Celebrating a beautiful Alaskan life and living with heart failure!
It's game time! The Mexican food fundraiser and raffle is TOMORROW, May 20th!
** NEW GRAND PRIZE ** for anyone who enters the raffle - 2 round trip tickets from Alaska Airlines!
Stop by anytime between 12p and 8p for a full meal. Additional drinks are available to purchase at the Curling Club's bar, and we'll have a full kids menu!
Patrick is exactly seven weeks out from the day his transplant started, and while there have been a lot of improvements, exceeding doctors' expectations, and successes, there have also been a lot of disappointments. They seem to be on the forefront of our minds lately.
Patrick is barely sleeping. He has nerve pain in his right hand that keeps him up at night. He was given pain medicine and a sleeping pill but they don't help. He has to make the choice of being kept awake by the high from those medicines, or being kept awake by the pain and discomfort in his arm. He has chosen not to take the medications, which to him are just additional chemicals being introduced to his body that don't help him.
His providers are in the process of trying to push him through the pain management system at UW but Patrick is in line with likely thousands of people who want to get an appointment, so we have no idea when it will happen. I selfishly want it to happen before we go to see him in late June. A perfect scenario would be to visit a Patrick who is well rested and healing.
As it stands, he is healing but painfully. He says everything hurts - his hand, his sternum, inside his chest, and where he had a biopsy a couple days ago. He isn't supposed to sleep on his side because of where they went in through his sternum and how that needs months to fully heal. But sleeping on his side is the only way he can get an hour or two of sleep. It's hard to balance wanting rest and waking up in intense pain because his chest hurts.
The biopsy he had on the 16th came back again with No Significant Rejection. The results state there hasn't been a change since the last biopsy, which is great news! But again, it is overshadowed by how exhausted Patrick is.
The paint night fundraiser organized by our friend and the owner of Alaska Art & Soul was a great success and a lot of fun! The kids and I arrived early to help with setup and it was fun to help everyone get checked in and to get them the projects they had signed up for. I did tell a few who I was, but honestly I'm a fly-under-the-radar kind of person. That's nearly impossible being Patrick's wife since he is a look-at-me kind of individual. But sometimes I crave anonymity.
We also had the last planning meeting last night for the Mexican food fundraiser happening on Saturday. The kids and I will be in attendance for much of the day. We have a track meet the morning of the fundraiser so won't be there until after about 1pm. I am looking forward to seeing everyone, and to see so many people who love and care about our family working together. Our village is big and miraculous, and we never lose sight of that.
A big thanks goes out to our friend Jim in Seattle, who has tirelessly been Patrick's advocate and caregiver for the last three weeks. We feel the end of Patrick's need for a companion arriving, but want to acknowledge all that Jim has done for us. I am intimidated by the thought of Jim "passing the torch" of Patrick's care to me, but also feel that Jim has done a wonderful job at setting up that process so we will be successful. Jim, you are part of our family now. As Patrick says, you're stuck like Chuck.
I was telling Patrick this morning that this has been the busiest week of my life. I can't wait for school to end. The shop schedule has been a complete mess for the last four months, and I'm ready to delete the 5:45am alarm off my phone.
For everyone who has reached out, given support, and been a shoulder to lean on over the last month and a half and beyond, our thanks knows no bounds. I am eternally grateful for our village and our support network, and simply can't express enough thanks for how much it has all meant to me.
... Especially those of you who tirelessly stress self-care! The amount of grace and thoughtfulness extended to me over the last few weeks has been mind-boggling. From cancelling appointments to deciding on random days to not open the shop, my self-care has taken on many forms. Sometimes its spending an hour on my phone doing absolutely nothing. Sometimes it's putting Samuel to bed early so I can stay up watching true crime documentaries. And sometimes it's phone calls where I lay my heart out bare, thinking out loud through the tumult and unrest my mind exudes every day.
