One-Year Transplant Anniversary

[Photo is Patrick and our 16-year-old at the 2024 Fairbanks ComicCon]

Today is Patrick's one-year heart transplant anniversary! Our five-year-old and I are sick with a terrible cold, so this may not be as long or as eloquent a blog post as I had imagined for this occasion, but I'll do my best.

Patrick left for Seattle on March 19th for his one-year follow-up, which included multiple scans, tests, and labwork. He checked into UW on the morning of the 20th and completed his biopsy, labwork, and echocardiogram. Then he went back to the hotel to try to get some sleep, after having barely slept the night before. 

He received a call that afternoon stating that his CBC came back with dangerously low numbers and that he was to be admitted to the hospital immediately. Everything was low - his white blood cells, his red blood cells, his hemoglobin, etc. - and they needed to find out why. 

It turned out that he had Rhinovirus and somehow it caused his numbers to tank instead of increase. But with a decreased immune system, this virus could kill him.

While in the hospital they gave him one Neupogen shot, which is a medication that stimulates the growth of white blood cells. It is often used with cancer patients, and couldn't have come at a better time. Patrick's white blood cell count was 1.3, when a normal range is 4.5 to 11. 

In the days he was at the hospital they watched his numbers and decreased one of his immunosuppressant medications, his Mycophenolate. This would give his body enough of a chance to build up a immune system to fight the virus while the Neupogen did its job. 

By Friday, March 22nd, Patrick's white blood cell count was up to 2.03, and he was in fine form. Meaning, he bugged and harrassed and begged and annoyed them (in true Patrick fashion - with kindness) until he was given permission to be discharged to make his flight home Saturday morning. His Mycophenolate was reduced from his original 2,000mg to 500mg, with strict instructions to repeat lab work in Fairbanks on Monday morning. The kids and I picked him up from Fairbanks International Airport on Saturday. We had missed him terribly.

On Monday we brought him to the hospital for labwork, and in just a couple hours he was told his WBC was back down to 1.3, dangerously low. And his transplant coordinator didn't even know he was in Fairbanks. She called him to tell him to get back to the hospital because he needed to be admitted. And when he told her he wasn't there anymore, she said it was unheard of for the team to release a transplant patient in his condition.

Good ol’ Patrick. I was actually quite upset all weekend, and even more so after his lab results on Monday.

After some drama at Fairbanks Memorial Hospital where Cardiology had no idea the cancer center administered Neupogen all the time (and panicked because they thought they couldn't give Patrick what he needed), a shot was found and he went in at 5:00pm to receive it. 

And the next two days were ROUGH. That afternoon we went grocery shopping and Patrick felt weak. He described it as the sensation he felt after being shocked by his defibrillator. That was discomfiting to both of us - that he was experiencing something we had hoped would be gone forever. 

That night his feet burned. It was different from the usual symptom he experiences when he has a lack of sleep - the stinging sensation. 

And the lethargy and “off” feeling slowly went away over the next two days. On Wednesday, March 27th, he repeated his labwork and his WBC was up to 2.9. Still low, but much better than it was! He had been doing so well with the reduced Mycophenolate and that first Neupogen shot that they decided not to repeat it at that time.

Unfortunately our 5-year-old had spent the entire previous night coughing, and on Wednesday I could feel the first symptoms of a cold starting. It has only gotten worse since Wednesday. The two of us are staying home today from Easter church service, and Patrick has our oldest three with him in town. 

This is part of what we signed up for - managing illnesses, and keeping away from Patrick whenever anyone feels any kind of cold symptom. The five-year-old is missing Daddy's hugs and snuggles, so since we're both sick he has been getting extra from me. 

Patrick will repeat his labwork tomorrow and we will see where he is at with his numbers. I am worried about the reduced Mycophenolate dose and the increased risk of rejection. UW called Patrick to schedule an emergency CT scan, the scheduler obviously not knowing he's here in North Pole, Alaska, and not in Seattle. So they will work with FMH to possibly coordinate the CT scan up here. 

Also, his doctor would like to repeat the biopsy, and there are tests that Patrick wasn't able to complete because he was admitted to the hospital while in Seattle. So at some point we believe he will be called back down to Seattle to complete those. 

In the meantime we are a family walking on eggshells. We are doing everything we can to keep this cold away from Patrick, which includes a lot of saving Patrick from himself. I caught our little boy drinking from Patrick’s cup the other day and had to point it out to Patrick. He is also used to picking up my opened soda cans and dumping them into his large cold-cup, and he did so with one on the counter before I reminded him that I had already drank from it so it was contaminated. 

