On The List!

Yesterday morning Patrick finally got what we have been waiting for all year - a number on the transplant list.

Yes, he is ON THE LIST!

The patients on the list have priority numbers from 1 to 6, 1 being the highest priority. Patrick is a 6 and has been advised to stay in Alaska unless he has a serious heart event. In the event he needs to go to Seattle immediately, he has a prepaid one-way ticket to Seattle ready to cash in.

We didn’t want him to stay here as a 6, both of us figuring a donor heart should be given as little time as possible outside a human body. But under the advice of his heart failure specialist and with the reassurance that as a 6 Patrick will be given an 8-hour window to get to Seattle, it is what it is.

Does this mean Patrick will have to wait years to get a heart? No. The last patient they had from Alaska who was a 6 actually got their heart in two months.

The process of determining which heart goes to which patient is complex and I don’t know all the details. But other than his current heart, Patrick’s body checks every box on their list of qualifications for a perfect candidate. And if a “perfect” heart comes around that they deem is a match for Patrick, they will call him.

Imagine all of the determining factors that go into that process - blood type; gender and age of the donor; the direct medical needs of the possible recipients; location of the recipient - and so many more that the transplant team has to take into account. I can’t wrap my mind around it.

So Patrick might be called in a week, or a month, or several months. He has been told it's likely the heart will come available within a year. But if his health deteriorates further he will be moved up the list, and will use that one-way ticket to move to the University of Washington transplant house.

I am both hopeful and terrified. I suppose it will take some time to come to terms with this new development.

And in the meantime life goes on. Yesterday we had a doctor's appointment and errands. Today is Art Club and arguing with the 11-year-old about grades. Every day I drive the homeschooled 15-year-old to choir class at the high school. We have a backlog of custom orders for both the knife store and the woodshop. Patrick sits at the shop, making small talk with customers.

On the outside I believe it appears we have our sh*t together. We take one step at a time. One day at a time. Insert other idioms here - we roll with the punches; we go with the flow; we see where the wind takes us.

But on the inside we’re as messy as the next family. Our deck furniture never made it to the shed for the winter. The bird feeder is empty. We never got around this summer to reorganizing our garage into more than a knife mess, a wood mess, and a path in between the two messes to the front door.

We don’t often do so badly at this balancing act we call life. But I like to believe this last year we prioritized what's important.

We supported our church family, and flourished under their love and prayers.

We focused on what each child needed and planned our family life around those requirements.

We loved on our customers and happily started our 12th year in business in the Co-Op Plaza.

We put our marriage at the top of our priorities.

Patrick and I are coming up on our 17th wedding anniversary. We don’t mess around with “In sickness and in health.” I said those vows as a 21-year-old and still mean them with every ounce of my being today. There is no one else on this earth with whom I would rather do life. He is my priority.

Our next update will either be that Patrick got the call that a heart is available, or that his health has declined. Or perhaps it won’t be as exciting as those. Either way, thank you for reading and keeping up with his journey!

One Day At A Time

Buckle up. This is a long one.

We have had several weeks of ups and downs, mostly due to scheduling. It has been one headache after another. Patrick isn't exactly holding steady in his symptoms but I'll talk about that later. 

In the last blog post I announced Patrick was going to leave for Seattle for his gastric scans on October 26th. We found out on the 25th that those appointments were canceled in favor of the scans being done in Fairbanks. 

This was abrupt and disappointing. Patrick's discomfort has been increasing, and this abrupt postponing of scans that had by the grace of God been scheduled for the end of October, would now be put off indefinitely because they had to be done in Alaska. 

The rest of that week was spent soaking in high amounts of stress, prayer, and desperation. 

Patrick had a follow-up appointment with his Internal Medicine primary care physician scheduled for Monday. Patrick is loquacious at best - I tell people he is the Chatty Cathy of the family. But he is talkative in ALL situations, and through all emotions. That includes anger. (We established early on in our relationship that he is a “steamroller,” and I am quite the opposite!)

On the morning of the 31st Patrick was heated like a freight train that had lost its brakes. Burning red hot, his anger and desperation had cost him sleep and peace all weekend, only adding to the extreme symptoms he already endures all day, every day. 

