Heart Failure Is A Thief

A recent conversation about a deceased loved one's ashes sparked an interesting conversation between Patrick and I a couple days ago. We have had the obligatory "What to do with my body" conversation several times. Patrick is fond of a quick disposal preceding a big celebration of life party for him. He prefers cremation over burial simply because it's cheaper. But what to do with the ashes? He joked about how meaningless it would be to sprinkle his ashes around Amarillo, Texas, for the sole reason that that's where he was born. He has no emotional attachment to that location, or to any other location on Earth besides our small plot of land here in North Pole, Alaska. He has been talking about planting grass since last fall, when we rented a skid steer to spread dirt over a swath of our lawn that I had mangled the previous year. Long story short - I hacked at a decade-or-more old rock bed with a garden hoe to remove it, but caused nerve damage in my hand and gave up when the project was about 80% done. It had sat incomplete until Patrick found a good deal on renting the small loader and ordered a truckload of dirt to cover the mangled patch. ... In my defense, I had found peonies, delphinium, and rhubarb beneath the rocks, ready to spring forth once exposed to the sun. It was nothing short of miraculous. Imagine my disappointment when Patrick went weed whacker-happy and mowed them all down. This patch of ground has been a source of contention in our marriage. I wanted to preserve the plants and he wanted grass. Grass won. He told me today he wants to be sprinkled in that patch of grass, no doubt so that he can be his usual annoying self by rubbing in the fact that he won, even from the other side of the grave. (Not as vulgar as a F-You, but perhaps a self righteous grin). Although to his credit, and from his point of view, he plans on being tremendously proud when we get grass to grow in that area. Instead, I told him I would dig a deep hole, purchase a semi-mature crab apple tree (a dream of mine), and plant the tree in the hole atop his ashes. Then whenever Samuel climbed the tree we could say he was climbing his Dad. Or when we ate apples off the tree we could say we were eating Dad. Or if I made pies for friends, I could tell them they were eating Patrick. Morbid? Or hilarious? We had a good laugh over it. Patrick loves the evilness of the idea. The trickster in him is likely dancing around with glee, thinking of everyone who will benefit from sustenance derived from the minerals his body provides the soil. Okay, when I put it that way it sounds like a horror movie. But still, what a beautiful "headstone"! Humor is important to him and I. It's one of the most basic things we as humans can lean on when times get tough. A smile. A laugh. Jokes. Funny photos. Weird things our kids do. "Too Much Information" conversations we have with our friends that inevitably bring us closer together because we figure out we all have our own quirks. Humor is something Patrick says his heart condition can't take away from him, because *that* list - the things heart failure has robbed him of - is long. His health. Chasing his kids. Nature walks. Unbridled passion (he would strangle me for putting that here, but I warned you guys - "Vague mentions of our sex life.") The list goes on. His work life, which he adored. His clients, who became family. Even the once-clients who are now close friends. Road trips to Valdez. (When I told him that, he said, "There's a hospital in Valdez." I replied, "It's not Valdez I'm worried about. It's the drive to and from Valdez. I don't want to be administering CPR in the middle of nowhere with no cell service.") Yearly trips to Arizona to help his mom. Sledding with our kids. And most recently, the opportunity to show two of his grandkids exactly how amazing Alaska can be. That one hurt a lot. Heart failure has robbed him of so much, but there are things it can't touch. Humor. Patrick's ability to turn anything into a joke. And I mean anything. He has no filter. His love for his family - me, his kids (he has seven), and his grandchildren (he has nine). And our family dog, although if you ask him, he'll deny it. The love he shows his clients and once-clients. In a roundabout kind of way, he demonstrated this last one yesterday. And in my long-winded kind of way, I'll tell you about it. We were heading to Walmart to purchase some groceries for a good friend of ours; a once-client. He is a wonderful octogenarian - generous, funny, charming. We are blessed that he has welcomed us into his life. I put a song on the radio that I had heard earlier that day that touched my heart. It's called "Jireh" by Elevation Worship and Maverick City. It started playing as we pulled into the road that leads to the Walmart parking lot. Going through a storm but I won't go down; I hear Your voice. I wanted Patrick to listen to the lyrics. I always do because music has been a panacea I turn to that serves every emotion imaginable, but I'm pretty sure Patrick rarely does (when I tell him to. Rumor is he once had a girlfriend who made him listen to lyrics of sappy country love songs and now he detests the practice). Carried in the rhythm of the wind to call me out; You would cross an ocean so I wouldn't drown. The chorus began and he headed towards the far end of the lot, near the grocery door. He pulled into the first open handicap spot and put his foot on the break. That's when his entire body seized up - his legs bracing against the