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.

Updates!

We have had such an enormous influx of information over the last few days. I’m trying to wrap my head around all of it. [Pardon me while I copy & paste from updates I have already sent around to some of you]. “You’re not a good candidate for a heart transplant...” Cue Disappointed Patrick. “... You’re a PERFECT candidate for a heart transplant.” The specialist, Dr. Mahr (who must have one heck of a sense of humor), says Patrick is as good a candidate as they've ever seen. But they need to do their best to fix and resolve the other secondary issues first, because they don't want him to go through a transplant while under treatment for or suffering from the other issues (his digestion, how he gets sick when he eats, the extreme stomach and chest pressure he feels, etc). Patrick will start two new meds when he gets back and take detailed notes of every single symptom, BP reading, pulse reading, how he feels when he eats, etc. (I'll help him. I'm the spreadsheet queen). Dr. Mahr wanted a follow up on July 25th, when they can schedule a whole battery of tests and start him on the Transplant Track. But the results of yesterday’s stress test changed things in the eyes of Dr. Akhoum, the electrophysiologist. Patrick did better than expected during the stress test, wasn't shocked by his defibrillator like he expected, and his pulmonary function is stellar. He pushed himself to the point of almost vomiting so they stopped the test, even though his heart could have taken more. The results said that the area in which Patrick’s ablation was performed has improved enough that Dr. Akhoum would like to try a second ablation. But the overall function of Patrick’s heart is down enough that, after the ablation if Patrick experiences any v-tachs, they will expedite the transplant list process. One month. One month from now Patrick will have another ablation, and one month after that he might be starting the process to get on the transplant list. That hasty timeline is saving my sanity right now. Hurry Up And Wait is such an awful idea when considering life and death. He also had that in depth ultrasound and they didn't find any blockages, so right now the working hypothesis is that Patrick's heart can't pump enough blood to fully support his stomach during digestion. Hopefully those new meds will help those symptoms. Also, if the ablation does work and Dr. Akhoum is successful in stopping the v-tachs, the transplant will be postponed. It’s this up and down, back and forth, rocket speed and snail’s pace, that have frazzled my mind over the last couple of weeks. I can’t stand flip-flopping, and when I have control of nothing and have to endure this flip-flopping with grace… Well, let’s just say life hasn’t been very graceful this last week. Patrick comes home tomorrow as scheduled. He’s going to come home to a messy table, a covered kitchen island, dishes in the sink, baskets of clean laundry waiting to be folded, and floors not mopped. But the kids are clean, fed, and happy; the shop has been open and running as scheduled while he has been away, and the dog hasn’t eaten anything that will be missed (that I know of). Breathe. Just breathe.

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.