A Devastating Blow

I’m just going to jump right to it on this one and cut right to the chase. I don’t know how much I have in me today. The medical board met and decided it was too risky to do the transplant here. The deciding factor was the combination of the high antibodies, the previous infections of the sternum, and what would be the 5th opening of her chest. The inpatient coordinator was the one who dropped the bomb; she’d thought Dr. Nair had already come to given us the news. As I type this, he still hasn’t come by yet. There has been talk of a few other centers. Supposedly, he’d called Methodist next door yesterday, but the coordinator didn’t put much weight into that or any other centers in Texas. The alternatives mentioned were Cedars Sinai in Los Angles, Vanderbilt in Nashville, and Mayo in Minnesota. I also remember him saying one in New York a while back.

Amanda anxiously waited for the new all morning and early afternoon, getting angry the longer we waited. I was fairly confident they would approve because the only word we’d received otherwise was from the surgeon yesterday. Sadly, I was grossly mistaken. I felt blindsided by this; the wind was knocked out of me, and I was sick to my stomach.

This was a lot to take in and the most brutal blow we’ve been hit with to date. We will not only have to start over with another center but live there while listed, after the surgery, and do all follow-ups there. We also have to get through the pre-listing process to be approved again. I had hopes I may be able to get a job in management in LA or Minneapolis if the choice was either of those, but the usual plethora of management jobs are not available now with the new leadership of the company. So looks like that is not an option.

At the end of the day, some center will accept Amanda’s case. We will receive better care with better doctors with more experience in high antibodies and riskier surgeries. I’ll figure out the rest. There was mention of some antibody treatment they can do right before transplant that helps, but they do not offer that here. I know there is a reason for all of this, but that doesn’t make it better right now. Who knows, this decision may have saved Amanda’s life from something this hospital or team would have been in over their heads on with her case.

This won’t be the first time we’ve traveled for care. We used to go back and forth to Cleveland for years. We now have a more extensive support system and are better off in many ways than then. I was furloughed from the railroad for a period during our travels to Cleveland; if we made that work, we can make it work this time. We’ll likely receive a heart quicker at another center as well.

Amanda took this rough, as you’d expect. She was a wreck at first; the coordinator didn’t know what to say, so she just hugged her before she left. She’s not been doing well since. As she calmed down, I tried reassuring her we’d make it through this. She said I’m not worried, just overwhelmed. I feel we are more lost now; we just don’t know which way to go. Literally, we need to know which way to go. I need to plan, not because that’s how I’m wired, but because we need to know where we are going so we can plan the trip and what lies ahead. I don’t know if we will be leaving straight from here or going home for a spell first. 

I have been running through scenarios in my head since we’ve gotten the news. I checked that our insurance covers all three centers mentioned. I also checked hotel rates around each center. Cedars is almost in Beverly Hills, so it will be cost-prohibitive to go there. Mayo would be the top choice care and cost-wise, but I wonder about the low population center of the Midwest in terms of getting a heart. Vanderbilt set a record in 2024 for the most number of heart transplants worldwide, so they are on fire; Nashville is also reasonable. I don’t know how much of a choice we have in this; it’s going to matter what is lined up by Dr. Nair. 

It has been excruciating waiting for him to come by to fill us in on things. By now, I don’t think we’ll see him either. I knew Amanda could use some emotional support fries in the afternoon, but I wasn’t about to leave the floor in case Dr. Nair came by. I asked Amanda what she wanted for dinner, and I got a pitiful “Something bad for me” from her. So, I ordered something bad for us from Uber Eats and told the driver I would give them an extra $10 tip if he brought it to the room so I didn’t have to leave. Thankfully, he came through, yet the doctor never showed. I’m hoping it’s because he’s trying his best to have things lined up before he talks to us.

My mind is tired from thinking today, so this is all you will get from me. I’ll go over my thoughts tomorrow when we know more. Those I’ve spoken with over the phone and via text about this have all asked what they could do. I will be asking for help with a few things and have a plan for how we can go about this. It’s time I call in favors and say yes to those who have offered help, but we need to regroup and prioritize our needs; they are different now. As I mentioned yesterday, it’s not like I haven’t had a plan in the back of my head for this scenario. It’s time to make it real now. 

I have my class tomorrow here in Houston. I will leave late tonight to miss the morning traffic (it’s over an hours’ drive away with traffic) and the weather. I’ll stay in the hotel tonight where my class is, against my better judgment, but Amanda doesn’t want me out driving in rush hour tomorrow when I don’t have to. After such devastating news, I would typically take off work, but this is too easy money to pass up, and working this class will give me the exact days I need to secure my all-important health insurance through the end of March. So it’s a no-brainer; I have to go. We may be flying out of here before even going home, so it’s crucial I get the insurance secured without wasting vacation time before we may have to leave. At this point, we just don’t know. We could use the most fervent prayers for guidance through these deep waters. We need them now more than ever.