As we got ready to leave, Monday Tank was confused. I think he wondered if we were going home or if Amanda was leaving us. As I packed the Yukon up, making a few trips, he got excited thinking he was going with us. Poor guy, I felt bad leaving him. This is the first time we’ve both been gone overnight since we moved into the apartment. Sybil is sure to spoil him while we are gone, that’s for sure! Our first stop on the way to Nashville was at Methodist, where we had a consult with Dr Guha. I misspoke, saying he was over the cardiothoracic department; he is the Medical Director of the Heart Transplant Program and Director of the Pulmonary Hypertension and Right Heart Failure Program.
We left a little early to go to Methodist. It may surprise you, but I don’t know all the hospitals in the Med Center! I did, however, know where to park; it was a couple of garages down from where I typically park, and was even connected to that garage. After I angrily drove around the weird garage, we found a scarce handicap parking spot. It was a little confusing when getting out of the new parking garage. Typical of the Med Center, the parking garage elevators will not get you to the floor you need; you have to go down, then get on another elevator. Sometimes, the level you get off of is a different number; the cancer center parking garage is level 3, and the building level is 2, so it’s confusing.
Once in the waiting room for the transplant center, we knew we weren’t at the smaller St. Luke’s we were used to. All organs use the same waiting room, and it was huge on the 26th floor of the building, with sweeping views of the entire Med Center. We went to one of the many check-in desks, but you weren’t supposed to go to the desk; instead, you were supposed to check in via a kiosk, which was very fancy! It wasn’t a long wait, but it felt like it because we had to wait in about four different locations. We had to wait after the kiosk check-in, then we were called to the check-in desk, then to admitting, where the lady told us we should have come at 6 a.m. to get labs, not to have to wait so long since it was first-come, first-served. I had to argue with her and tell her we would have to wait for three hours till our appointment anyway. Amanda just wheeled off and left to keep me from a continued argument. I didn’t even get to tell the lady that this is the transplant floor, labs are time sensitive, and telling people to come at 6 a.m. was bad advice. After that, we waited about 30 minutes to get labs, much less than getting there at 6 in the morning and waiting!
After labs, another wait for a vitals check. After the vitals, we moved to another location to wait for a room. Then we were called back to wait in the room for the doctor. It wasn’t the longest wait, but the most location changes for waiting we’ve had. The moving around may seem like it would break things up and make it feel shorter, but it doesn’t; it makes it feel much longer and is much more frustrating. While waiting on the room, our fourth of five waiting locations, an older man struck up a conversation even though I was busy on my phone, he wanted to talk! He commented about the waiting; I popped back and said we were used to it, just not all the moving around. He was full of questions once I responded. I felt by his inexperience with waiting, he was new to the hospital game; it’s more waiting than anything. I remember driving to Austin for a 2-3 hour wait for a 5-minute appointment, just to turn around and drive 4 hours back home. Those days broke us in on the hospital waiting game! I type as we are waiting right now! It is much easier with smartphones now, though, at least I haven’t gone through the only hunting magazine in the waiting room and transitioned to reading Vanity Fair or some other girly magazine. I was probably more in touch with my feminine side black then, though!
Once in the exam room, we didn’t wait too long after the pre-transplant coordinator left before the doctor came in. He was nice and spoke of how he had been over Amanda’s chart multiple times and talked with Dr. Nair about her case a lot as well. Not long into the conversation, he mentioned a need for a kidney. We had suspected this, but he was pretty sure, without seeing the lab work, that she would likely need a kidney as well. It is suspected that the diuretics have taken and will continue to take a toll on them. Another thing he mentioned was a DCD heart, or donation after cardiac death. DCD hearts are newer, and there aren’t long-term studies, but the current data is promising. A typical transplant comes from a brain-dead donor who stays on bypass until the procurement of the heart. With a DCD heart, the donor does not meet formal brain death criteria, and the family decides to allow for a natural death to occur. The doctor said it is up to us, but accepting a DCD heart is a no-brainer. This would shorten our list time. Another thing we must consider could be a Hepatitis C heart. We had decided before that we would defer to their better judgment if the doctors thought it was needed. The data says hep C is typically cleared up within six months after a transplant, anyway.
We both really liked the doctor. I think it was good that we were put on hold for the direct transfer because we were lined up to see another doctor, but now we are seeing his boss, the top dog for heart transplants at Methodist. He was very interested in Amanda’s case and history. He said he wanted to run some genetic testing to see why she may have all the issues she’s been through. Most are from chasing our tails, though, fixing one problem caused another, then another, and so on. He was concerned about the pericarditis that was fixed with a pericardium, the lining around the heart, window. He was thinking it was an autoimmune disease, but I explained that the issue was from epicardial, outside of the heart, pacemaker leads that caused that issue. He said he wanted to look for zebras when he heard hoof beats, not horses, right now, and think out of the box to see if something was missed.
