Overwhelmed With Life - Patrick's Declining Health

I recently read an article that described death as a, “Heart-stealing, soul-sucking asshole.” I know this to be true. And with the events of this week fresh in my mind, it seemed relevant to share here. After my last post Patrick declined rapidly. The illness paired with a bad heart sent him back to the hospital. There are two things I would like to preface those details with before I lay them out for you. First, I do not know hospital policies. I don’t know by what criteria they decide who to admit for observation and/or treatment, and who to send home. But I’m fairly certain that a cardiac patient with a recent history of v-tachs and who is besieged by an awful illness causing more, powerful v-tachs, should not be sent home. And second, as evidenced by the events of Wednesday night, sometimes the “paramedic team inside Patrick’s chest” is not sufficient to keep his heart in normal rhythm. Things go wrong. Things get scary. Telling him, “Your pacemaker is doing its job,” seems insensitive at best. Especially when it is proven mere hours later that it is in fact NOT doing its job. As I said earlier, Patrick didn’t feel safe at home. His heart was still acting up and he felt sickness through his entire body. At 8:30p he decided to drive himself back to the hospital. He left, and I messaged our church’s prayer group, requesting prayer. Patrick called me at 8:56p to tell me he was just a couple miles from home and his heart was acting up. I asked as I always do, “Do you want me to call 911?” He said to wait, but it was a bad one. It intensified, scaring both of us, before it began to subside. He almost hung up the phone when the episode began to intensify once again. I could hear the fear in his voice. I messaged the prayer group at 9:02p, “Please pray, he’s so scared. He's having a bad episode.” “I’m worried I won’t make it to the hospital.” He cursed, telling me he was pouring sweat. The fear in both of us grew. He said his heart was burning. I think he and I were both questioning his decision to drive himself. “Do you want me to call 911?” By this time it was 9:03p, and he said he would rather try to make it to the hospital than park and certainly die on the side of the highway. I was powerless. We were both crying. He told me he loved me and that he didn’t want to die. Two minutes later - an eternity - he made it to the hospital parking lot and hung up. I messaged the prayer group, “He never should have come home today, they never should have let him go.” I spoke with a friend of ours, and then our pastor’s wife, and messaged back and forth with a few others. Our friend and church networks, though they may not realize it, supported me through yet again one of the hardest times in my life. At 9:19 Patrick called. I was so relieved. He was alive. I thought he would be telling me that he was fine and they were going to keep him overnight. But his voice was scared and uneven, and I could tell something was still wrong with his body. “I love you. They’re going to shock me. My heart -” “You need to hang up the phone,” I heard a woman’s voice say in the background. “Is that your wife? You can call her later.” “I need to go but I love you, Haley. I love you so much.” I’m not even sure if I was able to say it back before he hung up. Shock him? That sounded… Horrifying. But if it's what they had to do to get his heart to go back into a normal rhythm, all I could do was lean on the fact that God had him, and that he was in the best place he could be for a time like this. He called again at 9:38p to let me know they had to use the external defibrillator twice on him to get his heart to slow down to a normal rhythm. He was sedated although he swore he was awake for the whole thing. It didn’t work the first time so they had to do it again. So you tell me, how was his pacemaker “doing what it was supposed to do,” if he was in a v-tach episode for thirty minutes? It’s by the grace of God that Patrick is here today. It has been several days and I’m still upset over the whole thing. I found out that our friend was able to be with him when the hospital staff shocked him, and I am so thankful for that. I can't imagine being scared and alone, afraid he was going to die, with no familiar face in that emergency department room. For our friend - you are a Godsend. Our pastor was allowed to sit with Patrick when they moved him to the ICU, and I finally received some more information via text. He said the cardiologist adjusted the levels at which Patrick receives corrective pacing and shocks from his pacemaker/defibrillator, to lower those thresholds so we don’t have a repeat of this event. He also said that Patrick was saying he knew what he needed to do - that Seattle might not wait until September like we had hoped. He also addressed something that brings tears to my eyes - whether Samuel will remember him if he dies soon. Remember when I said that death is a heart-stealing, soul-sucking asshole? Death doesn’t care if not enough memories have been made, not enough photos taken or videos created. Death doesn’t care if goodbyes haven’t been said, kisses and hugs not given. Our pastor said he has a memory of his own father from when he was three, and he assured me Samuel will remember Patrick. I have to hold onto that - to cradle it close to my heart when I am faced with fearful