Ablation Update

I wanted to update everyone after Patrick's procedure yesterday.

The ablation didn't go as planned. Do you remember when he had the treadmill stress test and his heart refused to malfunction? I swear, his heart is like a little toddler and does the opposite of what we want it to.

During the ablation the doctors couldn't get Patrick's heart to go into v-tach. While normally this wouldn’t be a bad thing, it prevented the doctors from being able to pinpoint exactly where they needed to perform the ablation.

I’m not certain on the specifics but I know they did the best they could. I believe they went over the scars from the previous ablation and possibly added new spots that they could see might be causing trouble.

Now for the bad stuff.

Because they couldn’t get his heart to malfunction under anesthesia, they woke Patrick up. He was strapped to the table and unable to move while they apologized to him and said they needed to keep him awake. Their hope was that the stress of feeling the pain and knowing what was happening to him would induce v-tach, but it didn’t. All it did was cause Patrick to feel an unimaginable amount of pain.

He was in pain for quite a while, including the two entry points they used on either side of his groin. But he refused pain medicine after a few hours and has since eaten and has been discharged from the hospital.

Patrick is back at the hotel now and will be coming home tomorrow just after 4pm. He hasn’t had any palpitations or v-tachs, so only time will tell how successful the doctors were.

Thank you for all the prayers and well wishes!

Musings

Please forgive my double posting. But I wrote this just after it happened, and the scene was so real, so raw and honest, that I wanted to share it with you.

I may write more of these. I feel the need to lay it bare before you - this journey and all aspects of it; to be brutally honest in the fight we have never experienced, because most of you are likely also as in the dark as we were/are. 

It helps me cope, and I hope in some way it helps all of you. One day these posts may be your story, or someone you love. You guys know how vivacious and good-humored Patrick can be. He was that way on his good days, and until recently he was like that on his bad days. 

Although Patrick is an enigma - a bit rough around the edges but with a heart of gold - it's a fact that anyone around you could have similar struggles (or entirely different but just as painful and traumatizing) to what he has endured. 

You never know, so please be kind. 

***

The time on my phone says 12:34am. Just after midnight. I'm leaning against the bathroom door jam while Patrick gets ready for bed. Although I'm done, something tells me to stay. He didn't ask and I didn't explain. 

We both know how sick he is. How fragile life is in general. We both know what is happening inside his chest that shouldn't be happening, and what's not happening that should. 

But I watch him, taking in the tiny, multiplying details that discourage him. 

His shoulders are thin, devoid of softness. Still the only shoulders I want to rest my head on after a long day.

The skin on his neck is loose, covered by the beard I have been asking him to grow for 17 years. 

I watch as he performs mundane tasks - takes his dentures out, peels the old glue off. 

He says, "Thanks for watching over me," but he doesn't stop what he's doing. He needs to finish; needs to get in bed. 

But as he leans over to drop the old glue into the waste basket he haphazardly aims for the opening, missing the mark, and quickly stands back up.

"Leaning over makes it worse," he says with a grimace. His hands clutch at his stomach. "Pins and needles," he says, giving me a worried glance. "It's like my stomach is wrapped in pins and needles."

He resumes getting ready for bed as I watch, noting the thinness of his arms and legs, the skin on his lower belly that just months ago held a soft layer of fat. He looks small. Frail. 

"What are you?" I ask, because I never quite understand the magnitude of his symptoms. How could I? They are intensely felt internally, yet only vaguely detected externally. "On a scale…"

My prompt makes him wince.

"Eight," he says, but his thin face reveals it may be higher. He clutches at his stomach again, as though he wishes he could squeeze it like a wet washcloth, watching the pain and torment drip off his hands. I wish it too, and look on, helpless. 

Ablation #2, Coming Right Up!

* I wrote this last night and am posting it this morning. The heart event I talk about happened two days ago. *

Patrick has been remarkably stable for the last couple of weeks. We detected an increased pattern in his heart episodes that coincided with the times that he takes his pills in the morning and at night. Our solution was to gradually change the times that he takes them from 8:00 AM and PM to 5:30 AM and PM.

This enabled him to take his morning pills after having been in bed for 6 or 7 hours, and it left him with another 1.5-2 hours to give the pills time to kick in. And in the evening, taking the pills at 5:30pm means he still has a half hour to let the pills begin to work while we sit at the shop, and he is more freely able to walk to the park with the kids and I, and to engage in light activities such as shopping with our family.

But in order for you to understand his mental state because of and during these time changes, I need to go further into the Why of the time changes.

Patrick tends to take his pills at 5:20 in both the morning and the evening. We have identified what we call a Danger Zone in the timing. There is a period of about 2 hours prior to taking his medication where he is more prone to v-tachs and defibrillator shocks, as well as 1.5-2 hours after taking his medication where light activity can cause the same episodes.

So while he watches the clock, fully aware of what time it is and feeling inside his body that his prior medications are wearing off and things are beginning to not feel right, he takes his pills every day 10 minutes early. It’s almost as though he's attempting to cheat the system out of fear.

