So I should probably start with an update from my last post–I celebrated my one-year stomaversary on October 17th. I did not get a cake, but we were on “vacation” in my midwestern hometown so we could enjoy fall weather (since it’s still hot in the south) and so I could handle some business with my parents’ estate/my inheritance. We enjoyed ourselves–I caught up with my old friends, and BG played with their kids and had a ball. We took our labrador and he enjoyed going to “puppy camp” (doggy daycare) a couple times and every morning we’d bring him scrambled eggs from breakfast (we stayed at a Staybridge Suites hotel as it allows pets and it provided breakfast, which was delicious). I enjoyed going to my old favorite restaurants to get yummy gluten-free specialties. And really, we’d love to move back there at some point because it’s a lovely town.
But there was some bad stuff too.
At the 9th hour of our 13 hour drive, I received word that my dear girlfriend had passed away of complications with her cancer. I knew she was terminal, but she had been just fine the day before and no one expected this. I was heartbroken that I didn’t get to see her one last time. I did join her husband and some friends to celebrate her life, but they were all drunk and disorderly (which is why I love them) and I had Mr. MLACS and BG with me so we didn’t stay long, as they were heading towards a collective breakdown. I didn’t make it to her official memorial and I know some of the crew found that offensive. But funerals are for the living. Jen knew I loved her. And I reached out to her husband to support him. I cried for her–she was a beautiful person.
Then, my sister was (as per usual) a giant passive-aggressive, manipulative pain-in-the-ass. She never misses an opportunity to make my life difficult and piss me off, then play the victim when I call her on her sh*t. She likes feeling like she has some power over me. It’s pathetic. And I’m sure our estate lawyer needed a drink after dealing with our quarrels last week–he will be so glad to be rid of us. I don’t envy him. We have one item left in the trust and then it will be dissolved and we won’t have to “work together” anymore as co-trustees.
And then, we took a 2hr trip to a nearby city to do fun stuff with BG in the afternoon and have dinner with a dear friend in the evening. But while we were riding the train at the zoo…
Mr. MLACS was shocked by his defibrillator.
He was sitting in the seat in front of me so I didn’t see his face, but I heard a loud crack and saw him fly back in his seat–I knew instantly that he’d been shocked…but I thought it was static electricity or a loose wire on the train…it didn’t even occur to me it was his ICD (pacemaker/defibrillator device implanted on his heart). He was in shock but he didn’t lose consciousness. I figured out what had happened and a wave of panic started in the pit of my stomach but BG was right next to me so I couldn’t react. I stayed eerily calm (which is how I am in these situations–I become automated). No one else knew anything was wrong and since Mr. MLACS was conscious I didn’t feel the need to call for help–I mean what could anyone do? I didn’t know what to do–the cardiologist never gave me any instructions.
So I sat there in shock, rubbing his back until we got off the train. Mr. MLACS was not feeling well but he could walk. We had promised BG to get her something at the gift shop and it was about to close so we ran in there and suddenly I knew I had to call his cardiologist and figure out what to do next. So I did that, and they said take him to an emergency room to be looked at. And I had to make a choice–go directly to an ER in the city *or* drive the 2hrs back to my hometown where the hospital has his previous records from his initial heart failure and drop him at the ER and take BG back to the hotel (because ER’s are no place for children or pregnant women). So I chose option 2 and just tried to stay calm. Mr. MLACS was floored. And blaming himself–asking “What did I do wrong?” It was heartbreaking.
So luckily BG fell asleep on the ride and I didnt have to explain why we were dropping Mr. MLACS at the hospital. While he got checked out, I started googling…and now I am PISSED at his cardiologist. Because *this guy* acted like the goal was for Mr. MLACS not yo have any more episodes. But from what I read, even the youngest and healthiest individuals with an ICD are shocked *1-2 times per year on average*. Mr. MLACS has been shocked twice this year, and both times we thought it was a crisis situation and that it wasn’t supposed to happen and I blamed myself–maybe he is too stressed and he needs less expectations and responsibilities, while Mr. MLACS agonizes over what he did wrong.
But the truth is, that his heart randomly malfunctions. The ER found nothing in his bloodwork. Nothing in his EKG. Nothing in his x-ray. His heartrate was perfectly normal (he was sitting peacefully on the train) and for no apparent reason he went into V-fib (a dangerous arrythmia). His heartrate went from 60bpm to 324bpm in an instant, his ICD device shocked him once on the lowest setting, and his heartrate returned to 60bpm as if nothing had even happened.
There was nothing we could do to prevent it. There is nothing we can do to stop it from happening again at this point. Mr. MLACS is dilligently losing weight so he can qualify for a surgery that will try to pinpoint the part of his heart that malfunctions to cause the arrythmia and have it ablazed (burnt so it quits wreaking havoc). But there are no guarantees.
I take solace in statistics–he is statistically likely to survive 10 more years. He could live decades–he’s young and most of the people with ICD’s are 60+ years old, so they skew the statistics. But I hate that we have to live in fear of the next “episode”. I hate how much pain/frustration/anxiety/guilt it causes Mr. MLACS. I hate that I need to teach BG how to dial 911 as soon as possible. I hate that I worry when he is alone with her or when he puts her on his shoulders–that she could be traumatized by witnessing an event or hurt because he fell while carrying her. I hate that I worry about Mr. MLACS driving and that I really don’t want him driving our girls–could I ever forgive myself if I allowed it and something happened to my babies while he was driving?
This is a heavy burden. All this fear.
But we have to keep living. We can’t let fear dictate our lives. Yes, we have to be dilligent and cautious, but we don’t have to be consumed by fear.
So I exhale and keep going.