fett on 4/2/2016 at 22:19

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So I guess some/most of you know I'm currently in residence at Penn State Hershey Medical Center. Despite have an artificial heart places last August, I had a really scary episode a few weeks ago that seems to have been related either the heart or the pump. Either way, my medical teams feels safer with me here. My family does to, but we're at a juncture where it's my choice to stay or go home.

If I stay, I remain in "IA Status" which means I'm top priority when a matching donor heart is offered. It means I might be here for months - like even as long as a year, waiting. My family lives about 30 minutes away, so this means with my wife's schedule and the help of friends, I get to see my two boys about every 3 days for the evening, and my wife for shorter periods a little more often because she actually works here. We homeschool so the boys and I are especially used to being around each other 24/7 and we love it. Not to mention I've been the primary care giver for both of them since they were born, due to being handicapped and unable to earn income. While I have the biggest room on the unit, and great repoire with the nurses (from so many past admissions), my guitars, XBox, and the means to actually make my own meals in my room, I can't leave the hospital if I'm to remain listed at the IA status.

If I go home, it's probably I will be able to survive on my artificial heart/pump for 2-3 years (maybe longer, everyone who's had one gets transplanted before then so who knows how long someone could survive? Theoretically forever, because the heart keeps the rest of your body at optimal health in a sense). But there's no guarantee of that, or that whatever happened a few weeks ago doesn't foretell future problems with the machines. A transplant is inevitable, but at home I am only considered a "IB Status" like an LVAD patient, and it's highly unlikely I would get transplanted anytime in the next two years. I have a semi-normal life at home, but it's dependent on being plugged into a wall socket or having enough battery life to go on. Plus, I can do very little physical activity - no working out, no playing live music, no soccer with the kids, no swimming pools, no bike riding or even being able to teach them to ride. I can't drive myself anywhere. So there are some pretty huge limitations with living on the artificial, but at least I'm living.

Faced with these two choices, my thoughts are: Do I go home and have as much time with my family as possible, keeping in mind that the inevitable transplant isn't a guarantee of a better life? When the inevitable transplant takes place, I risk death, complications from the artificial being in for so long, and the consequent blood transfusions causing rejection/death. I've gained that time with them, but increased my risk of complications during the transplant.

Also Mountain Dew or Mellow Yellow. Fuck me.

SlyFoxx on 4/2/2016 at 23:14

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Say you get a new heart tomorrow and the install goes well...how long does the average person expect to survive?

fett on 5/2/2016 at 05:59

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Homeschooling is covered. We plan out assignments for the semester during the holidays/summer and set them up with a calendar to keep them on track. They're old enough now to pretty much time manage and stay up with it, and I'm on Skype all day if they have problems. We actually did their chemistry tonight here in my room. Christie works nights and sleeps days (3 shifts a week) and they're old enough to be home by themselves too, and other folks in our co-op can always give them rides to book club, field trips, etc. so we've got all that fixed.

Can't really move closer for financial reasons, plus that would be a lot for Christie to undertake right now with all that's going on (plus she's being forced to start her bachelor program next week by the union that essentially controls the nursing program at Penn State). No reason for it really - they're only 20 minutes away on a good day, and moving closer to the hospital is going to increase our mortgage payment significantly. It also moves them away from the support system that is helping with rides and such right now. Think about it this way - what if I stay here and get a heart in three months, after relocating? Really the trouble is not worth the risk or expense.

Slyfoxx - people are living 20-30 years, tops, but the average is more like 10-14.

demagogue on 5/2/2016 at 10:07

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Maybe this is one of those cases where you make an old fashioned pros/cons list & then go with what your robot heart says in the end anyway.

SlyFoxx on 5/2/2016 at 12:57

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Thinking from the gut it seems to me I'd want to take the shortest path to cutting the cord. Stay put.

And ...Mountain Dew....duh!