floor and the brake pedal, his fingers around the steering wheel and his arms pushing on it. He clenched his eyes shut in the universal sign of extreme pain. I don't wanna forget how I feel right now, On the mountaintop. Seconds passed, and he beat me by a fraction of one when I reached for the gear shifter. He slammed it into Park as a powerful V-tach ripped through his heart. In times like this I can do nothing. I battle between wanting to fly into a full-blown panic, and remaining calm; keeping even individual facial muscles from twitching or pulling so the kids won't feed off my own fear. So I put my hand on his chest, pressing down for reasons unknown to me. It just felt right. Maybe he would be comforted by my presence. Maybe he would feel my silent prayers. Maybe my love for him would somehow stop the attack. I can see so clear what it's all about. So stay by my side when the sun goes down. It subsided after… 10 seconds? 15? It’s hard to judge the passage of time during moments like these. His pacemaker had done what it was designed to do. But just as quickly as it faded, it came back. Patrick reached out to turn the radio down. I thought he would leave it playing softly but he turned the volume down to zero. I remember feeling bereft - that he was taking away my external source of calmness. Oh, the silly things you think during moments of helplessness. Later I looked up the lyrics to the song and found this verse.

I am not eloquent enough to describe why in the Bible in the Old Testament God is described as Jehovah Jireh. But it loosely translates from Hebrew to "The Lord will provide." And while I won't use this blog as a platform to evangelize, I don't mind talking about what faith has done for Patrick and I, more often than not in real world examples. This is simply because it is a part of us. But why was that song and those lyrics significant? There have been times where music saved us. Certain songs have given me comfort in the worst of times. A couple weeks ago the kids and I pulled into the driveway and finished listening to “We Don’t Talk About Bruno” from the new Disney movie Encanto. We had a minute and a half left, so I pulled in and put the van in Park. In that minute and a half, the snow slid off the roof and piled up on the spot where last year I had extended the patio by three feet. Had we gotten out of the car without listening to the rest of the song, it's possible two or more of the kids would have been standing there, waiting for me to unlock the door, when the snow came crashing down. Music saved us that day. There are songs that I have compiled in a mental list over my nearly four decades on this earth, that I can turn to when things get tough. And I will be adding “Jireh” to that list. There’s something about songs that speak of God’s love and His protection over us, that give me profound comfort in my greatest times of need. Earlier I said there was nothing more I could have done for Patrick in that moment, and that was true. As the attack finally subsided we both calmed, and eventually I went into Walmart with one of our kids to retrieve the groceries for our friend, all the while on the phone with Patrick in case he needed me. When we returned, I asked him if he wanted to go home and he said no. He insisted he was well enough to go see our friend, although we switched seats and I drove. More and more it is getting disconcerting that he can be hit by an event while doing nearly nothing. Sleeping. Sitting. It doesn’t matter. His heart is beyond the point where an event requires a trigger to happen, and that both disappoints and concerns us. We drove to our friend’s house and gave him the groceries, visited for a few minutes, and then watched as he walked back inside his cabin. We had planned on treating the kids to Costco pizza after picking up some medications at the pharmacy, so I suggested we go home instead. Patrick said no. “I won’t let this rob me of my life.” He was quiet for a moment as I started driving, and I knew he was deep in his thoughts. He added, “It has already taken so much from me…” I reached over and took his hand in mine. He is a marvelous man, ladies and gentleman. Every day I stand in awe of him. His strength, his commitment to his family, the things that give him joy - bringing frozen hamburgers to an elderly friend. Who is this man? This anomaly? This enigma? The man who smiles through extreme nausea; who laughs while his kidneys scream at him. Who refuses to let his condition steal the very parts of him that make him such a special person. He is Our Patrick. And he will be until the day he dies. I implore you to do two things today. Cherish him as I do. He is a gift to the world. You know it’s true - there is no other in this world the same as Patrick. He is unique. A gift to all of us. I’ll share (outside the bedroom). And second, be kind. That stranger on the street who is laughing, smiling, putting on a happy face. We’ve all heard it before - they could be suffering things we know nothing about. It takes very little energy to be kind, or to hold our tongues. Let’s make the world a better place and be kind to each other. P.S. Patrick was so uncomfortable last night that he drove himself to the ER. The attack he had at Walmart really did a number on him. He is home and sleeping now, but we are pushing for the University of Washington to take him for at the very least a follow up with the electrophysiologist, and eventually a transplant evaluation. I’m hoping to hear from them later this week.

