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...

Here We Go Again :(

"Onward and yonward!"

For those of you who don't know who Nature Cat is on PBS, this is one of the cartoon character's catch phrases. 

I feel like it should become mine.

Patrick had a big heart event yesterday evening. It was about 10pm and we were watching TV. It came on fast, and while it was happening I didn't actually believe it was happening. 

That is, until Patrick's arms dropped and lifted, dropped and lifted. That's when the tears came.

We have a call in to Porter Heart for confirmation that it was indeed a v-tach, which the ablation was supposed to stop. But since it happened again today at the shop at 2pm, we don't really need that confirmation call.

Onward and yonward. 

The ablation was a failure. One doctor was hopeful, while the other said it was the most difficult ablation he had ever performed. This does nothing to dampen our confidence in the U-Dub team. 

Onward and yonward.

Patrick still has his appointment in Seattle on the 25th. We likely won't hear anything from the cardiac team until that day, which is why I chose to write another post - to get this out of my head. To relieve pressure. To share this burden of disappointment with everyone who loves us so much. 

Patrick is talking in terms of not having a lot of time left on this earth. I'm talking more in terms of his extended stay in Seattle while he waits for a transplant. Sometimes I feel the doom and gloom, but I at least want to plan heavily for that segment of our life. I want to plan for it like it's guaranteed to happen, and he won't leave me a widow sooner than we expected. 

So over the last 24 hours we have spoken of innumerable subjects - verbal preparations for the physical hardships we may be forced to endure sooner than we anticipated. The house, the shop, finances, fuel, potty training our youngest, lodging for Patrick, my inability to make knives. 

Onward and yonward, Haley. Onward and yonward.