If It Looks Like A Duck

“If it looks like a duck…”

Patrick finally received one of the phone calls we have been waiting for - that one of his pseudo-heart episodes was indeed a true v-tach.

We haven’t particularly been looking forward to that call, but we did expect it at some point. The receiving of it has so many implications that it’s mind boggling.

First and foremost is the return of Patrick’s anxiety. The doctors talk of PTSD amongst heart disease sufferers who also possess an implanted defibrillator. It’s like standing behind a horse waiting to be kicked, with someone off to the side reminding you, “This will save your life.” Truly? But it will also be incredibly painful and traumatic? Sounds… fun.

And on top of the actual defibrillator shock is the period of time immediately preceding the shock - the build-up; the charging; the heart event itself. Trauma with a side of trauma, sprinkled with trauma.

Another thing this call brought to mind was Patrick’s mortality. Yes, we face that every day. But the return of v-tachs and the impending defibrillator shocks spells the return of the awful mantra that circulates in my mind (and likely Patrick’s as well), “The defibrillator will work until it doesn’t.

The v-tach happened Sunday night at 10:30pm. How quickly we have returned to worrying that he could die at any moment.

Other implications of the call include an immediate increase in the time the kids and I will be spending with Patrick. It helps with our peace of mind, perhaps mine more so than his. He has always been a “It Is What It Is” kind of person. He could receive his defibrillator shock while I am sitting beside him at our shop, or it could happen while I am in town and he is at home. It could happen At. Any. Time.

Before he left for the shop he said, "Keep your phone on you today." He says SO MUCH with those words.

"If there's an emergency I need to be able to reach you."

"If I'm going to die, yours is the only voice I want to hear."

"I'm scared."

I'll end this post with a request:

We have a list of people who have volunteered to help Patrick after he gets the heart transplant. And if I'm honest, the care he'll need may become necessary prior to the transplant, if his health declines enough. We would really like to see that list expanded - we want backups for our backup's backups.

We also don't know what his living situation will be in the two to four months he is expected to stay in the Seattle area post transplant.

As much as he and I dislike asking for help for even the smallest of things, we both feel the need to ask for enormous things should they become necessary.

• • • Are you or someone you know (very well) available to help with caring for Patrick and/or providing transportation in the Seattle area if he becomes unexpectedly weakened and unable to fully care for himself?

• • • Are you or someone you know able to provide him with a temporary place to stay while he initiates aftercare with the UW heart center, for two to four months after the transplant?

• • • Are you or someone you know confidant that you can handle a grumpy, ruggedly handsome (his words) invalid (my word) during his convalescence? Keep in mind I am fond of introducing him as the most annoying person I have ever met…

The upheaval for our family that would occur in the event I was the one who went to Seattle to provide care for Patrick, to us seems to be the worst case scenario. Without going into a long discourse, it would negatively affect the future of our family physically, emotionally, and financially. While not ideal, Patrick going to Seattle alone is what makes the most unfortunate sense to us in regards to the emotional wellbeing of our children, and the financial wellbeing of our family.

We understand what we ask isn't a minor detail. When I said in an earlier post, "It takes a village," I wasn't being facetious. It has been proven to us over and over that Patrick and I can't get through this ordeal with its multitude of unknowns, by ourselves. We need you - your prayers, your hugs, your phone calls; and someday, possibly soon, much more than that.

As an aside, here is Patrick's schedule of appointments (and approximate appointments for those that have been committed but not yet scheduled) for the next two months:

• October 26 - Flight to Seattle

• October 27 - 4 hour gastric emptying scan at UWMC Nuclear Medicine

• October 28 - Biliary scan at UWMC Nuclear Medicine

• October 29 - Flight back to Fairbanks

• Early November - Colonoscopy at FMH to finish ruling out cancer as the cause of his gastric issues

• December 5 - Flight to Seattle and a follow up with the heart failure specialist

Thanks to everyone for all of the love and support you guys bombard us with!

And The Stars!

Once again it has been a while since I updated. I feel like apologizing even though many of you would probably tell me that’s silly. But I know your information on how Patrick is doing comes from this blog and my prompt updates have been scarce.

I reviewed the previous blog post before beginning this one and not much has changed. Patrick is about five pounds lighter but holding steady at 155lbs. He seems to be sicker in his stomach and intestines for longer periods of time. Even this morning when I spoke with him at 6:17am he was laying in bed sick, and he hadn’t eaten for hours. The sickness is 24/7.

He also came up with a new word - paingry. Instead of hangry, he gets upset and his temper short when he is in pain. Unfortunately he is in pain round the clock. At the shop he said he, “Puts on a good show.” I’m sure that’s how it is for everywhere he goes.