Thank you, thank you, thank you. We could not have successfully navigated this journey without our family and friends.
I have a feeling this is going to be a long blog post. I have a lot to say.
First things first - Patrick had another biopsy a couple days ago and the results were fantastic! His rejection rating is back down to a 0, meaning "No Significant Rejection." He is doing so well they cut his Prednisone (steroid) dose in half. (More on the significance of this later).
Patrick says he is feeling improvement in his body almost daily. He has steadily been increasing his walks, their duration, and their speed. He was dismayed at the lack of definition in his legs following his long hospital stay and is happy to report that when he stretches his legs out he can see muscle definition once again.
He is also excited in general about life. He feels God set him up for success in a very difficult way - causing his body to reject food so that 1) he could lose a large amount of weight, 2) lose the weight just prior to getting a heart transplant, and 3) being at a much lower weight so that after surgery Patrick could more thoroughly enjoy his new lease on life.
Patrick is making plans to re-enter the workforce in both the caregiving field and possibly the painting and drywall field, which many of you may not know was his entire life when I met him. Patrick either worked for, or was, a painting contractor for nearly three decades and was darn good at what he did. He misses the physical aspect of the job, and seeing the before and after work of his own hands. He misses a job well done and is looking forward to dipping his toes back into that career field.
And caregiving! Let's not forget that huge part of Patrick's life. He is toying with the idea of not going back to it full time, but instead finding more seniors who need care who also might not have the means to provide it for themselves. The truly needy, as Patrick says. A big part of receiving the gift of life is wanting to pay it forward, and he plans on doing that by ensuring seniors around him maintain their dignity as they age, and providing services for them such as chores, errands, and companionship. Too often local seniors aren't set up for services through an agency or can't provide these things for themselves. It weighs heavily on Patrick's heart when he hears of a situation like this.
We are also making plans as a family, which include camping, hiking, being more active in general, continuing work at our shop in Fairbanks, and getting back to being a two-parent household (THANK GOD...) Samuel will be needing a new bike this summer, and we are looking forward to spending every last possible minute together as we learn to live this new life.
Things haven't been perfect over the last week since Patrick was discharged. In fact they have been quite difficult.
One complication that Patrick has experienced is a marked decrease in his sense of taste. He is a self-professed chocolate addict, but recently it hasn't been tasting as good as it used to. He has been trying a lot of foods that he hasn't been able to eat over the last sixteen months and has found many of them taste incredibly bland. Some even taste like his medications.
He said the other day he tried some of the darkest, sweetest-looking strawberries he has seen in a long time and they were hardly sweet at all. Keep in mind we live in Alaska, where we often get gorgeous strawberries that are white as snow on the inside and tasteless. He was disappointed, to say the least.
I told him about a video I had seen of a woman sobbing over Oreos because she had suffered for two years from a lack of taste and smell post-Covid. She received an injection of a medication and was able to smell and taste Oreos for the first time in over two years (and I'm assuming other foods - I remember losing my sense of taste during our bout with Covid and it was disconcerting).
We both realized at the same time that it likely isn't the quality of the foods he is eating but that the nerve damage he is still struggling with in his hand could be showing up in other areas of his body, such as his tongue and/or taste buds. We are hoping it is a temporary.
For anyone that is wondering, the nerve damage is confined to his taste buds and his right hand. Patrick is pleased that all other areas of his body appear to have suffered no nerve damage. Read into that what you will...
Another positive outcome of this week in recovery has been the determination of the hospital to not enroll Patrick in at-home physical therapy. The reason why? His current activity level and expanded skill set exceeds the prescribed therapy normally given to transplant recipients. He is wearing t-shirts as opposed to the button-up shirts we figured he would be in for weeks, and he is back to walking. He even visited Pike Place Market with our friend Jim, parked a block away, and walked the steep uphill block back to the car when they were done.
"He's a machine!!!"