We will get through this. We have spent the last nineteen years not hiding from his symptoms, and at every turn facing the possible consequences with clear minds and gentle planning. We have had cause to say recently, it would suck for him to make it a year out from his transplant, only to die of a cold. 

I don't know when I will update the blog next. If we get negative results tomorrow from his labwork I will definitely update, but if they are positive and going in the direction we want them to, I might hold off. Likely, because I'll be in bed asleep with a cold! But just in case - no update means we received good results. 

I started this blog on December 12, 2019. My dad had passed away two days earlier, and Patrick had been admitted to the ICU on the same floor as my dad, although on the opposite side, to begin Tikosyn, the dangerous arrhythmia medication. As Patrick was fond of saying in those days, writing helped me cope. We gained some followers in those early days of the blog, and appreciated every read and comment.

Then, after struggling in isolation during our Covid diagnosis, on March 23, 2020 I went public with our Covid experience, to help me cope with what we were going through but also to combat the rumors that Covid was fake. The news picked up that story and the blog gained yet more followers. 

Throughout the years I informed and entertained you with the blog, posting anecdotes and thoughts, funny Patrick-isms and the goings-on of our family. 

Then on December 6, 2022, the real work began. Patrick was on the transplant list. 

And through it all we gained more followers, more support, more friends, more love, and a village we continually and increasingly leaned on through the hardest moments:

December 23, 2022 - Call Number 1, "Steve"

January 13, 2023 - Call Number 2, "Alex"

February 11, 2023 - Call Number 3, "Brandon"

March 20, 2023 - Call Number 4, "Jayden"

And the one that Patrick will carry with him for the rest of his life:

March 30, 2023 - Call Number 5, "Andrew"

We have not forgotten the four men who passed away, and whose hearts Patrick did not receive. We still have a huge amount of love and gratitude for their families. 

Andrew lives on with us, and he and Patrick make a great team. 

To those of you who have been with us since the beginning, to those of you who have joined us part way through this journey, and to those of you who will find us after this anniversary post, we thank you. You are our village. We couldn't have done this without you, and your love and prayers in the future will forever be our lifeblood. 

And if you see Patrick, bring on the fist bumps. His immune system is extremely low and he can't fight off infection at the moment. 

Feel free to tell him to take his a** home!

Hanging In There

We are long overdue for an update.

Patrick just passed 7 months post-transplant, and recently had his 9th of 12 biopsies. His September biopsy showed mild rejection, graded at 1A (the lowest grade possible above zero rejection), and his October biopsy showed a decrease in that rejection and he was given no grade at all. Also, he was told there was no rejection.

He said; she said. I’m just glad it’s less than last time, whatever the amount of rejection is.

Overall, Andrew’s heart is doing amazing. Patrick and I spoke about it last Sunday while driving home from church. He said, “I still can’t believe I have his heart in my chest.” At the time we were talking about the differences in our lives pre- and post-transplant, and he just interjected with that statement. I know he thinks about it a lot.

I have seen him grab his chest after physical activity, waiting for v-tach, or the horrific anticipation he felt when the defibrillator was about to go off. I, too, remember the trauma. He doesn’t have to worry about that anymore, and neither do I.

A few days ago we ate a meal notoriously high in sodium, and we marveled at how he used to feel like his lungs were filling with fluid, drowning him from the inside out. There were times when he knew what he was eating and took the risk, and other times when the sodium would catch him by surprise - only making itself known by the severe sickness and his overworking heart minutes after the meal. During those times I would watch him, knowing how hard it can be to be forced to give up eating your favorite foods, but also knowing your life depends on it.

I asked him last week, "You've fallen back into smoking before by simply being around it. Could that happen again?" Patrick has postured before, "Once an addict, always an addict." My question was valid but no less filled with concern and love.

He said, "HELL, no." Be it cigarettes or meth (his long-ago drug of choice), he hates them with every fiber of his being. There is no chance at all he would ever fall back into his old habits.

I told him almost 19 years ago, "I won't date a man who does drugs." He hasn't ingested, injected, or inhaled a single molecule of methamphetamine since.

Mic drop.

And as for my question about cigarettes that day, he knows what he has. Like a Facebook Marketplace listing for the priceless vintage car found under a drop cloth in an old, musty barn - no one would ever convince him to devalue the blessing Andrew and his family have given Patrick. "I know what I have."

"But Haley," you might be saying. "'Once an addict, always an addict?'"

Prior to the transplant Patrick's addictive personality shifted to chocolate. Whereas once he would pester the receptionists at the dentist office for candy, it changed to specifically chocolate. If he saw a random person eating a Hershey bar, he would pretend to reach for it and say, "Oh, thanks! That's so nice of you to share!" We had chocolate in the living room, the kitchen, the shop, his pockets, and a hefty supply in the pantry.

