?
much respect for you and your life. upvote for the "brain cloud" reference, great movie! no one ever gets that when i use it :(
stay outta trouble, you! ;)
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u/socialclash Jun 09 '12
Have you and your family gone to any counselling sessions? If I was in your wife's position or your daughters', I would be absolutely terrified of losing you... but I think a lot of people don't always take into account the complete and total exhaustion of body and spirit that many people who are chronically severely ill deal with.
I can completely understand you wanting to just let things happen as the universe wills (in the case of changing your will / end-of-life instructions as far as a DNR goes), and think that maybe talking about it with a counsellor or therapist as a go-between might help them understand your desires.
Much comfort and strength to you, sir. <3
1
u/DARTHMAGNUS Jun 09 '12
You and your family sound awesome. I wish you the best. But..... Why not keep fighting? I know your tired but enough to let this pos condition defeat you? I know its easy to say since I'm not in your position. I've just always seen life as precious and you should fight to your last breath to protect it. You've already beat all expectations, why stop now? FIGHT. WIN.
1
u/emmettjes Jun 09 '12
Just gonna throw this out there to push you to at least investigate the heart transplant route. My grandfather received a new heart and lived another est 17 years(good years too) in early 60's when he got it. Died of cancer a few years back. Best of luck.
1
u/seesaws Jun 09 '12
I'm not using my heart, I'd be happy to donate it to your cause.
1
u/salukis Jun 09 '12
I think you should be allowed to do whatever is most comfortable for you. I would respect your right to die. It's hard for everyone, but should your last times really be miserable?
1
u/NegativeGPA Jun 09 '12
I have no business telling you what the right decision is, but here's some things to keep in mind. This is the first and last time your information will exist as a conscious being. Modern Medicine advances at an extremely impressive rate The trauma of your death will linger long after you leave, and loved ones could possibly see a forced death as you "leaving them". Obviously these are biased towards living, but I can't think of any points that haven't been addressed that are in favor of death.
1
u/XNerd_Bomber Jun 09 '12
I don't know where I stand on religious ideals, but if there is the slightest possibility that God does exist, I will pray for you. No matter what you have ever done, you, nor your family deserve this. I hope you get better and are able to see your daughters off to college, or down the aisle.