Updates, Love, And Thank Yous

I have been really hesitant to post an update for a wide range of reasons, so let me begin by saying Patrick is doing well! He is in much better health than he was over the past few weeks, and is even at the shop alone. This is a direct reversal from our opinion last week that his days of flying solo, driving alone, and manning the shop independent of the kids and I were over. But I have put off posting an update because day by day, even minute by minute, I never know if something is going to change. Sometimes there is information given to Patrick by a provider that gets lost in the marriage-conversation translation. He just forgets details. Other times, he doesn’t ask questions that really do need answers, or doesn’t get information I would love to pass onto all of you. There are also times when one doctor says something and another says something else. Sometimes information changes. Care plans change. Or they stay the same when they shouldn’t. There are certain things I have written in this blog previously that aren’t true anymore, never were true, or… You get the idea, right? It can be frustrating. For instance, we were told he would be on the heart transplant list but at a low priority. It turned out later that that wasn’t true. He had met with the transplant team, yes, but the paperwork was never completed to finish the process. *sigh* That was a big one. Patrick’s current health and how he is feeling is also like a roller coaster - the big kinds that go up and down, that drop you from a hundred feet at sixty miles per hour and send you careening towards what looks like a drop off but that is actually a segment that corkscrews you into a vomit-inducing oblivion. It’s the kind that sends you through loop-de-loops, leaving your head spinning, and as the ride coasts to a stop you’re not sure if you want to hightail it out of there or get back to the end of the line for, “Again! Again!!” Sometimes I ask how Patrick is doing, and his answer sounds like, “ΣFr = N + mg = mv2/r → N = mv2/r - mg.” “That good, huh?” Because I never know. I truly never know. Sometimes he will tell me he is a 2 on his “Uncomfortability Scale,” but I squint my eyes, pick up on the twitch of his mustache, and reply, “So you’re actually a high-3 but you’re going to say you’re a solid 2 so we can have some husband and wife time tonight?” I see right through him. Other times it’s a bit more clear. His jokes get mean. He snaps at us for small things, like a pile of clean socks on the couch. He demands quiet while we’re riding in the van with a sugared-up three year old. Then there are times where his body twitches and his hand goes to his chest. His stare gets distant and I know he’s focused inward, examining his heart, his heart beats, the way his chest feels, the odds of another pacer-therapy, the odds of a stronger defibrillator shock, or the odds that it was a one-off and it will calm back down and he can pretend like nothing happened. Or when he takes hold of the shopping cart in the cereal aisle of Fred Meyer, rests his forearms on the handle, and drops his head. I watch his back as he takes deep breaths, calming whatever mischief his heart is up to inside his ribs, feeling the missed and irregular beats with each breath as it struggles to pump up against his lungs. Then there are the times when he chases Samuel around our kitchen island. Or when he belly laughs at Michaela as she squeals and squawks sliding down a hill at thirty miles per hour, her voice a pleasing and hilarious mix of terror and delight. Or when he smiles at me - truly the smile of a man who isn’t suffering from extreme nausea and chest pain - for the first time in weeks. I know that smile. I recognize it. It speaks to me; to my heart. It reaches his eyes. It extends his crows feet (sorry, Patrick). Widens his mustache. Wrinkles his cheeks. Reminds me why I’ve committed myself to this broken, special, defy-the-odds man. Think of all the platitudes you’ve ever heard of regarding love between soulmates, and you’ll know my heart. Boring, sentimental, inane platitudes. Love conquers all. Opposites attract. God has a plan. Age is just a number. *snicker* They lived happily ever after. If I could sit in that last one, like it was an eternal outdoor pool at a mountain chateau, and I could watch the sunset every night with Patrick for the rest of time… I would do it. But I suppose I was supposed to be updating everyone, and here I am waxing poetic. I must be in a mood. … Patrick is doing okay. That Uncomfortability Scale I mentioned earlier is a daily topic