I suppose I haven’t updated the blog because in part, the paingry is more present when we are at home and it’s just us - Patrick and I and the kids. Patrick’s personality is a lot to handle on a good day. That effect is multiplied when he is not feeling well. It can be hard to live with when he is in as much pain as he is these days.

So the mentality in the house hasn’t been the healthiest it has ever been these last couple of months.

Patrick did have the beginning of his official evaluation in August. He had been told by several doctors in the past that he is an excellent candidate for a transplant and that he would likely be put on the list at a high priority. He was told by at least one doctor during this visit that he would recommend Patrick be a 6 on the list, which is actually the lowest priority spot, because Patrick “isn’t sick enough” for a transplant.

That was hard to stomach, no pun intended. Seeing him so sick day in and day out made me want to scream, “Of course he is!”

But he hadn’t yet had an appointment with a GI specialist, which the evaluation professionals were telling him was a big part of the process. Sending a patient into a transplant while they have this other enormous side issue is apparently frowned upon. Who’d’ve thought?

In the meantime we were also told the GI consult would be at least two months out for anyone available in Alaska, and six months out for anyone available in Washington. That was also not ideal.

The week before Patrick was set to go to Washington again in September for his follow up with the heart failure specialist Dr. Mahr, a couple things happened. Patrick was told he would have an artery examination to determine the health of his veins and arteries. And he was told he would have a heart catheterization so they could examine the state of his heart from the inside.

By the way, this was his first heart cath performed through his neck, which nearly made me vomit when he told me about the process. I can’t handle the thought of Patrick in extreme, descriptive pain.

But Patrick also decided to be a squeaky wheel, and he was able to convince someone in Washington to go to someone else, who contacted someone else, who talked to someone’s nurse, who managed to get him a 7:30am GI consult the day he was scheduled for the heart cath.

Miracle of miracles. I almost cried when he told me.

Patrick flew out with our pastor on September 27th, and as this was the second time this man had accompanied Patrick on a medical trip, I came to a funny realization that many of you may be able to find humorous - I was glad there was an adult besides me who got to experience 24/7 Patrick. And oh, the tales I’ve been told! I am selfishly glad another adult has been subjected to Patrick’s own personal brand of public joking/humiliation attempts. I even suspect in some ways Pastor Judah was inflicted with worse than what Patrick dishes out when he and I are together.

After all, when Patrick introduces *me* as his wife, he’s not joking.

Moving on…

The heart cath went off without a hitch if you don’t count the insufficient numbing the initial two numbing shots delivered. When the (not-so-affectionately labeled) horse needle started to go in, he felt it. He required a third numbing shot.

Must be that thick skin of his.

He said a nice nurse named Zoe tried to distract him from what was going on and he requested the monitor be moved so he didn’t have to watch what was happening. As he was laying on the table with a blue drape covering most of his head, and the monitor likely being positioned just so on purpose, she just covered his eyes. I love Zoe, and hope being party to Patrick’s personality was a source of enjoyment for her that day.

Before I forget - the GI consult. Wonderful doctor from what Patrick tells me, but completely unhelpful because of Patrick’s condition. The meds he would have recommended Patrick take are known to cause heart issues like arrhythmias. So Patrick’s unofficial official GI diagnosis - SOL.

But Patrick managed to have fun even on the way home. He maintained that Pastor Judah had given him a hickey, which is why he had to have a big bandage on his neck for 24 hours after he left the hospital.

Ah, sweet sweet Patrick. There is no end to your humor, is there?

Life isn’t always fun and games, though. He has seen an increase in heart events, where his heart feels like it’s going to go into v-tach. He woke up one night with a racing heart, 130bpm. He suspects the ablation is going to fail soon.

And as I said in the previous post, we have everything else to deal with - the shop/businesses, schedules for two public schools and one homeschool student, a toddler who isn’t potty trained so who isn’t eligible for most preschools (not that we would have the time or opportunity to transport him to and from school, anyways…)

Life truly does go on, even while such heavy things weigh on us. Patrick worries over custom knife designs, things in our home that need work, tasks he hasn't been able to do or has put off. I worry about grades, about feeding the kids healthy foods, about the dog, my own custom wood orders, making sure the shop is full of products to sell.

But as I sit here in the high school parking lot and type this out on my phone, waiting for the dual-enrolled homeschooler to come out after class, to my left is a young chokecherry tree. It stands no more than 8 feet tall, and is covered in yellow leaves.

As I watch, leaves fall. One here. A couple there. Seconds go by before another one falls. And another.

So slow. So unhurried.

Like that chokecherry tree, we all face seasons in our lives that we can't avoid; seasons that will come no matter how much we wish they wouldn't. Patrick and I are in one of those seasons. As ill-prepared as we were for the hardships that continue to befall us, I feel like most times we weather it with fairly level-headed competence.

