faetal on 10/12/2021 at 14:22

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Great news!

fett on 10/1/2022 at 03:08

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Update:

As our recent medical crisis winds its way into "normality," it becomes more difficult to keep these short. As usual, the situation is complicated, mainly because my physiology is complicated (read: convoluted) to the point of absurdity. I know you'd all love a short version but sometimes there simply isn't one. If reading this is exhausting, imagine our struggle as we try to decide how to proceed.

I'll be leaving rehab in the near future, either this week or within the month. We don't know exactly when because in our current healthcare system, such decisions are made not by doctors and therapists who are actively assessing the situation moment by moment but by insurance companies whose agents are unable to even pronounce the medications I take, much less know what they're for. At least we've kept the communism out of our healthcare, I guess, so lose/lose for us. Regardless, I'm very likely to leave here in a wheelchair, which is no surprise to us. The spinal cord stroke I had during ECMO hasn't had nearly enough time to heal or reveal whether or not the damage is permanent or not, and it's too soon for an MRI to tell anything. So the goal has been to get me as independent in a wheelchair as possible, with a view of getting on my feet over the next year.

Accomplishing this is highly time sensitive. It means I need to be able to continue with the same exercises I've been doing here, without missing more than a day or two. Stanford requires me to stay within 30 minutes of them for another few weeks, which means if I'm discharged soon, I'll be going to the wheelchair ready hotel suite so graciously provided to us through Denise Redeker’s Heartfelt Help Foundation. This is however problematic given the Omnicron variant's prevalence here in CA and the odds of exposure in a hotel environment. Outpatient physical therapy is equally problematic for the same reason. If I can stay in rehab for a few more weeks, the 30 min requirement will be over and I can discharge directly home where my exposure risk is greatly diminished, and I can continue therapy with my own equipment without losing weeks of progress in a hotel. We won't know until Mon or Tues. I'll leave out the rush/ stress of trying to make sure we've purchased everything we need for life outside of rehab in a wheelchair. Lots of balls in the air.

The heaviest of these is the question of this nasty, elusive antibody that caused this situation to begin with. It's still hanging around, meaning my own body is producing it, no matter what heart I have. This calls up so many questions about so-called Intelligent Design that the mind boggles, but I digress. Though the antibody appears to be harmless to the brand new heart according to biopsies and all the tests Stanford has (and they have them all - they created most of them…), the same thing is true of the heart I recieved at Penn State in 2016. Our discussion with Dr. Kush, one of the leading heart transplant experts on the planet, leads us to believe Stanford will not continue to test for the antibody since it appears harmless (just like before). It would appear that the best indicator that it is causing harm will be my day to day self-assessment. In other words, if I start feeling sick or "off" they will search for and treat it with plasmapheresis, as they did at first. But there's no way to know how much damage has been done by the time I feel "off." The fact that the antibody is present in my system makes me a bad candidate for future re-transplants.

So that's where we are. Not the worst of outcomes, but not much assurance or resolution on either count. As with many of life's questions, this has no immediate, definitive answer, and we have to learn to live in that in- between state, where you soak in the moment and try not to be a melancholy sap to the people around you. Maybe some resolution will come with a second opinion, or if I can get home and on my feet. But if it doesn't, and I can't, we have to be content with the situation as is. And that's the real challenge, isn't it? To just be content no matter the circumstance. That's how to Carpe the Diem, as it were. That's the life-long struggle. But it's also where music, and good writing, and dancing, and all other expression comes from. Longing for something different while adapting to what is.

That's now the road before us. And we will walk it as we always do, together, with a Little Help From My Friends, and soak in everything we can along the way. Tolkein says (through the character of Gandalf), "All we can do is decide what to do with the time given to us." That agency of decision may be limited, but it always exists, if I look for it. I've been able to find it in all of life's challenges and I'm already finding it in this one. It helps that I've been blessed with three other people who look for it too.

Again, thanks to everyone who's made it possible for us to give this our full attention. Your generosity is exactly why we have some of the options we do, and we appreciate that more than I can express. I'll update more often as things will be changing quickly and there's more to say. In the meantime, take care of each other, stay safe, and may the groove be with you (meaning, go listen to something that makes your booty move, and be happy to be alive today!).

Love, peace
Dave

Tocky on 13/1/2022 at 07:18

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It sucks is what. But it's what you get for now. Crazy about the hotel thing, it's like they are admitting you need to still be in the hospital but our health care system sucks so... out you go. On the one hand I hate you have to go through this and on the other I'm glad you still get to. Thanks for the update. And thanks for still having a sense of humor and understanding about it all. It's good to hear from you no matter and you still have the best attitude about it after all of the crap thrown your way. So many I care for have just winked out. I'm glad you at least get the chance to fight. I feel like I should say hoo rah or something at this point but somehow it's not appropriate. Come by and see us sometimes if you get the chance.