times in the coming days. Patrick has a larger than life personality, so it stands to reason that the memories he and Samuel have made thus far will be so powerful that they will remain embedded in Samuel’s mind for the rest of his life. Patrick came home Thursday morning. He said the cardiologist he saw in the hospital told him, “You’re out of options.” He explained that the Seattle doctors say he is not a candidate for a repeat ablation because his blood pressure dropped dangerously low during the last ablation. I can’t remember the specifics, but Dr. Akhoum from Seattle told me over the phone that the blood pressure dropping happened when they were doing what needed to be done to pinpoint the exact parts of Patrick’s heart that needed the ablation. So the ablation he had done was their best effort - not exact science. But because of this, a second ablation isn’t feasible. So Patrick is back on the second and only other medication he can take to reduce ventricular tachycardias. And when it stops working, he will need to go to Seattle immediately. It’s always nice when there are medical providers who don’t mince words. Patrick doesn’t appreciate sugar coating. He wants the bare naked truth. So he is home for the time being. He and I both seem prone to meloncholy, when thoughts of his condition invade our thoughts and bring us down. I noticed he was in one this morning, and as usual wanted to make him smile. “I’ll wipe your butt until the day I die,” I said. “I’ll even use the toilet paper you prefer.” Because in marriage there should be no secrets - no topics off limits. I made him smile, yes, but I also added, “I will take care of you. I love you.” He is obviously not out of the woods. I may have mentioned in a previous post that he basically operates with nausea and bloating every single day. Some days it's worse than others, but it is always there. Food triggers it, and drinking any fluids. Today he was getting through his day, feeling reasonably well while sitting at our shop. Before he left he took a drink of water and immediately began to bloat. Then his heart started to race, before the pacemaker kicked in and paced him back down. Water. A drink of water led to a v-tach episode. “Your pacemaker is doing what its supposed to do.” Yes, but when will that not be enough? Some days I wonder what will be the straw that breaks that camel's back - his heart malfunctioning, or his decreased quality of life? When he is no longer able to eat solid food because of the discomfort it causes, or when he has an event that sends him in an ambulance to the ER and he is medevaced to Seattle? We had a good run of uneventful years. It’s like living on the Ring Of Fire. We know this here in Alaska - how many recent small earthquakes have we sat through, that have awakened us, spooked our dogs, swung our chandeliers? I first heard when I was in elementary school that we are overdue for a Big One. Patrick is overdue. It’s coming. I need to create an evacuation plan. I need to pack our bags, make sure we have batteries and water, survival food. I need to prepare our kids without terrifying them. I need him to write down what goes to his two oldest daughters, and what goes to his oldest son, and what goes to the younger children he and I share. We need to write wills. I need to research immunocompromised, and heart transplant recovery. I need to… I need to… I need to... *Photo is the first photo I ever took of Patrick, January 11, 2005*

Transplant - Sooner Rather Than Later?

September. September? SEPTEMBER. Oh God, September. I asked Patrick a few days ago, "When you decide to go to Washington, will you please give me ample notice?" He blurted out, "September." It turns out he had also recently been thinking about it. The whole scenario of making this choice to go to Washington for a transplant feels eerily similar to what a terminal cancer patient might go through. Pursue treatment and *maybe* extend your life? Or forgo treatment and enjoy what's left? Although, the treatment Patrick is going for is a win/lose treatment. He either wins or he loses. There is no "attempting" a heart transplant. No chemo to bandage a failed attempt. If it fails, he's gone. Obviously there are no guarantees in this. Some days it feels like life is a game of Battleship and Patrick is laid out on one side of the board, waiting for the strikes that hit their target. B-6, miss. D-3, miss. F-7, direct hit. Ventricular tachycardia, "You've won four defibrillator shocks." Will the next miss its target, or hit it? Will it be cardiac arrest or a call that a heart is available? In this game of Battleship there is no cheating - no sneaking peaks at our opponent. They hold all the pieces and are the only one who gets to guess where their moves will hurt Patrick the most. These days our yoke is heavy. Sometimes I feel we bear our parts evenly, while at other times it changes. I can't imagine facing my own mortality. I can't imagine knowing the single most important organ in my body is failing me - that when it goes, I go, and I don't have the privilege to know exactly when that will be. At other times I feel my part is heavier than his, simply because I will be left behind if Patrick dies. He goes on to enjoy eternity and I'm left sad and alone to raise four kids, run our businesses, operate on a daily basis as though life can go on without my best