“If it looks like a duck…”
Patrick finally received one of the phone calls we have been waiting for - that one of his pseudo-heart episodes was indeed a true v-tach.
We haven’t particularly been looking forward to that call, but we did expect it at some point. The receiving of it has so many implications that it’s mind boggling.
First and foremost is the return of Patrick’s anxiety. The doctors talk of PTSD amongst heart disease sufferers who also possess an implanted defibrillator. It’s like standing behind a horse waiting to be kicked, with someone off to the side reminding you, “This will save your life.” Truly? But it will also be incredibly painful and traumatic? Sounds… fun.
And on top of the actual defibrillator shock is the period of time immediately preceding the shock - the build-up; the charging; the heart event itself. Trauma with a side of trauma, sprinkled with trauma.
Another thing this call brought to mind was Patrick’s mortality. Yes, we face that every day. But the return of v-tachs and the impending defibrillator shocks spells the return of the awful mantra that circulates in my mind (and likely Patrick’s as well), “The defibrillator will work until it doesn’t.
The v-tach happened Sunday night at 10:30pm. How quickly we have returned to worrying that he could die at any moment.
Other implications of the call include an immediate increase in the time the kids and I will be spending with Patrick. It helps with our peace of mind, perhaps mine more so than his. He has always been a “It Is What It Is” kind of person. He could receive his defibrillator shock while I am sitting beside him at our shop, or it could happen while I am in town and he is at home. It could happen At. Any. Time.
Before he left for the shop he said, "Keep your phone on you today." He says SO MUCH with those words.
"If there's an emergency I need to be able to reach you."
"If I'm going to die, yours is the only voice I want to hear."
"I'm scared."
I'll end this post with a request:
We have a list of people who have volunteered to help Patrick after he gets the heart transplant. And if I'm honest, the care he'll need may become necessary prior to the transplant, if his health declines enough. We would really like to see that list expanded - we want backups for our backup's backups.
We also don't know what his living situation will be in the two to four months he is expected to stay in the Seattle area post transplant.
As much as he and I dislike asking for help for even the smallest of things, we both feel the need to ask for enormous things should they become necessary.
• • • Are you or someone you know (very well) available to help with caring for Patrick and/or providing transportation in the Seattle area if he becomes unexpectedly weakened and unable to fully care for himself?
• • • Are you or someone you know able to provide him with a temporary place to stay while he initiates aftercare with the UW heart center, for two to four months after the transplant?
• • • Are you or someone you know confidant that you can handle a grumpy, ruggedly handsome (his words) invalid (my word) during his convalescence? Keep in mind I am fond of introducing him as the most annoying person I have ever met…
The upheaval for our family that would occur in the event I was the one who went to Seattle to provide care for Patrick, to us seems to be the worst case scenario. Without going into a long discourse, it would negatively affect the future of our family physically, emotionally, and financially. While not ideal, Patrick going to Seattle alone is what makes the most unfortunate sense to us in regards to the emotional wellbeing of our children, and the financial wellbeing of our family.
We understand what we ask isn't a minor detail. When I said in an earlier post, "It takes a village," I wasn't being facetious. It has been proven to us over and over that Patrick and I can't get through this ordeal with its multitude of unknowns, by ourselves. We need you - your prayers, your hugs, your phone calls; and someday, possibly soon, much more than that.
As an aside, here is Patrick's schedule of appointments (and approximate appointments for those that have been committed but not yet scheduled) for the next two months:
• October 26 - Flight to Seattle
• October 27 - 4 hour gastric emptying scan at UWMC Nuclear Medicine
• October 28 - Biliary scan at UWMC Nuclear Medicine
• October 29 - Flight back to Fairbanks
• Early November - Colonoscopy at FMH to finish ruling out cancer as the cause of his gastric issues
• December 5 - Flight to Seattle and a follow up with the heart failure specialist
Thanks to everyone for all of the love and support you guys bombard us with!