in our house. Some days it refers to heart episodes, and some days to his gastrointestinal issues - the bloating and nausea. But it’s always a good indicator of how he is doing. If you ask him and he says he’s a 3 or 4, that’s not an awful day. It’s doable. If he says he’s a 2, that’s a miracle. He is very rarely a 2. There have been times in the past few weeks when he has been a 9. Those are bad days. 7-9 makes me cringe. It makes me want to cry for him. Thank God those days seem to be gone for now. Between March 13th and March 19th I called 9-1-1 four times for Patrick. The first two were for defibrillator shocks. The second two were for extreme chest pressure, and because he had trouble breathing. He also went to the ER on his own once during that week. All five times he was sent home. He wasn’t admitted. (There was one ICU visit recently but it was short - just a few hours - and I don’t think it was during that week). The doctors would say, “Your pacemaker did its job, and the cardiologist is saying send you home.” That is so frustrating. One ER doctor even told him that’s standard procedure for when they can’t find the cause of what’s happening. Stamp the discharge paperwork and boot ‘em out. It’s frustrating for the family, and likely maddening for the patient who is afraid for his life. Despite feeling better this week (3-5 on the scale), Patrick went to see a doctor at TVC 1st Care. He explained what has been happening to him, and has already had an abdominal CT scan, and then two more CT scans to look specifically at his bladder and kidneys, and will likely have a procedure that sends a camera up his urethra to look for a kidney stone that’s too big to pass. Also, there’s a spot on his liver that they need to investigate. Oh, joy. Why did it take a visit to a primary care physician to find someone willing to help Patrick improve his quality of life? March 13th through March 19th was… *insert appropriate swear word here* As for Seattle, this improvement in Patrick’s health may mean he is still not eligible for a transplant. His broken, battered, bruised, used-up heart may be in too-good condition to warrant such an invasive procedure. He might be “too healthy.” But we have a referral in with the University of Washington cardiac center for the electrophysiologist who performed the May 2020 ablation, because a referral to the heart failure and transplant specialists will have to come from him. So with any luck, sometime before mid-May Patrick will fly down for a follow up with him. We were hoping it would be sooner rather than later, but it is what it is. Ah, another platitude. And as an aside, and to make this blog post as ungodly long as possible, I would like to thank you and apologize at the same time, because this blog has turned into so much more than a “Update The Gazillions Of People Who Love Patrick” blog. It’s my outlet. My diary. For those of you who may be new here, you’ll hear about Patrick’s body and what it chooses to do, our opinions of his medical care, gory details (when they eventually happen), vague mentions of our sex life (it’s pertinent), and everything in between. Because that’s Patrick and his Big Heart. All the crass, intimate, humble, loving, gory details.

Inadequate Care & A U-Dub Referral!

Just a quick update: They released Patrick yesterday and he spent all day feeling sick. I called 9-1-1 again last night and he went back, only to be released again this morning. A good friend of ours gave him a ride home. He is feeling constant PVCs and palpitations. His pacemaker must be working full time. He's scared. I'm scared. He keeps apologizing to me. I feel like a spectator. There's nothing I can do besides be here for him. I called the University of Washington Cardiology center, where he had the ablation in May 2020. A referral was sent to them yesterday by the Fairbanks cardiologist who keeps releasing Patrick despite his fears of being at home when events happen. They told me their referral process takes two weeks, so if I haven't heard from them in two weeks, call them. I asked to proceed with the referral for Dr. Akhoum, but also to set up a meeting with the transplant team. I don't know if it will happen, but a message is being sent to them with my request. It's like pushing for 100% performance knowing you'll get 25%, but I'll do whatever I can. I may also call FMH administration and see if I can go above the cardiologist to get Patrick admitted to the ICU. There must be a complaint process. I just don't know what else to do. I'll keep updating. Like I said, he's home and trying to rest now.