And if he by chance ran out and couldn't get his fix, he was actually grumpy. Grumpy over chocolate. It was like living with a PMSing teenager.

Once he got the transplant he kept up the habit of asking for chocolate while recovering in the hospital, only it wasn't long before he realized that that specific addiction had disappeared. He still liked chocolate but would often marvel to me how the need for it had faded. We wondered if perhaps Andrew wasn't a fan of chocolate? After all, I've spoken here about how Patrick will forever carry Andrew's very DNA inside his body. He is two people, and it can't be disproven that donor recipients take on characteristics of their donors.

I also wonder if Andrew was a gamer, because that is Patrick's new addiction of choice. It has been a tool for Patrick to use during the disappointing after effects of transplantation, and not an entirely unhealthy addiction.

And also, caramel toffee crunch ice cream. Never in 19 years have I known Patrick to crave such an odd flavor, and now he can’t seem to get enough of it. It’s so strange.

But our biggest struggle these days is the strange and confusing side effects of his medications when he doesn’t get adequate sleep. He still feels like he is wearing a suit of needles, and the sensation doesn’t go away until he gets another restful sleep. He has medication to help him sleep but often once he wakes up on it, his mind won’t quiet and he finds himself unable to fall back asleep.

The struggle for me in all this is having grace. I’m a wife, but still a mom, still a business owner, and still a guardian to our special needs daughter. I still manage her health, all the kids' school schedules, the home (barely), making all of my and their meals, and carrying the brunt of their physical and emotional health on my shoulders.

At the same time I am still a caregiver when Patrick needs it. I watch him, waiting for symptoms to pop up that he needs to record. I keep the kids away from him when they are under the weather, and take on extra duties when the four year old catches a cold to limit Patrick’s exposure to illness.

So where does grace come into play? When laundry isn’t done and Patrick complains because he’s grumpy with a low-grade fever and a headache, I struggle to not snap back that I have a lot on my plate. There are many more examples but I think that one says it all.

Chronic illness didn’t leave us when Patrick received the transplant. It just shifted - put on a different mask and now catches us off guard in new, different ways.

The good news is the transplant team has taken Patrick completely off Prednisone, the steroid that eats patient’s joints and gives them roid rage. Patrick has met transplant recipients who are still on Prednisone years after their transplants. He continues to be an anomaly.

This has been a rough season for us. Well, it has been a rough few years, going back to when his health declined and he needed his first ablation. The hits keep coming and we fall into darkness, rise above, only to be brought back down by something else. Our lives seem to run on multiple timelines - medical, relational, spiritual - and the timelines are like a line graph that’s all over the chart, with peaks and lows and sometimes indistinguishable squiggles. One can be high while another is low, or they can all be high or low. It just depends on the day.

I have had a lot of time since beginning this blog to contemplate the man. Who is Patrick? Over the last few days I have put on my Marriage Glasses to try to see how we have made it this far, how I am going to get through the next ten minutes, and what our lives might look like in the future.

He is not an easy person to live with, but then neither am I. He is complex and multifaceted, with layers upon layers that he isn’t always keen on revealing. He is private with personal stuff, loud and boisterous in public, and cares for the forgotten. He is often wildly inappropriate, seriously sarcastic, and so funny he has had me and others in tears with laughter.

Marriage to Patrick reminds me of the image of a garage poker game - the one played on an old folding table, with mismatching chairs, mismatching players. There’s laughter at the table, bawdy jokes, counseling sessions, and bargains to be made. There is also an eclectic pot - laundry tokens and bus passes; frayed dollar bills and a couple crisp $20’s; an I-O-U and tomorrow’s lunch money. There’s good and bad, stretched finances, and “There’s more where that came from.”

Patrick has thrown his offerings into the pot - his sarcasm and moodiness, his faith and his smile, a smattering of heart disease and a lifetime of doctor’s visits. He has thrown in four beautiful kids and an extended family I can only say I’m lucky to be a part of. He has thrown in loyalty and love, marriage vows and jokes, and probably a box or two of 20 gauge shells.

And I’ve won the hand. I encircle the pot with my arms and sweep it all towards me, triumphantly.

It has been left up to me to see it all as blessings, because everything we’ve gone through and everything we have endured together has made us the people we are today, and the couple we are today.

* Photo from our January 2006 wedding *

Happy 5-Month Anniversary!

Today marks 5 months since Patrick's transplant surgery, and the miraculous blessing given to us by Andrew's family and the transplant team at UW. Our gratitude knows no bounds.

Thank you, Jami, for this beautiful plaque! We will hang it in our house with love and pride.