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 *