It has been nearly a month since Patrick came home. I have thought countless times about writing an update post, but every time it feels like something has been left unfinished, and, “If I only wait just one more day…”
But I now realize things won’t ever be finished. There will always be something drawing me away from the blog. There will always be unresolved issues, conflict, medication dilemas, and/or personal messes that will make it feel like tomorrow will be better; that in a couple days things will calm down.
This morning I transferred Patrick’s messed up, crossed out, wrinkled, highlighted, outdated medication list to a new spreadsheet. I organized it the same way the old one is but without the URLs clogging the top and bottom, and without the blank allergy list.
Truth be told, I am now more familiar with Patrick’s medications than I’ve been since the transplant. I would read the list our friend and caregiver Jim would send to me, but nothing ever sunk in. I couldn’t tell you what he takes for blood pressure, what he takes for rejection, what dose of Aspirin he’s on, or why he takes Tums regularly.
Now I know. This task has unexpectedly made me feel more in control, and most importantly, more involved.
Things came to a head this week with issues we have been dealing with, and they culminated in a phone call yesterday morning from Patrick’s third (or fourth…?) new transplant coordinator. And in her words, “There are too many cooks in the kitchen.” She was unaware of an aspect about Patrick’s medication interactions that, once brought to light, put on hold her current instructions for him.
This last week Patrick had a couple medication changes that resulted in discouraging numbers when paired with a decrease in the quality of his diet.
That’s code for he ate too much salt and junk food.
Mind you, he continues to eat a lot of vegetables, egg whites, and healthy foods. But there were a couple instances where we went to a barbeque, or he nibbled on our foods at the fair. And just last night we had an impromptu taco night that was enough to send his weight up three pounds this morning.
His blood pressures have been disturbingly high, and his weight gain came just after hearing from his previous transplant coordinator that any unexpected number changes needed to be immediately followed by a call to his care team.
By the way, the second call from his new coordinator after she consulted with a doctor on his care team yielded more medication changes.
Now, what I am about to tell you 1) might not come as a surprise knowing who Patrick is as a person, and 2) isn’t being said so any of you can come down on him about his choices. I WILL hear about it.
With that being said, he had put off calling for a few days. About eight, to be exact. I was not happy about this. I am finding lately that my worries surrounding his medical conditions are multifaceted and often catch me off guard. This is new territory.
I worry he is doing too much. I worry that any activity other than sitting and doing nothing, or anything more than light exercise, will set his new heart up for failure down the road. I think about it like a broken bone - if it’s not set properly it can cause issues for life. And we can’t know if on a cellular or molecular level his heart is being properly knit into Patrick’s tissues. It is, after all, an organ with Andrew’s DNA being blended with Patrick’s. I feel that during this first year post-transplant it needs to be given the biggest possible chance of blending correctly and thoroughly, and that won’t happen to the fullest extent if Patrick doesn’t give it a chance.
Of course, that is all my opinion. I have had very little personal interaction and discussions with doctors in the last four months; in fact, none since the two weeks after the transplant when I was visiting with Patrick in the hospital.
I want thirty more years with him. I don’t want to find out in one or two or five years that his new heart is going into rejection.
The world needs Patrick for thirty more years.
Those first few days when he got home were Rough with a capital R. After being away for six months he had trouble remembering where things were, or what routines we had prior to his departure. Then he had trouble assimilating into the routines we had created while he was away.
During those six months we spoke for countless hours on the phone. We spoke about big plans for our future, small plans for our family, changes we wanted to make, places we wanted to go, and how we could move forward as a family during the big emotional and physical changes Patrick was going through. We also spoke about how the kids and I weren’t going through the same emotional and physical changes, and what that difference in our paths were going to look like once he arrived home.
Then, when he did get home all six of us had to contend with which of those plans happened, which didn’t, what changes happened easily, and which ones didn’t. Those changes included ones Patrick promised to make and that I banked on happening. I had quite a few desperate moments of feeling like he was incredibly annoyed with me, and feeling awful about it.
I believe he quickly realized the path we were on wasn’t one that was going to benefit anyone. He remembered the things we had spoken about, and made a concerted effort to remember the promises he had made and to calm down.
In the last four weeks we have made strides in our family dynamics. Our marriage is strong, even though we have conflicts daily. But that’s more because I’m a messy, emotional packrat, and he’s a controlling clean freak (said affectionately). It is what it is. That wonderful blend of opposite characteristics is what will keep us on our toes for the next thirty years. He’ll help me keep a clean house and I’ll help him understand the emotions our daughters experience.
We had to cancel our plans for a road trip to Valdez this weekend based on Patrick’s whacky numbers and the possibility that his care team would want him to do labs in the next few days based on the medication changes they order.
At this point that feels like it will happen at times. Our lives today look completely different than they did seven months ago.
Overall Patrick is doing well. He has another biopsy scheduled for this month so we’ll be arranging his travel soon. We also don’t know what those visits will look like - how long he’ll be there, where he will be staying, what he will be able to do while he’s there, etc.
There haven’t been any major developments in the last month. He’s back to his usual antics, messing with customers and annoying his family. He’s looking for volunteer opportunities to help the elderly, and enjoying life and his new-to-him body and heart.
I’ll update again after his next biopsy with the results!