friend by my side. Widow. Single mom. The thought terrifies me. These thoughts are never more concrete - never more intense or real - as they are after an event. And that happened this morning, just hours after I wrote the beginning draft to this blog post. Yesterday Patrick developed flu-like symptoms. Congestion. Body aches. Trouble breathing. He took two nebulizer treatments between 11pm and 4am, but they barely helped. His cough was bad; unproductive and painful. He said he was going to see a doctor this morning when he woke up. But I was downstairs this morning after putting our oldest on the school bus when I heard a coughing fit begin. I waited a few seconds to see if it would stop, because I wanted Patrick to have as much sleep as possible. It didn't stop, so I went up to see him. He coughed for several minutes and then sat up suddenly, saying something was going on with his heart. It didn't take long for him to tell me to call 911. I put the oxymeter on his finger and told the woman his heart rate was 150, but after several minutes it dropped below 100. She told me medics were on the way. They took him to the hospital. I found out later that he had another episode in the ambulance but it was short - 28 seconds compared to the 6-minute episode of this morning. When he arrived at the hospital he was fed and allowed to take his meds. He had fluid in his lungs but that started to go away while under their watch. The end diagnosis is that this happened because of the stress his body is under from this illness. The prescription? Rest, sleep, water. The kicker? He is still having v-tachs today and is scared. He almost wants to demand they keep him for observation. But I still have so many thoughts. I'm scared this will push our plans forward... Our plans - September. These episodes, his heart being paced out of v-tach, and defibrillator shocks all further damage and strain his heart. We had so many plans for this summer. Visiting grandkids, growing our shop, a Valdez road trip, painting our stairwell, renewing our marriage vows, and lots and lots of family videos and pictures. I can't see into our future and now I don't know what will happen and what won't. We will have to bump up our planning for the future. I have two plans that need to be fleshed out. The first one is for when he gets the transplant and comes home to recover. The other is for if he doesn't come home. Both will need written details, financial plans, resources contacted and aligned for ease of use. We have to talk about cardiac therapy and funeral plans. Lifelong medications, and what to do with his belongings. Plans for our future together, and therapy for the kids. Vacation plans and grief groups. I'm sure we will spend the next few months in varying states of feeling like we're drowning. It's very likely that in a few days Patrick will be back to our version of "normal" - caring for his clients, spending time with us, shopping for the pure joy of feeding his inner social butterfly. All while having a heart that probably resembles a 1987 Ford Tempo that was stripped for parts, run over by a monster truck, and then sunk to the bottom of a lake. You know what a car looks like that has been dragged out of the muck and mud after sitting there for decades? Unidentifiable green goo in its crevices, rusty and jagged holes, and maybe a skeleton or two... I imagine that's what Patrick's heart looks like. The doctors are going to remove it and Keith Richards is going to slither out. Maybe we could bring it home for show and tell in a vat of formaldehyde. Or not, since the cardiac center will probably want to study that anomaly and figure out how the broken, beat down organ managed to run Patrick The Positivity Powerhouse. As always, we want to thank you for your prayers, positive thoughts, and well wishes. Some days they are all that gets us through. That, and A&W root beer and chocolate - Patrick's two current addictions. When anything happens, I'll write about it here. He hasn't had a major episode since October, and God willing, it will be a while before he has any more. Stay safe, everyone!

A Glimpse Of My Worst Fears

On October 24th at 10:43pm I called 911, because Patrick told me to. In the spirit of transparency and to eliminate the possibility of further embarrassing discussion surrounding the events of the evening, I will tell you we had been intimate about 10 minutes prior. At the time of the call we had settled into bed, gotten comfortable, and Samuel was asleep between us. Everything seemed fine. Everything seemed normal. Patrick had returned from a very short, fairly stressful trip to Arizona that morning, just after midnight. He had a full night of rest before we went to church, and we spent the rest of the day together as a family. Everything was as it should be. Until he reached over, took my hand, and said something was going on. I know by now that when he says that, it means he is feeling something going on inside his chest and that it is likely his heart. Often it amounts to nothing. A palpitation. An extra beat. A missed one. Sometimes I will put my fingers on his pulse in his wrist and we will sit in silence, waiting for our worst nightmare to come true. Most of the time I can’t feel the error going on inside his heart. With a pacemaker working full time, it's just enough of a correction that all seems well on the outside.