In my opinion, there is a certain level of control in detecting these patterns in the timing of his health. I can't say there is a level of comfort because we constantly live like we are on the edge of a precipice, and at any moment the slightest breeze could push us over. It is a scary place to live. But knowing what times he is more susceptible to attacks means we can brace ourselves against the winds that before would have caught us by surprise every damn time.

With that being said, it is not a fail-proof system. Yesterday morning Patrick took his pills at 5:20am, and then at 5:50am he woke me up to say he was going into v-tach. I put my hand on him from across the bed as he laid there, waiting for the episode to pass.

But as he sat up and said, “It’s coming,” I had about 5 or 6 seconds to scramble out of bed, get to him, and wrap my arms around him before the defibrillator blasted him. Again, that cry of pain is … there are no words. It's horrifying. Indescribable.

There was no warning. There were no signs that something was coming. This one happened spontaneously in his sleep with no triggers.

Patrick had an episode while sitting at the shop last week. Thankfully I was there and I was able to hold him like I do. I don’t recall what triggered it, though I do know it was in the Danger Zone just prior to him taking his evening medications.

This time the heart episode happened in front of his sister and his mom, which added an element of “Please not here.” “Please not now.” The family history of heart disease has caused his family more trauma than many families will endure over several generations.

What also made it a unique situation was the female tourist who sat outside the windows of the shop, staring in like Patrick was a creature in a fishbowl. He saw her, she saw him, and while we understand she had no idea what was happening, it was just rude and unsettling that she watched.

That day he did not get shocked by his defibrillator, but it prompted a somewhat ridiculous conversation between him and I a couple days ago. I said I almost wish his v-tachs always ended in defibrillator shocks.

I know. Crazy, right?

But he knew exactly what I was talking about. The waiting and the not knowing during his episodes is almost unbearable. Will the defibrillator go off? If it will, when? WHEN?! GET IT OVER WITH, FOR GOD’S SAKE!

He can feel it charging and then subsiding, charging and subsiding, over and over again sometimes. It is what elicited so much fear in us that day last winter when he barely made it to the hospital and endured a 27-minute v-tach episode they had to physically shock him out of with an external defibrillator.

But the desire for a definitive, episode-ending defibrillator shock is only part of the emotional pie we wolfe down when he has an episode.

Imagine the worst stomach ache you’ve ever had, and translate that to emotional turmoil within your mind. Mental nausea. Is that a thing?

The other pieces of the pie are as follows:

“Oh my God, there’s the defibrillator shock. There it is. It’s over. Right? Isn’t it over?”

“That cry of pain. I can’t handle hearing his cry of pain. I can’t handle this.”

“Is his face in my belt buckle? I can’t reposition him. He’s in the recovery mode.”

“Oh God, was that the only defibrillator shock? Is there going to be another one?”

“Tell him you’re there; that it’s okay. That you’ve got him.”

“Don’t squeeze him too tight. Don’t squeeze his torso. Pressure. No squeezing.”

“Is he going to get shocked again? Is this it? Is this the end? The kids are watching…”

I suppose his pie is different, but probably similar in many ways.

One thing that I don’t believe I’ve written about here before is what happens after the shock. My arms are around him and his are around me, so I can feel what’s going on inside his body. This last shock really made something clear to me - the phenomena where he says it feels like the blood in his body rushes back and forth towards his torso and his arms go weak and fall, then rise again with strength, then fall, and rise again.

It is an unsettling effect of the defibrillator shock. He has told me about it before but in my hysterical mental state I believe I assumed it was more of a convulsion, or panic manifesting in his inability to sit still. I plan on asking him to inquire about it at his next appointment.

Which, by the way, is in just a few days! The skies cleared, the stars aligned, and Patricks appointment and travel arrangements were nearly effortless. He flies to Seattle on the 12th, has his Covid test on the 13th, and his second ablation procedure on the 14th. I do not know when his return flight will be yet because we haven’t scheduled it. No one knows how he will recover from the procedure or when he will be ready to go home.

We have high hopes for this procedure. How could we not? It’s impossible to go from nearly rock bottom - inconceivable, in fact - and believe you’ll go deeper; that the world will open up and swallow you whole.

Patrick’s weight continues to drop. The last time he checked a few days ago he was 163 pounds. He doesn’t look the same. His clothes are loose. He is still wearing size Large shirts when a Medium would probably be too big.

He is sick all the time. There isn’t a single minute of the day when his stomach isn’t torturing him. Eating makes it worse, but eating is also a necessity. He continues to stave off the weight loss as best he can, but it is inevitable. He said last night for the first time that he realizes the ablation likely won’t help with his stomach. If his stomach issues stem from decreased heart function - its inability to pump enough blood to power his digestive system - the ablation won’t help with that.

It’s disheartening to watch the person you love most in the world, lose hope. It’s worse than disheartening. I am at a loss for words.

Please keep us in your prayers. Send positive thoughts. Remind Patrick when you see him that he is valued, that he is loved, and that he is needed. Anything to keep his spirits up, but also because all those things are true.

Thank you, everyone.