He also mentioned that the stiffness of Amanda’s heart, restrictive cardiomyopathy, was the problem, which we knew. He said that it could get better. Once in an elevator ride with Dr. Nair, I questioned the restrictive cardiomyopathy and asked if it could improve. He said possibly, and they could do an MRI to see, but it was unlikely. The Methodist doctor is going to get that MRI to cover his basis. He asked if Amanda had gotten better with the “mab” treatments. We said no, actually worse, and he said it was unlikely to improve then. I was full of questions and rapid fired them at him. He would answer, then sit back and ask for more.
He seemed to think the wait wouldn’t be as long as we were expecting. Saying the most extended wait with super high antibodies they had was eleven months, he mentioned that he thought with a solid admission and a bump on the status list, maybe two months if we accepted a DCD heart. I questioned the original plan from Amanda’s first transplant, in and out of the hospital, to raise her on the list. He said they wouldn’t do that, and if he admitted her to increase her chances on the list, they would just keep her, whether that be a month or ten. Though that would stink, it would produce a heart quicker.
One last question I had was whether we would move forward with the evaluation or need to wait longer for the exact six-month mark. He said we could move forward now. He mentioned he had just gotten off the phone with Ajith, calling Dr. Nair by his first name when he came in, and he would call him right as he walked out the door. It is good that he has a close relationship with Dr. Nair, which could only benefit our case. The coordinator stayed to go over things and then said she was glad we advocated to see the doctor early. She could tell our case was complicated, and knew it was good that we had the meet and greet. We’ve learned through the years that you must advocate for yourself or have someone do it when you can’t. My advocating is just more intimidating than Amanda’s, or mean, as she would say!
We were on the road after that, a 5-hour drive ahead of us. It was early evening when we arrived at my aunt’s in northern Louisiana. We chatted with her for a while, catching up. It was right after my mother passed that I had seen her and my uncle earlier last year. My uncle came in later in the evening, covered in grease from working on his excavator. He reminds me of my father, being in his 70 doesn’t mean he won’t put in a hard days work! My aunt had gotten dinner, I think she forgot we were plant based, and had fried chicken and liver from a place we love. We had planned to cheat and get some anyway, so it worked out. All we had was chicken, though there were no sides. Our tummies didn’t know what to do without at least some veggies! It always feels like home going there. I stayed with them off and on over the summers when I was young. They have lived in the same house since they built it in the late 70s. She always had a ton of dogs, too; the current four are rookie numbers for her. I think the max has been in the double digits once. The recent addition is a 120-pound Great Dane who was glad have someone to roughhouse with and chase him around the yard, I had fun with him.
I was up early, way too early, at 3:45, and never went back to sleep. It was a bad day not to get much sleep with an 8-hour drive ahead. We took a detour to get some StarBs, I knew Amanda would approve! We skipped going north and first went east to Monroe to get coffee. I decided to keep it on interstates, and we went to Jackson for lunch before heading north toward Memphis to head east to Nashville. Sadly, despite being on the interstate, we left 75mph speed limits behind in Texas. I was on a long trip filled with multiple stops. I was done with the trip about halfway from our lunch stop in Jackson and our afternoon coffee stop at StarBs, in Memphis, burning up our large supply of reward stars. Amanda did good on the dirve and didnt even nap on me, but had pretty bad leg swelling. She’s about 20 pounds over her base weight. We suspect she will be admitted when we return home.
We rolled into the hotel right next to the Vanderbilt University football stadium; our room has a great view of the field. I get lounge access with my tier level, still riding on my higher status from my borrowout in Iowa. We planned to eat in the hotel lounge, but it was only chinchy appetizers. I hoped they’d have a big salad set up and some good entree items; we got spoiled by the Colorado Springs Marriott on our way home from our South Dakota trip last year. We opted for PF Changs, which was right next door, close enough for Amanda to slowly walk to. The hotel has an outrageous parking cost of $63 a day! The valet is the only option; there is a parking garage for a shopping center next door, but it’s not for hotel guests. There was another garage, but it was a 15-minute walk. I was going to drop Amanda and the luggage off and walk it, but they didn’t have a shuttle to get us to the hospital, so we needed the Yukon close for multiple trips. So we were stuck with the valet. I was worn out and crashed quickly after returning to the room from dinner.
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