Thursday, we had the remainder of the appointments for the transplant evaluation. The first two were teleconference appointments, but they couldn’t be done out of state; we had to be in the state of Tennessee for them. We were already there for the other visits, I’m not sure why these had to be via teleconference. The first was with the social worker, and I also had to be available for it. We had been told that with our distance away, our stay after transplant would be six months. Since being at Vanderbilt, the distance varied with each consult, hovering around the standard 6 weeks. The social worker said up to a year. I think they like to throw big numbers out to see how committed you are. I had a few questions lined up, the first was about the caregivers. I wanted to know if the requirement of two caregivers was always the case, or if it was flexible. It wasn’t a need for two constant caregivers, but only the need for a backup caregiver in case I was sick or something happened to me. The social worker wanted some extra people to be lined up besides me.
I also wanted to know how far away we could live after the immediate need to stay close right after, for the first few weeks. There is a possibility that I could get a Union Pacific management position in Little Rock. So, I wanted to know if we could split the difference and live halfway, a few hours, away. She said that would be fine, but at first we’d have to live less than an hour away. The next zoom consult was with psychiatry. I didn’t need to be there for that one and ran out to get coffee. Amanda had started the consult just as I got back. It didn’t take too long, but she had to finish via phone since the connection was lost during the video call. Everything went well, and he said she shouldn’t hear from them again unless she needed to talk about anything.
After the video consults, we went to have lunch with one of Amanda’s heart friends from Nashville. She and her husband were in the area and at Vanderbilt. She knew of a good spot that had plant based fare not far away. We hadn’t seen her since we met her for coffee in Nashville on your way home from our first heartiversary in the Smoky Mountains. Meeting her husband and chatting with them for a while was good. She has been battling her own issues for a while, and her husband is a doctor, so they both get things on a different level than most. Lunch was great, they still had a few errands to run, and we needed to get to the hospital ourselves, so our visit was cut short.
The first of our afternoon appointments was an X-ray in the actual hospital. The room number was 1145, but no floor was mentioned, so I just wheeled Amanda to the 11th floor. Well, I was wrong. 1145 was oddly on the first floor. I think they need to change the room number. We can’t be the only ones to have made that mistake! After the X-ray, it was labs with a total of 25 vials! Amanda mentioned that it was a record number for a blood draw. After labs, it was a quick and easy EKG. Followed by the final appointment, which turned out to be our longest.
We really liked the cardiologist. She started by getting her phone out and asking if she could use their new app to record our conversation, then AI would dictate the visit. That was a first for any office visit we’ve had. She wanted us to know their approach to pre and post-transplant care. They use a team approach to everything; no specific doctor sees you. She also mentioned that there wasn’t a method to see a particular doctor even if we wanted to. She examined Amanda and, after looking at her jugular, she seemed concerned. After a more thorough look, she said you need to be admitted right now to get the fluid off. Saying she would keep that in the back of her mind as she continued.
After discussing an admission, she said they would likely be able to admit her, get a higher listing status, and keep her until transplant. I had many questions, and I started with staying in Texas. She said that was a possibility, but it was up to the team to decide. But she kept coming back to the need for an admission, and her likelihood of not being able to stay out of the hospital, so she would need to be closely monitored. I also asked about the Daratumumab and what she thought of that course of treatment. They don’t use that medication, but she mentioned it wasn’t a bad choice, either.
Amanda asked about the antibodies and if they could be better in Tennessee. The cardiologist said their reach was so far in procuring organs that a location change may not even matter. Bringing up the antibodies, she said she wasn’t sure since Amanda had just had her labs drawn, the results wouldn’t be back yet. They had drawn antibody labs at St. Luke’s the week before, so Amanda got her phone out to check the MyChart to see if the antibodies were back. They were, and the doctor perused them on Amanda’s MyChart app. The class 2 antibodies were completely gone, and the class 1s were lower but not significantly. I asked about their antibody desensitization and if Amanda would need it. The doctor thought it wouldn’t be needed with Amanda’s current antibody levels and her shorter height.
