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. 

The Power Of Positivity

“All my hopes and dreams are gone.”

That is what Patrick told me this morning. He had what he believes was a small v-tach before leaving the hotel for the airport. It’s the first one since the ablation.

He is so disappointed. He is praying it was a twinge; just part of the healing process. But deep down he believes it was a v-tach, and the ablation failed.

I know he also had high hopes that somehow the ablation would help his stomach issues. The last time he weighed himself at home he was 161lbs. While that is a healthy weight for someone who is 5 feet, seven inches tall, the fact that he has lost 55lbs in six months with no end in sight is disheartening, and he hates it.

He did well during the time he spent in the hospital recovering. He ate salmon and yogurt, both of which would have been impossible before he left.

But he also wasn’t moving, and he likely still had a bit of pain medicine affecting him. He told me this morning he had an egg and a piece of sausage, and any activity after eating still causes great discomfort. This time the cardiologist said he would write a referral for a gastrointestinal specialist. That appointment can’t come soon enough.

For the last couple of years it has felt like our family is in a state of flux. The constants in our lives are outside forces that we cling to - friends. Family. Church. Offered prayers. When this ablation felt like “fixing” Patrick could be too good to be true - really, what other option did we have but to hope and dream?

Patrick’s positivity is astonishing at times. Sometimes it’s a front for when he is feeling really hopeless. But often it’s probably the only thing that gets our family through. His positivity is like a lifeline. His statement this morning about his hopes and dreams being gone made me cry later, when I told a friend about what he said.

If our family was a mobile, Patrick would be the cross beam at the top. He is our anchor and our support. And I am the strings, held up by his strength but fully supporting the physical and emotional wellbeing of our kids, who hang at the ends of my sanity.

A gentleman came into our shop a couple days ago who was probably ten or fifteen years older than Patrick. He said when men watch their elders, and sometimes their siblings or cousins or friends, die for any reason, they often look at the world in terms of expiration dates. When will it be their turn? If so-and-so died at 60, will I make it to that age? Are my days numbered?

I explained that while Patrick may be preoccupied with similar thoughts, he has turned that outlook on its head. His favorite, morbid, go-to joke is, “I’ve got them beat.” Every day he prays he lives longer than his mom. 84. 85. 86. This fall he will be praying he makes it to 87. Lofty goals for someone who is expected to get a heart transplant in the next couple of years, but we all know what the alternative mindset is. And dwelling on our expiration dates, wishing they were printed on the outside edge of our left heel, is simply not healthy.

The power of positivity is indeed powerful. Never forget that. Be the ray of sunshine that Patrick is, and feel that power in your hearts, because a young, vibrant love of life is invaluable.

I will write an update again soon.

* Photo by KTVF *