Our short two-day, three-night stay in Nashville is packed with busy days at the hospital for consults from everyone, from nutrition to the surgeon, and everything in between. Wednesday, heading to the first appointment, we didn’t know the area. It is a large campus that is part of the university. A bigger footprint than a Texas Medical Center Hospital, but not anywhere as tall. Houston is full of medical skyscrapers, but not so much here. Also, parking is free at the this hospital, which helps offset the crazy hotel valet-only parking cost. We started with a nutrition consult first, which went well. Hey, we’re whole food plant-based, so we weren’t worried. There isn’t much healthier than that, and most doctors accept that it is the best for health, especially for heart health. We aren’t vegan, though it is often confused with what we do. Veganism is an ethical choice; we are plant-based for health reasons, but occasionally eat meat and dairy. So the nutritionist asked about whey protein-based meals through a feeding tube, if that was okay, if a tube was needed, which we were fine with. Amanda was worried about sass from being plant-based, but we received none. The nutritionist said they had another nutritionist who was very patient and devoted to the plant-based lifestyle and a huge advocate of it, her name was even Amanda!
The next appointment was with an infectious disease doctor. He was very thorough with his questions, going over Amanda’s history. They have been calling Amanda and told her they would call every week about the vaccinations she needed until she got them completed. Amanda told them she was taking a chemotherapy-style drug, and it was probably not a good idea to have anything like that with her lowered immune system. The doctor reviewed the needed vaccines, and once they run labs, they can see what she would be immune to from other vaccines. We left with a prescription for tetanus and shingles. Even though Amanda is under 50, one day closer with a birthday tomorrow, she still needs the shingles with her lowered immune system. The ID doc mentioned that, with Tennessee and Texas being red states, they can’t decide not to list her based on a refusal to get a vaccine. Red state but liberal university! Either way, Amanda will get the vaccines. The minute they said it would protect her last go round, I got my first-ever flu vaccine. The doctor confirmed that the method of action of the Daratumumab should not affect her body’s ability to build antibodies for either vaccine, too.
After those appointments, it was time for lunch. Amanda, being Amanda, was indecisive about what she wanted. She mentioned poke, and I thought sushi, but it turned out she wanted neither! I found a Jewish kosher vegetarian place close by; it turns out there is a section of kosher places here on campus. We were excited to eat there but waited in the parking lot looking at the menu till 11:30 when they started serving lunch. We went in to find out they closed at the end of the semester for the summer. The security guard recommended a food truck, but I had already found it and noticed it was also closed early in May. Amanda was then in the mood for a sandwich and craving a bagel, so we found a local bagel joint at an adjacent university. I must have lapped that place looking for a parking spot 5 times before I just dropped Amanda off, and said I’d hoof it in. I couldn’t find parking within a mile, so she grabbed it to go, and we went back to the hotel. We now know why the parking is so expensive at the hotel: it’s so limited around here! The sandwiches were great and we scarfed them down.
After lunch, it was a consultation with the surgeon, one of the five heart transplant surgeons. This particular surgeon interned with Amanda’s transplant surgeon at the Cleveland Clinic. He was also mentored by the surgeon who did Amanda’s 2nd open heart done at the Cleveland Clinic; small world! He was very thorough going over things, and we covered a lot. He was worried about the innominate vein being too close to the chest wall. It can cause some surgical issues if it is too close. Dr. Nair had mentioned how one of the surgeons, who did Amanda’s first valve and was scrubbed in on the transplant to help, testified at the medical board meeting when her case was presented that it shouldn’t be an issue to go back in for a 4th open chest procedure. I made sure the Vanderbilt surgeon knew this. He wanted to get the op report from the transplant to make sure of the new upper chest anatomy, also to see how much reconstruction they may have to do. He went over different approaches to bypass one was to stay away from the superior vena cava, which Amadna had bypassed in her first open heart, and was replaced entirely during the transplant. We also discussed the issues with sternal wires and the subsequent infection after the second removal. He went over different approaches to closure and some options other than wires.
Along with the op notes, he wanted a CT of the chest. With us being so far away, he wanted to know how we’d handle the move. I spoke briefly about how we planned to sell our home and liquidate the equity to fund such an undertaking. I think he just wanted to say we have had a plan or the money. He also mentioned that with a DCD heart, a wait with them would likely be shorter, too. They have a farther reach than most with a procurement team that travels a good distance to get an organ. He also said it was out of his purview, but their antibody desensitization was second to none. We both liked him and felt good about the consult.
One wrench in the pot was the thought of being listed and us staying in Texas. I had asked a question about how far we could live, speaking of after transplant, and he said they have patients who come from as far as New York, and the time from hearing of an organ to transplant was a good bit. I thought I misunderstood him and didn’t clarify since he had misunderstood my question anyway. Amanda heard the same: we could live in Texas while on the list in Nashville. That was never even a thought; we have a medical transport insurance to fly us home in the event of any emergency, and a transplant would fall in that category. My mind was spinning after that. Staying in Texas and being listed with Vanderbilt is the best of both worlds. We could stay in Houston, I could work, and our local team could follow Amanda. Then, when the call came in, we hop on the medical transport plane and go to Nashville. Meanwhile, once I secured an apartment in Nashville, someone could pack up the apartment and move our things there. Or, health permitting, when our out lease is up, we’ll pack up a pod to store our apartment stuff till transplant, and we move back home to wait. We could skip Methodist altogether or maybe dual list. I was playing out all the scenarios and wearing Amadna out with them! We came up here with only the intention of Vanderbilt being a backup, but now it could be the top choice.
After that, consult and our minds running rampant, Amanda had to do the dreaded stress test. When she told them about her activity intolerance, they changed it to a bike versus a treadmill test. She was worried about it too, and made it about 8 minutes before she had to beg our; they pushed her pretty hard too. We made the long trek back to the parking garage when she was finally done. When we went to the garage, we caught up to a couple waiting in the same area. The wife quipped to her husband that he should have given her a “ride” back to their car, too. This may seem harmless, but it is common with someone in a wheelchair. I held back a “no, I think you’d rather be able to walk if you were in her shoes!” It’s amazing the remarks people will make when we’re with Kim, who’s in a wheelchair, and Nathan. I don’t think most mean anything by it, but if you are thinking of making a remake about someone in a wheelchair, unless it’s a personal compliment, just keep the “hot wheels” or “wish I could take a load off” comments to yourself!
Once back at the hotel, Amanda felt pretty rough, the worst I’ve seen her in a while. The stress test stressed her body. We had planned to order delivery or room service. Amanda had seen the best vegetarian cuisine in Nashville was at an Indian place, so I jumped at the chance to eat that. I ordered an array of options and we sprawled everything out on the sofa and dove in! We promptly got in bed and crashed early after dinner, with a loaded day of appointments lined up staring in the morning.
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