Bearer of Bad News

Dr Nair came by in the evening; I was watching my phone for our dinner to be delivered when he walked in. He seems to be the bearer of bad news nowadays. He doesn’t round on the floor much anymore and stays in the ICU. That is why he has wanted to put us there so often. He mentioned before that his urge to have her in the ICU was more selfish, just to have an eye on her more. By all means, keep us there, I wanted to say; we like it there much better than the floor. If the beds were readily available, I think we’d be there. He mentioned that the rejection came back low, and the antibodies returned negative.  That may sound good, but we must go with the symptoms now. Amanda has had slight improvement, only getting worse since the initial admission. The antibody level may be low because of the Soliris, and he wanted to check with the pharmacist if the level could be false because of those infusions. 

The plan is to keep her in the hospital until her symptoms improve. Amanda asked what we would do since she barely improves with the high Bumex. He said it is just going to be day by day. There was mention of a balloon pump, a balloon put in the heart to help it pump better and get the fluid off, but that is a bit drastic. She had one of those for a couple of days after the transplant. If that were the case, she would be bed-bound if they were placed one. I don’t think we’re there yet; the rounding doctor (the stomp out of the room one) is just mad that nothing is working. You and me both, buddy!

I think the news Dr. Nair came to deliver is that the official decision is to list Amanda again for a new heart. We knew that was coming, and after his last visit, we could see the writing on the wall. They did the antibody percentage test for the transplant that came back. It wasn’t super high, so thank God we won’t need to be sent off to another transplant center out of state. The pathologist thought that they would be able to obtain a heart here. That being said, it will be more challenging to get one since she can’t have a heart with any of the antibodies she has issues with.

This wasn’t a gut punch as before, and we expected this much now. I was relieved we wouldn’t need to seek treatment out of state. When the doctor left, I noticed our food was almost ready, so I hurried to catch the elevator. I waited and rode down with Dr. Nair; he was sorrowful about our situation, saying this is just the case with younger women sometimes. I asked about the rate, and he noted the stiffness of the heart likely had something to do with that. Then I asked if the restrictive cardiomyopathy was reversible. They could do an MRI, but it was unlikely it could be improved he said. The damage done by the antibodies was here to stay.

The new night nurse, one we’d not had yet, made a quick trip to introduce herself. When she left, she noticed my new lock for the door when she tried to shut the door and it didn’t budge. This room is different, and I had to loop the gait belt through the cabinet handles to keep it open. Everyone has the natural reaction to shut a door; we only like it closed at night. We all laughed when she saw my setup! We had Chinese food again from a place we have ordered from frequently. Another nurse came in talking about how good it smelled and where we got it from because they wanted to order some!

Amanda hadn’t walked the halls at all while I was gone, so we were going to go for a stroll. Her hair had dried naturally and was curly. I like it this way, but she commented that it was frizzy since she didn’t blow dry and comb it out. I told her she had the best hair in all of 25 tower, so don’t worry about it!  When we started walking, she came out of the door like a horse at the race track when the gates open. I think she was glad to get out. It reminded me of a tee shirt I once had when I was younger; it had a donkey in the bed of a truck and just said “Haulin” above it! I thought she was doing excellent as fast as she was walking. The jolt out of the gate was a bad idea; she slowed quickly and had to stop. We walked a bit more, then she stopped again. I called for a chair from an assistant, and she got the nurse.

Amanda couldn’t walk back to the room, so the nurse looked for a wheelchair, but none was to be found. So I pushed her in the office chair, which was much more complicated than you’d think, and the nurse pulled the IV pole. I pushed the chair, which was going every which way, with Amanda sideways sometimes! After we were back, Amanda was in pain and needed some meds. She was crying, and I asked her if they were hurt or emotional tears. She said, scared tears. She thought she was going to pass out, trying not to, and was frightened. She got nauseous afterward, too. She was still in pain a while after the IV pain meds and she needed the oral one quickly after.

I was getting ready for bed, and she wanted some ginger ale. With some of her refresher left, I said I thought it would be good if I mixed them. In a pitiful voice, she said, “Make me a cocktail!” I fixed her one and then made my bed. We had smuggled the air mattress topper and pump out a few stays ago. I’m pretty sure it was ours. I wouldn’t think they reuse them, but I didn’t confirm. Got the recliner and chair for my extra length all lined up, then put my new air topper over top for my sleeping setup. It turned out well, but getting in was quite precarious when the sheet popped off the top and hit me in the head when the recliner back sat up straight as I laid down!