He was spoiling for a fight, and said he already had his words planned out for the doctor. The fight he was anticipating was the fight for his life. The canceled scans were being scheduled months out in Alaska, therefore indefinitely prolonging Patrick’s suffering. This delay would postpone the scan results getting to the transplant team in Seattle, and if those results are delayed, so too is the decision of whether Patrick is eligible to be put on the transplant list. 

Also delayed is the eventual resolution of his symptoms, however that might look. This could mean getting on the list earlier than expected and getting a transplant, or it could look like finding cancer or another cause of his gastric discomfort and pain. In many cases both would lead to treatments. 

But sometimes it feels like the only people really pulling for him and supporting him are the ones that don’t have anything to do with his medical care. When it’s a medical professional’s wording on reports that we perceive as inconsiderate of Patrick’s struggles and poor quality of life causing these scheduling snafu’s, I’m as outraged and as desperate as he is. I feel like his closest ally - at his side, my hand on his shoulder like a team of firefighters about to rush into a burning building. 

And if the scans were to reveal cancer? That is a bridge we would cross when we got there. But it’s a bridge we would rather have in our sights than continually waiting to see if it’s around every corner in our path. 

Patrick left for his appointment and I nearly succeeded in not thinking about what was happening at the doctor’s office. The scenarios playing out in my mind varied from the doctor dropping Patrick as a client to law enforcement being called. Patrick is nothing if not a passionate man. 

His text came in at 8:35am. 

“[The doctor] was amazing and took all my anxiety away in one fell swoop.”

Cue the sudden drop in adrenaline and the rush of endorphins!

He told me she said all the right things - that she understood, that she cared, and that she would do everything in her power to schedule those scans before he was scheduled to meet with his primary doctor in Seattle, the heart failure specialist. She said she understood his anxiety and understood the urgency to get the scans completed. She said she would try to get all the scans schedule in the two weeks following the appointment.

Lofty goals, and goals that eventually were a bit more spread out than we had hoped, but she achieved the ultimate one - to have all the scans completed prior to December 5th. 

Patrick had his first scan, the gastric emptying scan, on November 2nd. (This is where I added the note at the top to buckle up. This is going to be lengthy).

We knew from the initial instructions for the Seattle scan that he had to eat a meal containing radioactive isotopes so they could watch the food move through his system. The seattle instructions said it would be a jelly sandwich and an egg sandwich.

When I tell you the amount of fear this instilled in Patrick and I was through the roof, that might be putting it nicely. 

If he eats a cracker he feels extreme stomach pain within minutes. A bite of a kids pizza crust here or there can make the pain excruciating. And if he indulges more than that, the pain is such that it radiates between his stomach and his heart in a connection he can’t explain, which makes him fear v-tachs. And when you fear a v-tach and have an implanted defibrillator, well… The conclusion is obvious.

So for a hospital to instruct him to eat that amount of food, even though at Fairbanks Memorial we found out it was just a couple eggs and a piece of toast, we were terrified. We asked people to pray because to Patrick and I, this spelled disaster.

That morning he called me to say he had eaten the food and was nervous about the test. His stomach was already starting to hurt. It’s terrible to know your spouse is in pain and being powerless to stop it.

He called an hour later to say that something odd had happened. He said the pain had risen to a 5 or a 6, when he is normally about 4 or 5 these days, but then it had GONE BACK DOWN. 

Back down.

To a 4.

Solid eggs and an entire piece of bread… and he was a 4.

Call it a coincidence, or whatever else you want to call it. There was no pain medicine, and the only thing making those eggs different was the radioactive isotope in them. 

We call it a miracle.

And if I may say so, over the years I have become more of a “Things happen for a reason” person, mostly because of Patrick’s medical journey. For instance, in 2007 we went to Anchorage because it had been determined that some of his two-year-old pacemaker leads may have been malfunctioning. He was due to go under the knife in a couple days when he began telling me he was beginning to think that something was wrong, or that something bad was going to happen if he went through with the procedure. 

I, of course, believed he was nuts and that he was just scared and attempting to talk himself out of the procedure. I was also about 37 weeks pregnant so needless to say, I wanted to get it over with and go home to my OB and the delivery of our second child.

