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.

Turn And Burn

“Holy crap. The heart transplant people just called.”

I was still in bed this morning when Patrick called me to tell me this.

His turn-and-burn appointment in Seattle yesterday yielded few revelations that were valuable to us. It was a short face-to-face visit with the heart failure specialist, a simple two month follow-up from his last visit in May.

(And by the way, he is definitely a husband who should not be left to his own devices when it comes to arranging travel. Depart Fairbanks at 2am and back by 9:30pm? Talk about turn-and-burn. Are you kidding me?)

So as Patrick said this morning after telling me about the phone call, “Dr. Mahr must have poked the bear.”

The woman on the phone, whose actual position or title is unknown to me, told him that he should have gone to see the GI specialist a long time ago. A forty or fifty pound weight loss in several short months is especially concerning when it comes to someone who is in such failing health.

So that was her first order of business - arranging the referral to the GI specialist. They did already call back and said they are so booked that they will call him in a couple weeks to schedule an appointment. We don’t have any idea when the actual appointment will happen.

In the meantime he will have some sort of contact with someone about food choices, which foods are best for him to eat, and which foods he should avoid.

Third, she told him all they need to do to get the ball rolling on the screening process is financial clearance for the transplant itself. Patrick and I don’t foresee any roadblocks where that is concerned.

So, do we know when he will go to Seattle next? No. Do we know when he will be on the list? No. Do we know when he will be seeing the GI? No.

But we are hopeful. Nervous, scared, and intimidated by what’s to come, but so very hopeful.

P.S. He had another heart event this morning that certainly felt like a v-tach, but that according to Porter Heart was not in fact a v-tach. But that is neither here nor there. As long as Dr. Mahr says Patrick is ready for the transplant, we will focus our minds and heart in that direction.

P.P.S. I chose this photo because it represents Patrick's carefully controlled chaos - severe heart failure; constant stomach pain and illness; awful weight loss and too-big clothes... And yet he still works every day, still "saves the world" whenever he can, and still devotes his life to ensuring the kids and I are happy, loved, and provided for. He is an enigma, who apparently can't put his glasses on correctly...