From One Extreme to the Other

When I heard Amanda talking to someone on the phone and saying that the last two days have been from one extreme to the other, I was like that’s today’s title. Today alone has been a whirlwind. I already had the title of Square One typed out in my notes, but had to change that. Buckle up, today has been a ride. First, let’s start from the top. Last night we had a late dinner, not eating till 10:15 or so, since Amanda’s bedrest was up at 10. We typically don’t go to bed till midnight, but it was an eat and get in bed kind of night. The last two nights, the light in the hall have been on and off, bright then dim. There are full glass doors with glass side lights to the room, much like TV shows or your typical newer ICU room. So, with only a curtain for privacy, the light was annoying. Turns out they are waxing the floors, banging into the wall and doors at night, no less.

The team came by and said the cath was good and the pressure looked great.   Some of the biopsy findings were back, but not all of them. The PET scan didn’t show anything to prove the chest pain, but it showed some residual issues on the sternum, which was to be expected from all the surgeries and wire removal. Nothing definitive about the pain, a mystery. The unexplainable seems to be a realm we live in with a lot of Amanda’s health. I think this cardiologist and the one at Methodist are too worried about the why. We are long past the why; we need to address the issue here and now. We didn’t come thousand miles for the why, we came for a damn fix! He again said he just doesn’t know what to do.

Then he went into discharging, and was talking about not listing at all. He spoke of how her fluid retention leveled, and she’d be fine at home. There was a slight spasm in her heart during the cath, and they wanted to start her on a new medication that might help with the angina. The worry I had yesterday seemed to be coming true. They had a meeting at noon to go over the transplant cases, and they would hash it out then, but he again said that he didn’t want her to leave the hospital worse than when she came in. He spoke about the quality of life. Amanda popped in and said that she loves what she does for work and just can’t do it, and how we love to travel, hike, and go and do, hinting that she doesn’t have much quality of life. She mentioned months ago how she feels worse now than she did pre-transplant for the first one. Mind you, she was on oxygen 24/7 then and could barely get around. It felt like we were back to square one, devastating.

I asked him, So we were approved there weeks ago; what’s different now? He said that in trying to figure out the pain, they ran all the tests. They found out a lot, but still did not end up without answers. Again the why, it seemed chasing the why screwed us on getting a new heart here. He was just perplexed by everything. He still went back to how she’s been dry for a few days. Here’s the deal, I just can’t get through his head, two rams butting heads! I understand that Amanda’s symptoms don’t line up with the pharmacology of why her kidneys go up and how the dopamine shouldn’t work. He still hadn’t figured out that in all the I don’t knows of Amanda’s health stuff, nothing lines up like it does in the textbooks!

He thought she was dry. Amanda still feels a little fluid in her belly. They got her “dry”, according to him, still 10 pounds above the last time they dried her out. He was basing a lot of that on her kidney levels going up, but they double-dose her on the medicine that has tanked her kidneys every single time they double-dose her! Then she was NPO, not drinking anything till 3 pm on that day, and then the next day she didn’t have anything till 10 pm. She didn’t drink hardly anything and still gained a pound each day. And he’s saying she is holding well and not retaining any fluid. It was kind of a, excuse my French, no shit Sherlock moment! Of course, she didn’t drink anything to retain. The proof is in the pudding, and they will soon see. She was on IV Bumex 3 times a day, along with two other diuretics, and from our last discharge to this admission, a one-week period, she gained nearly 20 pounds. The only thing that has changed is the geography, I don’t think that could account for her all of a sudden becoming “euvolimic,” regular fluid levels.

Amanda mentioned the high heart rate, the first sign of the rejection, which was at about 133 when she mentioned it. He then began to wonder and try to find other reasoning. You could tell he just didn’t know. What was a common-sense correlation to the rejection wasn’t so much for the MD. The PA mentioned something it could be, and the doctor said maybe it’s flutter and called for an EKG. We discussed the EP study and the ablation Amanda had at the beginning of the rejection. I’m fairly certain that if it were something like flutter, the electrophysiologist would have detected it when they were chasing the crazy rate all the way to her sinus node. After all of this, my mind was numb. How did we go from coming here with approval to this? How did we go from you being approved and too sick to stay out of the hospital, to we can’t figure it out, we’re going to send you home? Amanda was talking with someone today and said they were trying to fix the puzzle and make all the pieces fit, but the puzzle is a wreck!