After all, heart failure has been our third wheel for seventeen years. As overcome by negativity as we can get sometimes, our only true choice is to take life one step at a time.

This Sunday I walked through the book section at Value Village with my 11-year-old. We came upon a book published in 1965, and she begged me to buy it for her. Ninety-nine cents. How could I deny her?

On the way home she read from it, and it was nothing short of inspiring. We turned the radio off and drove in silence, listening to her struggle through some words, not understand some phrases, but peppering her reading with quite a few statements of, "I love this book!"

The book is called "And He Walks With Me." We found it in the Religion section, and she was immediately drawn to it. I can see why.

"And the stars!

Look, there's the Big Dipper,

Pointing ever northward.

There's Orion, bright-belted hunter!

And those two glittering diamonds

Are Venus and Jupiter.

Just think, our Savior's eyes

Beheld these very same stars

These very same stars!

So, in the twinkle of a thought,

We can bridge time and space

And among the stars tonight,

Meet His loving eyes."

As a nurse, my mom used to tell me how religion was often a big comfort to patients in the hospital, and their families. I can see that now as an adult, because we live it. And if God sees fit to drop little gifts into our laps like that book, it only serves to draw us closer to Him.

Thanks again to all of you for your love and support. Patrick’s next appointment isn’t until December 5th. Please keep us in your thoughts and prayers!

Transplant Evaluation

It’s time for another update! And maybe a Mike's Hard Lemonade or two...

Firstly, Patrick is doing okay. He is holding steady at about 160 pounds but only because he forces himself to eat. He refuses to waste away. This also means he is sick much of the time, but he hasn’t let that stop him from making knives and ulus for our shop, or bringing our family to the fair.

There are a lot of things we don’t know yet, so if some of you may have questions, I likely won’t have answers. I will get into why that is in a moment.

Patrick’s initial transplant evaluation is scheduled for next week. Our pastor has graciously agreed to accompany Patrick. Not only are he and his wife where we turn when we need spiritual guidance, but they are also very close friends of ours. Since I will remain in Alaska running our business and taking care of our family, I am confident Patrick will have the care and companionship he deserves while he is away. The appointments coming up are important - another thing I will get into in a moment.

The unanswered questions regarding the timeline of the transplant will arise simply because there is so much we do not know yet. I find it easiest to visualize this problem as a set of bullet points.

• Transplant Evaluation

• Patrick Moves To Seattle

• Patrick Gets The Call That A Heart Is Available

• Transplant

• I Arrive In Seattle (Transplant Will Likely Already Be In Process)

• Recovery

• Patrick Comes Home

This is a very rough timeline, and it includes only the basics because they are the only details I know. And as you can see, they are very vague and very broad details.

As we move through this process there will be bullet points added. There may be bullet points removed. Some may be switched around. I am hoping to learn more next week during Patrick’s evaluation.

On Wednesday Patrick will have labs drawn followed by an appointment where they will discuss his caregiver support and social situation. This is one of the appointments where they require a designated caregiver to accompany him.

Then he has an appointment to discuss nutrition and how it will affect him both pre- and post-transplant. That appointment is followed by a CT scan that will either be of his brain or his brain and other parts of his body (I am unclear on this bit).

His last two appointments on Wednesday will be a palliative care appointment and a surgical consult. The description of the palliative care appointment says, “Our palliative care nurse provides support for patients and families dealing with the stress and symptoms of a serious illness. The goal is to care for the whole patient including physical, emotional, psychological and spiritual needs, and to improve quality of life.”

Then on Thursday he has a meeting with someone to talk about infectious diseases and how they can affect him pre- and post-transplant, and then a general transplant education meeting.

This is the beginning of a very long process. The journey our family is embarking on is going to be incredibly stressful and full of unknowns. We have known about the transplant evaluation for at least a week but I haven’t put up an update announcing it because it feels nearly impossoble a task to wrap my mind around what this means for us.

Because really - is a transplant a good thing or a bad thing? Is it cause to be hopeful, or scared? Again, how do we parent our children through this process?

How do I handle kids doctor appointments, dental visits, math tutoring, home schooling, public school schedules; AND doing what needs to be done to raise kind, honest, responsible humans; AND care for a husband living with a terminal chronic illness; AND prepare both for a life with him and a new heart, and a life without him?

And we have a dog.

And a house that needs work and maintenence.

And vehicles that might break down.

And two businesses to run.

Oh, did I mention being the emotional, physical, and spiritual support for my kids? Yeah, no biggie.

It may be redundant to say, but these are the things that keep me up at night.

We are on the right track. We are on the right track. One day at a time. One foot in front of the other.

It has taken a village to get us to this point. Thank you for being my village.