The fire I lit last night with my email was burning and doing its job this morning; the first doctor we saw this morning was Dr. Nair! He’s been working with Methodist here in Houston and got word today that they would consider Amanda’s case. He’s close with many of them and has been speaking with their director of the heart failure clinic. Her work-up packet was already sent there for consideration of relisting at their facility. The doctors from there would come here, but they prefer to do the work-up as an outpatient. So, we will go to Methodist as outpatient for their transplant workup, but they will likely use a lot of what has been done here.
The plan is to discharge us tomorrow or Saturday. We’ll follow Nair for post care with a new “mab” medication administered once a week for a month, then every other week for a month, then monthly for four months. We’re unclear of care after we are listed, but I would assume we’d need to be followed by Methodist for hospitalizations for UNOS listing status changes. We are just waiting for a call from Methodist to see when the initial consult will be.
All of the worry for out of state treatment was for nothing because everyone else was speaking out of their butt! Dr. Nair said he wished surgeons wouldn’t mention what was going on, but it was the in-patient coordinator whom we trusted more who seemed confident we’d go out of state. I wish he had talked to us first, but he wanted confirmation that they’d look at her case from Methodist before speaking with us. I’d have rather waited all this time for news on the listing than all the stress of thinking about an out-of-state center, though!
He mentioned how he and the pathologist seemed to think we could get a heart. The percentage that mattered for the antibodies was 77%. I’m not sure I understand that percentage, but he mentioned that if it were 98%, he’d have recommended sending us off. Also, a surgeon who previously did a valve replacement on Amanda and helped a little with the transplant testified that it wouldn’t be a problem to go back in Amanda’s chest a 5th time. Dr Nair mentioned that surgeon’s input would carry weight with the Methodist team. Ultimately, we think that with this hospital being a smaller center and with a complete revamping of the transplant center a few years ago, the medical board is worried about bad outcomes and doesn’t want to hurt their numbers. Essentially, it is playing hospital politics and worrying about the overall numbers versus the patients themselves. I still feel we will receive better care, and there is a reason behind this all.
I texted Brittany with an update after Dr. Nair left. She said, “Don’t be mad because I’m sure you already asked the questions… But is it a super star team at Methodist? Because we need the bestest for our girl. And now that we’ve already swallowed the out-of-state pill, we ain’t scared to travel.” That was my exact sentiment! While talking to him, I’d said, “Look, this wouldn’t be the first time we’ve sought care out of state. We used to go to Cleveland Clinic, so we can do it again to get the best care.” He was confident in Methodist and had a better relationship, mentioning that he had regular meetings with that team and would meet with one of them next week so that he could explain Amanda’s complicated case more. He said he thought going local was the best right now and would cast a broader net later if we needed it.
Toward the end of the conversation with Dr. Nair, the hospitalist listened in. She knew the plan first-hand and wanted to facilitate getting us home quickly once they approved the discharge. The transplant team followed not long after. The PA I’d sent the email to came in before everyone else. Her first question was if Dr. Nair came by. She said they told him “You better get your butt up to see them first” as she pointed violently toward the ceiling. The NP came in saying she’d sent him a message as well. The cardiologist agreed, and they were all happy he’d come by. It seemed I’d sicked a female posse on him this morning; no wonder he was up here first, and good thing he showed up before they did!
We were both in considerably better moods after the news. I don’t want to celebrate just yet; they will consider her case, not necessarily list her yet. Though this may seem easier, it opens up another can of worms! The apartment manager checked in yesterday; I’d put a move-in date of March first. I’d really like to get the apartment with all the visits for the new medication. It will be outpatient, so we will need a place since we can’t stay in the hospital. But something without a lease may be best until she’s listed. I’ll post my thoughts on that and fill you in on the discharge plan later today. I just wanted to share the news we’d been sitting on the edge of our seats about.