On the night of the 24th it took Patrick an alarmingly short amount of time to tell me to call 911. And for those of you who know him well, you likely know he won’t do that unless it's REALLY bad. So obviously I panicked. What happened next is a bit fuzzy, and the parts I do remember, I wish I didn’t. He began breathing hard, his body moving like he was in an immense amount of pain. I had the light on and Samuel remained asleep while I spoke with the dispatcher on the phone. I even put it on speakerphone because she was asking questions he could very easily answer himself. And he did. Rudely. Was he breathing? Of course he was. Was he in pain? F*** yes, he was. Was he clammy? All Patrick wanted to know was when the F-ing paramedics were going to get there, and he said that very loudly. She assured me they were on the way, and I think that was around the same time his eyes rolled into the back of his head, he arched his neck, stopped talking and breathing, and I thought he was dying. I thought I was losing him. I thought the love of my life was dying before my eyes and I was powerless to stop it. I began to cry. I ignored whatever it was she was saying, because I didn’t want to spend the last moments I had with him trying to sort through the nonsense she was saying. I stroked his face. I called out to him. I could barely see him through the tears. I think I told him not to leave me. That I wasn’t ready. I later found out he could hear me crying and talking to him, but he couldn’t answer. He couldn’t see me. He was awake and mostly aware of what was going on around him, but he couldn’t move his body or react in any way. Then he blinked, and his neck relaxed, and he looked up at me groggily. I could feel the adrenaline rushing through me. It’s understandable that I couldn’t comprehend the passage of time. What we thought was a minute or two, was actually four minutes and twenty-seven seconds of ventricular tachycardia that should have killed him. It’s a miracle that it didn’t. He recovered quickly, after I was certain he was awake and I was sent on a mad search for uncoated aspirin. I was a mess. I brought back the coated baby aspirin because it’s all I could find, only to realize he didn’t have his dentures in and couldn’t chew them. I have since bought a bottle of the correct aspirin to keep upstairs, and Patrick has showed me where the correct one was downstairs. During the search for aspirin, our ten-year-old came out of her bedroom. I’m pretty sure she saw me mostly naked, that poor girl. Clothing is the last thing on your mind when you are trying to save the life of your spouse. Shortly after she came out we dressed, and I told her to go back to bed. That Daddy was fine and the paramedics were coming to check on him. But she had seen enough. She knew something was wrong. We haven’t hid Patrick’s condition from the kids. Quite the opposite, in fact. They know the perilous hold on life his heart has, and how his outward appearance doesn’t match the poor quality of his heart’s health. They know he can’t get really stressed out. They know he takes medication to stay alive. They know we have a future full of doctor’s appointments, surgeries, and a high probability of a father who dies young. Patrick and I have agreed that it's better to keep them aware now than to let it catch them off guard later. They are smart kids. We wouldn’t do that to them. The ten-year-old did go back to her bedroom but didn’t go back to sleep while I let the paramedics in and found my glasses. By then Patrick was fine; fully recovered from the event and ready to put it behind him. The medics checked him out, stuck electrodes to him, took readings and compared notes. Whatever they saw on the papers coming out of their machines told them he was in the clear. That didn’t matter one bit to me. I wanted him to go in. I wanted him to go to the hospital where I knew he would get the proper care. All I knew was I had just watched my husband come close to dying, and he was telling the paramedics he didn’t need them to bring him in. I. Was. Furious. The evening had been traumatic, to say the least. His face as his eyes rolled back into his head flashed into my vision again and again. The agony of feeling his life was slipping away filtered through my blood - the adrenaline waning but the anguish fully present. And he didn’t want them to take him in? He was being absurd. Ridiculous. An idiot. I wanted to rail at him. Our fourteen-year-old came out of her room and I ushered her back in, telling her Daddy had had a heart episode and was refusing to go to the hospital. I told her he was fine but that he was being stubborn. But oh, the thing I wanted to say instead. There are some words our kids have never heard come out of my mouth, but I wanted to say them at that moment. I left her in there and went back out to the kitchen, but gone were the usual smiles I had for the medics. I couldn’t even pretend. I made sure they had the information they needed - Patrick’s current list of medications; who his primary care doctor was - and I left the room. There was nothing I could have said that would have prompted him to go to the hospital. We were back in bed at 11:45pm. The two-year-old had never woken up. He was a good buffer between us in bed. I think I could have strangled Patrick for not going in, as strange as that