So we ended up in the pre-op room with a wonderful nurse. If memory serves me right this is the nurse that Patrick pranked and the result was that she smacked him. She was poised to insert the IV needle into his arm when he jumped, scaring her. And to this day I feel zero enmity towards her. We laughed, she said she was a mom, and told him to never do that again.

When she was done with the entire pre-op process she left the room, only to come back a short time later to apologize and tell us Patrick wasn’t on the doctor’s schedule so the doctor didn’t even know he was at the hospital waiting. She told us we would hear from them about rescheduling the procedure.

Instead someone called us and said that same doctor had seen Patrick hadn’t had a heart cath done in two years so he ordered one to be done prior to the pacemaker lead procedure.

During that heart cath they found Patrick had four blockages in his arteries that needed to be addressed.

Four. 

And when they opened his chest to perform the surgery they ended up doing six.

Now, imagine if Patrick had been put under anesthesia, his body already stressed due to heart failure and inflicted with even more stress of a procedure that required implanting the ends of these leads directly into his heart tissue. Imagine that procedure being done with six blockages in the heart.

So do I think someone was watching over us in those days, when we assumed our visit to the Anchorage hospital would be in and out? I absolutely do. Call it God, call it the universe, call it anything you want. But Patrick was not meant to have that procedure the day the doctor didn’t have Patrick on his schedule.

(As a side note, five days later I went into labor and delivered our second child on another floor at that very same hospital. Patrick’s nurse wheeled him up so he could be there. That’s our second birth story. Quite unique!)

So call it what you will. I believe things have played out in Patrick’s life exactly the way they were supposed to. This includes things that have happened in the past, things happening right now, and things Patrick is currently going through that will be used for a purpose in the future. 

Patrick’s gastric emptying scan showed nothing out of the norm, so the second scan done on November 8th was a biliary scan. This one also went off without a hitch, and the results came back perfectly normal. 

One thing I would like to note here is the wide range of emotions going on inside my mind upon hearing the results of a biliary scan. Yes, normal was good. Yes, it means we move onto the next scan and proceed as planned. And I would never want a negative result from one of these scans. One of the things they are looking for is cancer. The C word. Horrifying in its own right.

But upon hearing the biliary scan was normal the fact that we were one step closer to the heart transplant brought instant tears to my eyes. 

One step closer to Patrick getting on the list.

One step closer to Patrick moving to Seattle without us.

One step closer to the call saying there is a heart available.

One step closer to the do-or-die surgery that could save Patrick’s life or end it.

I have talked to a lot of people about this journey and one thing I always say is it's a bittersweet one. The things we look forward to are accompanied by unimaginable hardship. At times it feels unfair. At others, miraculous. There may come a day when someone else’s heart beats inside Patrick’s chest. How much more awful and how much more wonderful can a single circumstance be?

I often say, “One day at a time. One step at a time.” That reminds me of the Serenity Prayer Patrick and I memorized when we were doing Celebrate Recovery so he could enter the local jail to do prison ministries.

God, grant me the serenity

to accept the things I cannot change,

the courage to change the things I can,

and the wisdom to know the difference.

Living one day at a time,

enjoying one moment at a time;

accepting hardship as a pathway to peace;

taking, as Jesus did,

this sinful world as it is,

not as I would have it;

trusting that You will make all things right

if I surrender to Your will;

so that I may be reasonably happy in this life

and supremely happy with You forever in the next.

Amen.

We live day by day right now, waiting for the next step, and the next step, and the next step. Right now that’s a colonoscopy on the 18th and whatever discomforts and hardships Patrick will have to endure in the day or two leading up to that procedure. 

And God willing, soon after that we will have an official transplant list determination. 

In the meantime we wait and we trust in God’s timing. Patrick endures his PTSD from so many defibrillator shocks, and I watch him suffer, helping when I can. The kids and I deal with his “paingry” as best we can, and we laugh and smile on the good days when he's a 4/5 instead of an 8/9. 

I’ll update again when I have more information, possibly not until after the December 5th appointment. So in case I miss it, happy holidays and have a great Thanksgiving!

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!