Delta Squad, Roll Out - The Eagle Has Landed!

Let me begin by announcing that Patrick made it to Seattle yesterday and has his first appointment, an echocardiogram, this morning! Thank you, Jesus - we were so worried he wouldn’t make it. My last blog post was on April 20th. So much has happened in the last 19 days. Patrick tried a liquid diet and found it didn’t make any difference in how sick he gets when he eats or drinks. He also discovered if he boils vegetables down to mush, he can create a soup that makes him less sick than just about everything else. I made a comment in my last post about Patrick having to slow down and how that goes against his nature. For the last seventeen years he has refused to allow heart failure to slow him down. I always say, "You would never know his heart is failing, just by looking at him." He is a man who is always in motion. He always has a project going at home, or a customer's knife to work on. He is always out helping a client or a friend with whatever they might need. He loves to go shopping. Lord help me, does that man love to shop. But this recent downturn in his health has forced him to slow down. I still wake up and find laundry washing and the dishwasher running, but home projects have decreased. He isn't taking custom work, and we thank God for the extra time he spent in the garage during Covid working up an inventory for the shop. It has eased his burden considerably. At the time I wrote the last blog post, family shopping trips had also, and their pace had slowed down. Sometimes they were cut short. Walking from one side of Fred Meyer to the other would steal Patrick's energy. He refuses to ride a motorized cart. All of that goes against his fast moving, social nature. He says he won't let heart failure rob him of his life, but that's exactly what it was doing. Over the last three weeks that has improved. We have gone out walking at Pioneer Park after work several times and he does okay. I have seen him roughhouse with the kids, and belly laugh without feeling like it was going to trigger a heart event. We haven't been able to get answers as to why food makes him sick, but we may be closer after his recent trip to the emergency room. This doctor said Patrick likely suffers from what is knows as stomach angina. He said Patrick's heart is too weak to fully support the second most powerful organ in the body; the stomach. He recommended lighter foods and even meal replacement drinks. Patrick tried the drinks but they make him as sick as if he had just eaten a regular meal. So, gone are his taco nights, his grilled burger dinners, and the meals where he grazed on the kids leftovers. He has lost twenty five pounds in just a few months. He tried drinking warm jell-o and it gave him painful chest pressure. He boils his vegetables until they are beyond recognition, and while they still give him nausea, its better than anything else. Except granola bars. His body is like a riddle. Tell me, why can he eat granola bars without becoming nauseous? I have talked to him about his weight loss a lot. He is down nearly 35 pounds, probably now weighing what he did when he was in his 20s. If the doctors can’t get his weight to stabilize, I wonder if he may not be far off from needing a feeding tube. So that’s life right now. Chaotic, stressful, busy as always. I put off writing an update post because I didn’t have the emotional capacity to devote so much time to writing about what has been going on. This last week has been one of the most stressful times of my life. He has the echo today, and a meeting with the heart failure specialist on Wednesday. Then on Friday he has a follow-up with the electrophysiologist who performed his ablation in May 2020. What are we hoping to come out of these appointments? We want his medication tweaked. Two or three doctors up here, especially the one who diagnosed Patrick with stomach angina, have recommended a course of nitroglycerin. But they won’t prescribe it because Patrick often has blood pressure that’s too low, and nitro lowers it even further. At any given time Patrick might have anywhere between 80/50 and 110/70. If the doctors in Seattle can tweak his blood pressure medications, or any of his other prescriptions, maybe they can find a combination that would enable Patrick to take nitro. Although we are not doctors, Patrick and I suspect he won’t qualify for a heart transplant. I think we would feel okay with that if the doctors could somehow improve his quality of life. Not being sick enough to qualify isn’t necessarily a bad thing, but living with constant nausea and the plethora of other heart failure symptoms that Patrick endures every day is… There are no words. I have front row seats to his suffering. This isn’t the life we envisioned having together. Please pray for him. Keep him in your thoughts. Send good vibes. People say it takes a community to raise a child. I say it takes a community to provide a solid foundation for a family going through what we’re going through, to get by day after day. And we love our community. We appreciate you - the silent readers and those who reach out; people we run into while out and about; the ones we attend church with; close personal friends; family members. You all are like a buffer, the squishy, inflatable bumper as we zigzag our way down the lane towards the invisible pins at the end. Some of you are the ramp, guiding us. All of you are the crowd, cheering us on. We appreciate you.

Positive Outlook

Well.

... Well...

Imagine me sitting at the computer right now, interlacing my fingers and then stretching my arms forward, palms rotated out, as eight knuckle joints synchronously pop.

Snap, crackle, and pop. Have I got a story for you!

I will preface this post with, "Patrick is okay." He is home and resting. Not moving. Inanimate, which goes against everything he believes in. (More on that later.)

He had a rough night, the night before last. He had alllll the symptoms - chest pain; chest pressure; extreme nausea. He couldn't sleep. He would lay in bed because he felt being close to me was safer for him than if he passed out on the couch, alone.

Also, laying flat is terribly uncomfortable for him in times like this. He can feel every single skipped beat, extra beat, and flutter. When he sleeps on his stomach he says it feels like his heart is pumping hard enough to wake me up beside him. And his c-pap? That machine that is supposed to deliver life-giving oxygen to his lungs so his heart doesn't have to work ten times harder during the night when he stops breathing? It quadruples the chest pressure, making him feel like his chest cavity is filling with air.

He is in an untenable position. How can he not use the machine that greatly improved his quality of life for so many years, because now it makes him feel like he's dying?

