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.

We're Still Here!

It’s been a while, and now feels like a good time to write a blog post. During Patrick’s trip to Seattle we learned that he was in fact a candidate for a second ablation, which was due to be scheduled for a month out from when he came home. What no one told us was that he would have to call to schedule it. And before anyone comes for me about taking charge of matters, Patrick and I couldn’t be any more frustrated with this and ourselves. So, we’ve got the self-flagellation covered. We left a message in Seattle on May 26th, over a week ago. Since we assumed the procedure was scheduled we didn’t have a sense of urgency to get into contact with anyone. When we finally did manage that yesterday, we were told it would now be scheduled since we had contacted them. (*Bangs head against door jam*) And, oh, by the way, the next availability isn’t until July 17th. *Insert scream of frustration here*... So that’s another “It is what it is” situation. We can’t undo the wasted time. Nor can we speed up the scheduling process. So our schedule is as follows - ventricular tachycardia ablation on July 17th, and the follow up with the heart failure specialist on July 25th. In the meantime one of the things Patrick has been struggling with is his weight. It continues to drop slowly despite his best efforts to see it plateau. He is officially at 40 pounds lost. The size 33 pants he purchased recently are becoming loose. I could go on about how he takes errant bites of junk food to save his weight loss, and therefore makes himself sick, which in turn makes him grumpy, but I’ll leave that bit up to your imagination. I do believe this is part of the process of him coping with having such an awful disease. A good friend of mine recently told me about her mantra when dealing with difficult people, “Grace, grace, grace.” So if Patrick staves off depression by inhaling one of the kids’ pizza crusts and it makes him sick and grumpy, “Grace, grace, grace.” I understand. I see his pain and his fear. I help him cope. I’m not a saint. Lord, have I proven over and over again that I am certainly not a saint! But we are in this for the long haul, and my place is at his side. These last three weeks have been busy, but in terms of Patrick’s heart failure symptoms, fairly uneventful. The food struggle has been constant since he survives every day on boiled vegetables and granola bars. And the v-tachs and palpitations are also common, but not serious. That sounds utterly ridiculous to say, but it’s true. Patrick’s tolerance level for his symptoms has risen by necessity. Fairbanks Memorial Hospital has nothing left to offer him. A week ago he developed mild cold symptoms. While I am not a doctor and can’t say for sure, I believe this has led to an uptick in symptoms. On Thursday morning they culminated in a defibrillator shock. I was upstairs when he called my name. I ran down as fast as I could to find him at the entrance to our kitchen hallway, sitting on the floor, which is always an indication of how bad the episode is. If he is standing, he is okay. If he isn’t, it’s more serious. It is at the on-the-floor point that his day could get better or worse. That day it got worse and for a horrible reason. He was told during his last trip to Seattle that his defibrillator charges for twelve seconds before it shocks him. In the past he has felt a rising sensation in his chest during the moments prior to a defibrillator shock, but we always assumed this was his heart’s malfunction increasing to the point the defibrillator decides it needs to deliver a shock. Finding out it is actually the defibrillator charging has led to an awful realization during those moments when Patrick is sitting on the floor. He knows now when it is coming. He knows he is going to be delivered a shock that feels like being hit in the chest with a bat by a major league baseball player. How awful that must be, knowing what’s in store for you in twelve short seconds. He told me it was coming. He groaned; was restless; held my hand in a vice grip as I used my other to rub his shoulders - the contact I have told you guys about before. The “I’m here” touches. The “I’m not leaving you” rubs. I put 9-1-1 into my phone in case I needed to call it. He told me it was charging, and then his yell of pain and the jolting of his body… Absolutely horrifying. I have mentioned to some of you who I have spoken with about this, that the cry of pain is embedded in my mind. To hear a grown man make that sound is truly terrifying. This time we knew the pain was coming. There was something about knowing the rising sensation was the defibrillator charging, that made this shock worse than in the past. Perhaps that’s why he yelled so loudly. Almost as soon as it happened it was over. His heart resumed it’s normal beating, although Patrick was exhausted. We continued to get ready for our day, and went to the shop like usual. I even took the kids home after a couple hours, leaving Patrick alone at the shop as we have been doing more and more over the last few weeks. The walls inside the Co-Op Plaza don’t go up to the ceiling. He reasons that if something happens he could yell and either patrons or shop owners would hear him. And again, before you come for me, I have stopped trying to reason with him. If he feels well enough to be left alone at the shop I don’t mind giving him that control over his own life. Actually, I’m not even *giving* him the control - that is the wrong wording. For someone who has lost control over so many aspects of his life, I have decided that sometimes his mental well being is more important than mine. He is a grown man of sound mind, capable of making his own choices. And so far, knock on wood, nothing has happened. That’s not to say I won’t drop everything to go to him when he feels an episode going on. Last night at 8:30p he was on his way home from visiting a friend of ours on the other side of Fairbanks, when he called me to say he didn’t feel well. He said he was well enough to drive home, so we ended the call. He called back minutes later and I got to the phone after two or three rings. I heard him say my name loudly, and I spoke with him for a few minutes as he processed the fears that he was going to get shocked again as the episode waxed and waned, much like the 27-minute v-tach several months ago that led to him being put under anesthesia to be shocked with the external defibrillator. At times he pulled over and put the van in Park, and at other times, during the low moments when his heart began to slow it’s malfunction and he felt better he would begin driving again. I was already calling for the kids to get in the truck. If he needed me on the side of the highway then, by God, I was going to be there. He was already a mile from home before I saw him on the stretch of paved road up ahead. The episode had passed already, but… If it hadn’t… The statistic is all over the internet. 75% of marriages fail when one spouse has a chronic illness. Ours will not be one of them. We take “Til death do you part” seriously. So where do we go from here? We endure another month and a half of him feeling like, “I have to make it to July 17th.” He has to make it. He has to get by. He has to survive. And with this downturn in his health, his stomach is acting up again. He is sick 24/7. His stomach cramps and feels like it is wrapped in tinfoil covered in needles, from every little bite of food. What a way to live. Mr. Happy Go Lucky isn’t so happy these days, but who would be when you feel like any day could be your last? I will end this post with this - my suspicion (and again, I am not a doctor) is that Patrick’s health is still on a decline. The downward slope is shallow, but colds and illnesses cause it to pitch downward, and we never know if it will level off again. It goes without saying, if you feel that you have an illness or cold symptoms that may be contagious, please love on him with words from six feet away. I fear he is at the point where the common cold will cause irreparable harm. In the meantime, you’ll find us at the park letting the kids play and trying to see how many times we can hit the badminton birdie and keep it in the air; going for our customary family grocery shopping trips at Fred Meyers, and going for walks in our neighborhood with our dog, battling this uncommonly bad Alaskan mosquito season. As I reminded Patrick last night, he is not yet in a hospital bed, so tired from his illness that he can’t keep his eyes open long enough to greet me. We may be at the point where all we can do is the next right thing, but while we have the ability to do it, we push through. Thank you for your support and your encouragement and love.