Hard Pill to Swallow

I was up early to ensure I would be there when Dr. Nair came by. It was rush hour, so Tank and I had to brave the traffic. There is nice wide St Augustine grass strips that is good for pooping, but it is right next to Main Street. And, of course, Tank likes to dodo (that was a typo, but it fits, so I’ll just leave it) his business right next to the street. I knew a dog was approaching from behind us, and I could tell by Tank’s ears and face. There was a lady with a small yippee dog who seemed not to care to make a wide berth when passing us. Tank could have dispatched that dog in one bite! Unlike our annoying little passerby, he was a good boy and didn’t even pull on my leash. He is the biggest softy ever, but when we stand at the lights, he likes to stand facing the opposite direction, which is very intimidating to those walking by. It looks like he’s got my back, even if he would allow me to fall to my demise by anyone that said boo!

When I walked into Amanda’s room, I saw an IV poll with a drip going. It was Bumex, the diuretic she’d been on, but a continuous drip. The fellow started it after I left, and I assume he talked to the big boy doctor. The hospitalist came by and put the ICU order in, so it seemed things were moving along. She asked Amanda if she was relisted. Those are scary words to us. I guess her condition is as bad to them as it seems to us.

I wish the scariest it got today was just a doctor, who didn’t know much, mentioning relisting, but it wasn’t. Dr Nair came by and went over things. I questioned the fluid and whether the rate was causing that or the rejection. News to us, but the rate causing that seemed to be a thing of the past. He said it was all the rejection’s fault. Saying this wasn’t good and mentioned the dreaded words “another transplant.” Even though we knew this was a possibility in the back of our minds, that didn’t soften the blow of that gut punch.

They still need to do a biopsy, which will be tomorrow. We really won’t know the course of action until the heart cath is performed and the biopsy results are back. There seems to be no standardized care for antibody mediated rejection. He mentioned some things they were trying on the other patients and what the Children’s hospital was having luck with. He then went over some new medications that he may use, but they all seemed to fade into the background of my spinning mind. I tried asking pointed questions about the difference between the medications and Soliris, but I could barely focus on his answers.

As a precaution, they will begin the workup to be relisted for another transplant. This is common, he said and will run in conjunction with the new course of treatment. I asked about the antibodies and the chance of getting a new heart if we ended up on that road. We knew the more antibodies, the more complex a match can be. He explained that in-depth and went down a rabbit hole of the percentage of antibodies and how they plug the numbers into a calculator to format the percentage. He then said if it was high, they couldn’t do the transplant, and we’d need another center. There are only three in the states that specialize in high antibody transplants. I like to plan for the future, but I kind of wish I hadn’t asked that question. That is far down the line and may not even be something we have to worry about, so there is no need to fret about that now. We have the more pressing issue of the new course of treatment and focusing on that.

I’m a forward thinker; my mind is always in the future. Whether it’s our next trip, our next remodel, or our next procedure. So, as I processed all of the hard pill, I was thinking about things and how this would progress if Amanda were going to need a new heart. I know for a fact God will see us through, but that does come with a bit of anxiety. He saw us through last time, and he’ll do it again. My mind still wondered since there is so much involved with this. Even after all of the medical stuff is out of the way, the logistics of another transplant, the wait, the care, the back and forth to appointments, my job, the expenses we’ll have to deal with, and so on. God had already provided for us at the beginning of this rejection in ways only He could have orchestrated. Long before we even knew the gravity of these treatments, before we even knew we’d be in the hospital for so long, we were taken care of. I find comfort in that.

I sat, leaned back in my hospital chair, not a good one, staring at the wall, thinking. I don’t typically have a happy-go-lucky face, no matter my mood. I have the man version of RBF! The nurse, who was in the room when we got the news, was worried about me in my deep thoughts. She was trying to cheer Amanda up and gave her a fist bump. Still watching me, she pointed from her eyes to me. She said don’t make me start an IV on you. Amanda chimed in and said, “The ICU nurse said she’d give him an enema if I didn’t straighten up!” On that note, I let myself out so I could go let Tank out!

At this point, I don’t even know how to pray or what to pray for. Do we want the treatments to work and be in a constant battle against the antibodies with ongoing treatments? Do we pray for a new heart? I don’t know the answer, but Jesus does and will intercede for us. As I type this, Hard Fought Hallelujah plays in the background. Some of the lyrics are: “Cause faith isn’t proven like gold ‘Til it’s been through the fire, My head, heart, and hands are feeling heavy, But that’s when I lift them just a little higher.” Our faith has been through the fire, and that’s for sure. Our heads, hearts, and hands are so heavy right now. So, we’ll lift them a little higher along with a hard fought hallelujah.