Okay, enough happy, sappy, lovey dovey stuff. Onto the nitty gritty - the not-so-pretty side of his recovery.
Can anyone say 'Roid Rage?
Prednisone rage is a real thing. Patrick has been snippy, snarky, and sarcastic.
He has inflated small issues, blown up over perceived wrongs, and said some things to me that would normally have him groveling, spouting profuse apologies.
And in the moment when these things were happening, I reacted POORLY. I knew he needed extra grace and understanding. I am supremely aware of the traumatic month he has had and the exponential spiritual, emotional, and physical transformation he is going through. I knew he would change.
But hurtful words hurt. Period. When it comes to Patrick, I have very thin skin. (Truthfully, it's with everyone. I'm sensitive and emotional. I have come to love who I am as an adult, but dang. Can't a girl get a break from tears?)
At one point just over a week ago I was reaching my melting point. And by "melting point" I mean mental breakdown. Life has been hard, and Patrick's negativity aimed at me - paired with the things I have been dealing with in our home life, parenting, and business decisions - were bringing thoughts to mind like, "I understand why chronic illness ruins marriages."
I have mentioned this before in the blog, and those thoughts reared their ugly head once again this week.
Here is my train of thought on those statistics:
Marriage is hard, y'all. It's a lifelong decision. It's a commitment. We've all heard it - sometimes marriage is 50/50. Sometimes it's 80/20 or 0/100. Sticking it out through thick and thin is a CHOICE.
But because it's for life, not only is it certain that rough things will happen during your marriage, but people CHANGE. You have to decide to love the person you're with KNOWING they will be a different person than what they were the day you met them, at year 1. At year 5. Year 10. 20. 50.
Sometimes you decide you no longer want to make the choice to love them and you decide the easiest route is to quit. And sometimes it's your spouse that makes that choice. Sometimes hardship proves too much. These things happen.
But sticking it out... For those who can, remember that soulmates are made in the trenches of marriage. It's a battle, sometimes constant. After digging your trench and making a home, bunking together, being in cramped quarters, sharing holidays and smokes (or not), sharing photos of family and bowls of slop during tight times, you become closer to this person than anyone you have ever known.
And all the while bullets and bombs are flying overhead.
Sometimes they hit their mark. Sometimes a bomb lands in your trench. Sometimes one of you gets a heart transplant, or cancer, or a disability.
But you're still there, together.
It's highly likely that one day I will need to be taken care of. I hope the person I'm with at that time is Patrick. The most unselfish thing you can do is to take care of someone else even when it's hard. But you would do it because you love them - because you shared smokes and slop.
So when he hurls a rare F-bomb at me in our trench, I let him sit in a corner and think about what he's done. (Mostly because my worst habit is stonewalling, which has been a self-preservation technique that I really need to unlearn).
And he comes back to me and apologizes, and we talk about his 'roid rage and how, "Maybe we should limit our conversations to the two hours just prior to you taking your meds."
Because those conversations are gloriously loving, and kind, and sweet. He calls me to say the best part of his day is hearing my voice. He says he misses his gorgeous wife.
I guess we're back to the happy, sappy, lovey dovey stuff.
That rabbit hole was deep.
I am over the moon at Patrick's progress. We get to go see him one last time before he comes home! We are flying down in late June and will get to spend July 4th with him. We opted for that travel window instead of early June hoping the extra amount of time will mean he has that much more healing under his belt and more energy to do things with us. We will obviously be dragging him back to the aquarium and the zoo since we have passes for those venues.
Patrick's sister Nan is still in the throes of organizing the May 20th fundraiser, and it's getting serious! We have had donations for the silent auction, a wonderful Mexican dinner menu planned by Nan, and will have a full menu of kid-friendly foods if that's what they prefer. Although later on we will be formally thanking everyone who donated to the event, a recent and big donation just came in from Quality Sales in Fairbanks, and we couldn't be more grateful!
I will update again soon!