He was adamant that Amanda walk and do cardiac rehab. They came to get us for that, not long after. We barely had any time to even process what had just happened. We also had a heart friend and her husband from Chicago on the way to see us. They had been in North Carolina and wanted to stop to see us. The rehab went better than I thought. With most of the fluid off, she is feeling better and able to do a little more, and not taking that much pain medication either. She walked to the rehab lab, which was on the other side of the floor. Slowly but surely, she made it. After a brief rest, they only had her ride the recumbent bike for five minutes. Not as long as I had thought. While I waited, I sent out a text to our core prayer warriors about our current situation of no longer listing, and that the entire transplant team would be having a meeting later today, so we need prayer. 

After we were back in our room, we hashed things out about what had just happened when the team came by. The talk of discharge without a listing was hard to hear. Our friends arrived not too long after we returned from rehab, too. Amanda had met this heart friend in a pacemaker group years ago. We have heart friends all over the states. We’ve met a few in our travels, and would love more. They were a welcome distraction from the news we had just received. Yet the back of my mind was spinning. I thought, are we going back to Texas? If so, where are we going to go? We had friends literally on their way to the apartment to move our stuff out. 

After talking for a while with our friends, I got a call, and I stepped out for it. It was our friends who were moving our apartment. They had gotten there and had just read my prayer request text. I knew what their next question was going to be: Do we still move everything? In my whirlwind of thinking, I had already decided that if we were discharged without a plan to retransplant, it would be a ville either Nashville or Brackettville. There was no sense in not packing it up while they were there; I didn’t want to be stuck with that apartment any longer.

I was going over the bad news with them, pacing the halls back and forth. When I am anxious and on the phone, I pace and talk. I had made my way to the waiting area at the end of the hall. I saw Rhonda, our Chicago heart friend, coming towards me. She said the doctor was back, so I took off for the room. I’d asked him to come by after the meeting; I didn’t want us to be left hanging. Poor Rhonda, I was long striding and left her in the dust. When I walked in, Amanda said Casey, the coordinator, called and asked if it was ok to push the button to list. The what I said, the button? Your listed? The minute I walked out, the coordinator called to say that after the meeting, they were ready to list. Her cursor was hovering over the button. All she needed was for Amanda to say yes. As soon as Amanda said, “Let’s do it!”, she’d click the button. She’s LISTED!!!

Talk about a roller coaster of emotion today! What a whirlwind for sure! The doctor followed up not long after to review the details. He said their meeting was an hour for all Vanderbilt heart transplant patients, and they spent 30 minutes talking about Amanda. It seemed he was in the minority of those who thought she didn’t need a transplant. Some of our prayer warriors had gotten together and prayed hard. It seemed the Lord heard the cries. Sorrow may last a night, but joy comes in the morning, the Psalmist says. Looked like our morning came early! 

There’s a lot more that happened today. We still have a little to figure out. I still need to butt heads with the cardiologist a bit, but I’ll cover that in another post. I wanted to end this one on a high note. I need a break after today, I’m mentally and emotionally exhausted after a tearful day, sad, joyful, and even tears of laughter. So I will end this with a bit of levity on where the tears of laughter came from. The cardiologist’s name is Menachem. I can not for the life of me remember his name, I just had to look it up off his card now. While searching for his name today, I looked at Amanda and said Dr. McChicken! We got some good belly laughs out of that. I come up with pseudonyms for all the hard-named doctors. We hit a few of the top ones with our laughter. An interventional cardiologist from the Cleveland Clinic was Dr. Shishehbor, aka Dr. Shish Kabob. A more recent addition from St. Luke’s, the cardiologist who moonlights at Methodist, Dr. Bandeali, aka Dr. Bendy Over. Good night, friends, it’s been a hell of a day!