SD on 5/2/2016 at 16:02
My thoughts are stay where you are and get your transplant sooner rather than later. By the time that one wears out they will be growing them from your DNA in a lab. Hopefully :)
Tocky on 6/2/2016 at 02:42
Stay. You already know how I feel about artificial hearts. Plus you are going to have to go with what your family thinks is best anyway. You have to. You don't get to make that choice so just settle into their decision. If you die from going home they will blame themselves so just suck it up and wait. Read. Stare out the window a lot. Play chess with the orderlies. Play jello shot Risk with the nurses. Waiting is the hardest thing to do but it's often the hardest things that are the best things in the end. *Boom tish*. That's my take but I don't have to climb your walls.
It's not the amount of time you spend as much as the quality of it anyway right?
Medlar on 6/2/2016 at 19:44
What do your kids think you should do fett?
fett on 7/2/2016 at 03:00
They're really pragmatic. They want me to be home but they know it's better for me to stay. We're really ready to get this over with. It's going on six years since I found out I needed a heart. Getting really old.
To complicate things, we'd gotten really close to this 19 year old kid named Perry here on this same ward - I'm actually in his old room right now. Same situation, HCM, artificial heart, lived here for 8 months, got transplanted. But the transplant was a mess, he almost died, has been on dialysis for kidneys and liver. Went home for a few weeks, came back with chest pain, turned out lung cancer had been lurking in his system and the immuno-suppressants allowed it to multiple really aggressively. Within three weeks it had spread to his lymph system and bone marrow. He died a week ago tomorrow night. So that's been really sad and scary for everyone since I'm kind of on the same path as him. Objectively, no two people are alike, and his situation was pretty bizarre and rare, but because we were close to it, it kind of drove home the dangers of what I'm dealing with. The kids are struggling with that, but we're all leaning heavily toward me waiting it out.
Thanks, Tocky. I know you're right. I've got a book to re-write for a agent and a website launch next month, so I've plenty to keep me busy here. I just hate the separation. It's a risk either way but logically it seems like it makes way more sense to just endure staying here for now. I got a little taste of freedom for a few months with the artificial heart, so it's tough to give that up and be imprisoned here again, but I can do anything for six months, maybe even a year if I have to.
SlyFoxx on 7/2/2016 at 03:05
Quote Posted by fett
.... but I can do anything for six months, maybe even a year if I have to.
My mother used to tell me the same thing when I was a kid/late teen and couldn't see past next week.
Medlar on 7/2/2016 at 17:34
Sounds like the decision has been made, just got to be accepted eh!
Good luck fett, may good fortune find you soon.
BEAR on 7/2/2016 at 20:48
Quote Posted by SD
My thoughts are stay where you are and get your transplant sooner rather than later. By the time that one wears out they will be growing them from your DNA in a lab. Hopefully :)
This was my first thought too, the next 20 years could be a total gamechanger for this kind of issue but its hard to count on breakthroughs. Slightly off topic but it kills me though when I find out a person is not an organ donor, I pretty much figured everyone was but in the last few years I've met several people who just couldn't deal with the thought that parts of them could be in someone else after they die. Of course it is their body, but I have a hard time relating.
@Fett, I think it is great that you are homeschooling given the circumstances and it sounds like you guys are doing a great job at it (my parents pretty much winged it but it still worked out pretty well overall). No matter what happens spending that extra time with your kids priceless.
Mr.Duck on 10/2/2016 at 10:20
Whatever you decide with the fam, don't have any regrets. <3
And I go with dema's response too.
Kolya on 10/2/2016 at 13:24
Quote Posted by BEAR
Slightly off topic but it kills me though when I find out a person is not an organ donor, I pretty much figured everyone was but in the last few years I've met several people who just couldn't deal with the thought that parts of them could be in someone else after they die. Of course it is their body, but I have a hard time relating.
I can somewhat relate to the feeling. First it forces you to deal with your own mortality and then it also makes you feel replaceable. Someone else could walk around with parts of your body. Might be an asshole. Or worse: someone who makes more of this life than you managed to do. That being said, I'm a donor myself, or possibly will be.
derfy on 11/2/2016 at 11:08
I just figured I won't be around to care about it and signed up to be a donor.