sounds. But I couldn’t sleep. My mind wouldn’t quiet. Words and sentences and conversations floated around, begging to be written down. It was an interesting phenomena - my emotions screaming at me to be recorded on paper. This is what I jotted down: “The highs are high, and the lows can be unbelievably low. Between the moments where seemingly innumerable obligations and responsibilities tug, pull, and yank on me from all directions, threatening to tear me into a thousand pieces, I've come to appreciate the monotonous moments of contentment. “The cup of coffee in the morning in the silence before anyone else has awoken. The short period of time after I’ve left a store and I’m sitting in the truck, groceries loaded, a song from my childhood serendipitously playing on the radio. When I look out our living room window at our incredibly bland view and enjoy the peacefulness of living the rural life. “Tonight, however, was an unimaginable low.” I knew it was the start of a blog post, but honestly I haven’t felt like writing about this until now. The turmoil going through my mind as I thought he lost consciousness while I was on the phone with 911, was too raw. Too big. Last night we had a really hard conversation. I started it, but I needed to. I needed to ask him hard questions and to hear his thoughts. I wish I had recorded it, because it’s not a conversation many couples are forced to have. I asked him how he was going to decide when it was time to go to Seattle. He has doctors up here saying living his life to the fullest, and wait until the last possible moment to go to Seattle for the heart transplant. But he has doctors in Seattle saying do it now; don’t wait. Take that leap of faith because we don’t know when his heart will decide it has had enough. How hard must it be, I wonder, to feel like staying here is a death sentence, and that at the same time making the commitment to have a heart transplant could also be a death sentence? The ultimate, “Damned if you do. Damned if you don’t.” That choosing to go to Seattle could be, without us knowing, choosing to end his life? Because heart transplants aren’t a guarantee. Things go wrong. Bodies give out - during surgery, after surgery, during recovery, etc. It happens. Not every heart transplant is a wonderful answer to what was previously a horribly unhealthy, uncomfortable life. In Patrick’s case, for instance, he is not living that sort of life. Certainly, he can’t eat big meals because it makes him feel sick, and the slightest overage of sodium causes him to question, is this it? Is this how it ends? He can’t ride the Slingshot at the fair with his kids. He can’t go on roller coasters. Ziplining is probably out of the question. Adrenaline isn’t his friend. We have to choose where we live in terms of how long it takes to get onto the highway and to the hospital. We can’t go on overnight hikes into the wilderness. In fact, a two or three hour hike away from the road system makes us nervous. That all really sucks, because if someone were to meet Patrick on the street for the first time they would assume he is healthy. Patrick has an almost invisible disability. As of right now Patrick has decided to stay here. I pointed out that that is essentially letting the decision be taken from him. One day his heart might decide to stop, and he will have given up the opportunity for a heart transplant because he has chosen to live out the rest of his life with his family, whatever quality and quantity of life that might be. Or his heart could become so sick that he has no choice but to go. Those are the options he has chosen. Even I can’t see making the choice to move to Seattle temporarily while waiting for a transplant, while he can still ride a bike with his younger children here; or while he can fly to Arizona and see his older kids and enjoy his grandbabies. It’s like a horrible game of Risk. Which risk is too great? Which risk is acceptable? In the meantime, we live life as normal as possible. I complain about his shoes leaving dirt throughout the house, and he complains that I haven’t washed his blue shirt. I ask him to handle breakfast so I can shower in peace, and he asks that I make his favorite salad dressing while he’s at work. I want to thank each and every one of you for being on this journey with us. I don’t write these posts for sympathy, or to showcase Patrick’s troubles. I write because it helps me. It’s therapeutic. And I have another avenue to complain about my terribly annoying husband. Before I forget… Four minutes and twenty-seven seconds. Patrick should have died. A heart in as poor condition as his shouldn’t have the ability to survive such stress. So instead of shocking him back into normal rhythm at 170 beats per minute, they lowered that to (I think) 160. I wasn’t at the appointment, so I’m not exactly sure of the numbers. They changed both the pacemaker settings and the defibrillator settings, but Patrick couldn’t remember which was which, or both sets of numbers. But I do know he will likely be shocked more often, with the lowering of those settings. And the heart doesn’t like to be shocked, but it likes dying even less. Another damned if he does, damned if he doesn’t scenario. So, when something of note happens I will write about it here. Hug your loves ones. You have no idea how long you have with them.