I asked about a kidney next and if Amanda would need one. After asking about her creatine levels, she said she didn’t think that was needed. Also, there have been recent changes in getting kidneys after heart transplants. Something called a safety net transplant can be done if a kidney is required; this allows you to be immediately eligible for a kidney if one is necessary within the first 365 days after a heart transplant. They are finding that many kidney transplants aren’t required because once a new heart is thriving, so are the kidneys. When talking about the kidneys, she stressed that there’s no alcohol tolerance before transplant. She said this strict policy helps them see if any of their patients may need to have substance abuse issues dealt with before transplant. If a potential transplant candidate were to balk or ask, well, why not have a drink here or there, and didn’t seem to want to follow the no alcohol policy, they may need to sort out some other issue prior to transplant. At almost every consult, the no alcohol terms were brought up, I guess Amanda passed since she was telling us about why they ask so many times!
She then went back to an admission and said, “My offer still stands, we can admit you now, get you dried out and finish the evaluation here and keep you through to listing.” Amanda looked at me, and I said we hadn’t prepared for the transition to Tennessee yet. Amadna also said, “It’s my birthday tomorrow and I’d rather not!” The cardiologist said ok, but you must go to the hospital when you return to Texas. She also mentioned she wanted to know if anything with the admission didn’t go just as planned. If money were no object, we would have jumped at the quick way to listing at Vanderbilt. They are the best with heart transplants, and breaking the world record with 174 heart transplants last year, they seem to be the most experienced. Sadly, money is an issue and plays a huge role in our decision with Vanderbilt.
After the cardiology consultation, my head was spinning with the options on the table. It seemed that listing in Tennessee and staying in Texas was a chance, but it seemed further away now that the cardiologist wanted to admit and keep Amanda. I’d pressed the cardiologist on whether we could stay or if there was a chance of admitting and keeping her, but she wouldn’t shed light on that, only saying the team would decide. Either of those would be an option to list with Vanderbilt now, but we can’t move to Tennessee to wait just yet.
After our last appointment, we had a little time to take it easy. I had made reservations with Fleming’s, next door to the hotel, for an early birthday dinner for Amanda. With Amanda not feeling well, there wasn’t much we could do, so going out for a nice dinner was about it. Dinner was good, but nothing to write home about. We were both tired and chose to sleep in and not get up early for the drive to my aunts in North Louisiana. After a leisurely get-up, we hit the road after driving by the Parthenon, a full-scale replica in the park adjacent to our hotel. It was a long drive, but didn’t feel as long as the drive coming up.
We had planned to stay an extra day, but there was a chance I could go to work Sunday, and knowing Amanda would be admitted early in the week, we decided to go home the following morning. But first, we needed to see a few family members. My cousin, on my father’s side, whom I don’t recall ever meeting, was down from Northwest Arkansas for a few days in a nearby town. So after seeing some other family, we took off to see my cousin. We have been in touch over the past few years, and I met her brother when we were in Houston for Amanda’s yearly follow-up just before we took off to South Dakota. It was finally good to meet her and my aunt. We stayed a while, then hit the road back to our Houston home.
Sunday was a day off, we did nothing. Thankfully, I didn’t end up going to work. Amanda has a clinic appointment with Dr. Nair on Tuesday. We plan to have them admit her after that appointment. It seemed to work well last time when we could wait for a room back at the apartment. Amanda wanted to wait to be able to speak with Dr. Nair, too. If she got admitted early, it may be that we wouldn’t get to see him. We both really want to ask his opinion on Vanderbilt. Though I think we both know his answer, he has been the biggest advocate of our going there. I also wanted to ask him about dual listing with Methodist, if we could stay in Texas while listed with Vanderbilt.
I thought we didn’t need Nashville for anything but a backup. Now it seems that is the best choice, to be listed there, but stay in Texas. That is the best of both worlds. Still, though, I’m unsure what the best would be. The thought of an extended admission with Amanda in the hospital in Nashville doesn’t sound great either. Methodist has scheduled all their evaluation workup for mid-June, too. Vanderbilt is done with their evaluation, and the board will meet on Tuesday to review Amanda’s case. We will know more then, number one, if they approve, and likely if we can stay in Texas, if they need us to wait there, or if they want her to be admitted for the wait. We need prayer for that meeting and wisdom for ourselves to know what the best course of action is.
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