Yesterday morning he woke up feeling at about a 5 or 6 on his uncomfortability scale, when the night before he had been hitting 8 and 9 all night. So, that morning was okay. Slow. We had plans. He woke up at 7:45am and we snuggled and played with the 3-year-old for fifteen minutes. Then we got ready for the day, and Patrick had an egg and a piece of toast for breakfast. He took his morning medicines at 9:00am and sat at the table, calling a friend.

In the middle of that phone call he suddenly called my name, and honestly, the events surrounding that approximately sixty seconds are a bit of a blur to me. He called my name and grabbed his chest, and scrunched his face up in pain. I ran to him, aware that the 3-year-old and the 11-year-old were across the table.

Be calm. It will pass. Don't panic. I tell myself these things every single time.

I put one hand on his back, one over his heart, and stood with his shoulder against my chest, desperately wanting my physical contact to comfort him while he goes through what most of us will be blessed to never face.

All this time I was watching the phone on the table, seeing our friend's name on the screen, knowing the call was still connected. He could hear what was happening. I didn't know what to do.

The episode needed to pass. Why isn't it passing?

Patrick was moaning, saying it hurt, saying it was happening, that it was coming. I was so scared that somewhere around this time I remember saying something to our friend and jabbing the End Call button, as though that was an important use of a half second of my time. It wasn't.

"Oh, God. It's coming," Patrick ground out through clenched teeth.

I knew what "it" was but I am still never prepared for it.

When the defibrillator shock came his entire body jolted. His legs extended, kicking the space beneath our table. His arms flailed out, one connecting with and grasping for my arm and the other... It's so hard to describe. His hand sought something to hold onto and I watched as time after time it came into contact with nothing but hard table. Pat, pat, pat. Reach. Slide. Clench. Unfurl. Pat, pat.

I panicked. Was this a lack of awareness? Was the blind groping a sign that I was losing him? Had his heart started to fail, his body losing control, and his mind losing its grasp on reality? Was I going to have to drag him off the chair and start pounding on his chest, probably agonizing the entire time if I was going to break through his sternum, weakened and wire-bound from his bypass in 2007?

Oh, God, I thought. And Lily is watching.

Just as those thoughts hit my consciousness his hand found a box of my sign making supplies off to the side, and I watched as he grabbed onto the top edge, his white-knuckled grip screaming at me that he was in agony.

"Call 911! Call 911. Oh, God."

He barely got the words out as I scrambled to turn on his phone screen and find the keypad. I hated to take my hands away from him, and just as I dialed, he felt a pain in his heart that made his body jump. When his arms squeezed together to wrap around his torso, the box of supplies went flying, scattering everything at my feet.

The event slowly began to subside as I spoke with the medic, who could hear all of Patrick’s pain-filled sounds, answering questions I had answered countless times before.

Yes, he was awake and aware.

Yes, he was having trouble breathing.

Yes, he was having trouble speaking.

I was already getting the chewable aspirin when the dispatcher asked me to wait. He said, "I'm not really familiar with implanted devices."

That's okay. I had done this before.

As Patrick chewed four baby aspirin, the dispatcher gave the go-ahead for Patrick to take them.

The 11-year-old had taken the 3-year-old upstairs, so when the dispatcher hung up I unlocked the front door, locked the dog upstairs, and brought out a phone charger. The medics arrived in record time, which seemed like a miracle.

Patrick was able to walk out of the house, and I watched from the front door as they rounded his truck. Then I went back inside, locked the door behind me, and stared at the ceiling.

What a life. What a way to live.

I'm sure Patrick wondered what life with advanced heart failure would be like, and so did I. But that didn't prepare me for the reality of it.

The tears. The discomfort. The fear for his life.

"Remember the overflow pipe on the back of the washer needs to be pushed back down every couple of months. And don't forget to change the filter (on the lift station)."

"... Are you preparing me for you dying?"

"Sort of."

The conversations.

As I'm writing this, it is 3am on Thursday morning. Patrick woke me up at 2am, indecisive about whether he should call 911, drive himself in, or just sit and wait while his heart betrayed him from inside his chest.

So far he has chosen Option Number 3.

Seattle. Oh, the thoughts I have about that mythical place I've never seen.

Mistakes were made last week. We made mistakes. Porter Heart made mistakes. The insurance company would refuse to admit they made mistakes.

We could agonize over the Shoulda, Coulda, Woulda's, as Patrick calls them, but what good would that do? What good does it do to think about how, if we had managed to get a plane ticket at the last minute, all of this would have happened in Seattle?

There is no point in dwelling on it.

Right now Patrick's quality of life is nearly rock bottom. But he is here, joking and laughing between painful pangs of angina and the throbbing of a heart that's struggling to do its job.

Today I give thanks that I'm covering him with a blanket because he is always cold.

Today I give thanks that a couple weeks ago I found a 3-pack of bottles of chewable aspirin.

Today I give thanks that in Patrick's greatest times of need, I can be there when tears fill his eyes and he reaches his hand out to me for the comfort of physical contact.

So many unexpected blessings. We need a positive outlook.

U-Dub Snafu - Trip Postponed

Patrick didn't go to Seattle today and his appointment has been rescheduled.

Yes, we are disappointed.

No, we couldn't control this.

No, we are not out of our minds with stress.

The travel wasn't figured out in time, and we're not quite sure who exactly dropped the ball on that one. But as Grumpy Cat says, it is what it is.

God's got this. We are calm and collected. Maybe that is because he is already rescheduled for May 9th, May 11th, and May 13th for ALL of his appointments - the echocardiogram, the heart failure specialist, and the electrophysiologist. He will be gone longer, but everyone will be on the same page.

In the meantime he will continue losing weight somewhat unwillingly, we will aim to keep stress levels down so we don't induce any v-tachs or a-fibs, and we will find humor in every day life, and make each other laugh until we cry happy tears.