A Mystery 

Friday night, I left the ER late; there was no sign of us getting a room on the transplant floor anytime soon, either. The drive was all too familiar, and I was on autopilot heading back. No telling how many times I made the run back late once we were in step-down after Amanda’s heart transplant. I can’t go by our church like we usually go home because the Ag center we drive through is closed late at night. Surprisingly, I remembered that! When I got home, Tank was confused and kept looking for Amanda to be coming in after me. He was ready to get into bed and kept getting in and out as I was getting ready for bed. He must have known something was going on and slept glued to me, which he typically doesn’t do.

Amanda wasn’t sure if she wanted coffee the night before, so I texted her in the morning, but got no response. I just let her sleep and didn’t get coffee since I knew she wasn’t feeling well and likely wouldn’t want any. I finally needed to call her, but she acted like she wasn’t asleep, even though she clearly was. That’s her normal MO: deny sleeping at all times! She took a long nap after my arrival and finally ate what I brought when she got up.

We got the “Well, you’re quite the mystery!” from all the teams Saturday. This is not uncommon for us; we’ve heard those words more times than I can count over the years. No one seemed to know why the swelling was in her upper extremities, neck, and face. Surgery threw a few ideas around, but still didn’t know much. They did go ahead and get her a unit of blood. I knew that was coming, with her hemoglobin hovering just above 7; typically, they infuse after it drops below that.

The nephrologist is one I liked; we’d seen him after the transplant. Like one of the cardiologists, the one I call Dr. McChicken, he dresses nicely. Not always in a jacket, but in a nice shirt with cufflinks, and I noticed initials on his sleeve. Both of these doctors are always dressed nicely, but McChicken does do casual weekends. They are about the same age, mid-50s, I’d say. Most younger doctors, 40 and under, don’t dress up; they just wear scrubs, even when not in the lab. 

This nephrologist is the one who is a good teacher, taking time with his fellow to explain things well. He wanted to jump to the SVC syndrome like the ER doctors. They are quick to jump to things that are not in their wheelhouse when what is going on doesn’t fit in theirs. I’m not a doctor, of course, and correlation doesn’t mean causation, but this is all too coincidental. Amanda gets almost dry, with most of the fluid off; the diuretics are stopped, her output slows, and then she begins retaining fluid. Just this time, the fluid was in her upper body, but her activity wasn’t much, either. I was down and sick, so we weren’t out and doing much, thus the fluid in her legs wasn’t bad. It all seemed logical to me, just not medically explainable.

They wanted to rule out, or confirm in the nephrologist’s case, the SVC syndrome. This usually takes a CT with contrast. Being on the kidney team, he was against that, so he chose an MRV, like an MRI but designed to look at blood flow. There was a way to do this without contrast or a contrast that wouldn’t damage the kidney. Since it was the weekend, the scan was unlikely to happen.

This swelling was localized on the right side, like we’d dealt with after the heart. Her right boob was twice the size of the other, but everything had leveled off, and all was swollen now. This was really painful for her, and she said her breasts were super tender, feeling like they were about to bust, no pun intended. It is really rough for her to get up and around, as swollen as she is.

The heart team fellow came by, one we knew well from after the heart transplant. She jumped to rejection real quick. Even though there were no clinical signs of that. Amanda has a precursor to her heart rejection, with some levels skyrocketing prior to it. We found that out last year with our bouts of rejection. That level was good, and she had no other signs of rejection. Plus, she is on three agents for anti-rejection medications, so it seems unlikely. This fellow just wanted to throw high-dose steroids at it just because. I wasn’t happy with that idea and wanted to see the mama or papa cardiologist before we did anything like that.

They needed a bunch of labs for blood cultures. These have to be from a stick and not drawn from an IV or any other line. The day before, while the kidney resident was in the room, I was griping to the ER nurse about sticking Amanda again. I told her to get the ultrasound IV tech instead, but she said she had to try at least. As hard of a stick as Amanda is, I would have told her to get lost, and if they wanted an IV to come back with the IV tech and ultrasound machine, but Amanda is too nice. Since Wednesday, the resident, had heard all my complaints, and she ordered the blood culture to be drawn under ultrasound guidance, being thoughtful toward us by saving Amanda a bunch of sticks.

It was early evening when a bed showed up from transport to get Amanda. The nurse assumed it was to take her to her room on the transplant floor, so I started packing up. It was to transport her to radiology instead. They still wanted to get her sent directly to her room from radiology. So, I left with our bags and her room number as she went for an ultrasound of her upper veins. I arrived a bit early, her room wasn’t cleaned yet, almost, but not quite. So I waited in the lobby.

It was about thirty minutes before I heard from Amanda that she was waiting for transport to pick her up. The time dragged on, an hour later, and she was still waiting. As I was sitting in the lobby, I saw Wednesday, the kidney surgery resident, come out and walk by. Then she popped her head back around the corner, asking what I was doing. I told her to wait for Amanda to get back from the ultrasound. She was leaving with her bags and came over and set them down. We talked about the ultrasound results, which I’d already read in Amanda’s MyChart. I thought she was going to sit with me, then she said, “That’s not right, I’ll go get her.” They both came back not long after that, with Amanda texting to ask me which room and relaying it to her getaway driver as they broke out!

The ultrasound showed some clots, but nothing bad. They were still going to start her on a blood thinner, though. By this point, I could tell, even on the phone, that Amanda wasn’t feeling good. She looked pretty rough, too. So anyone could see through the “I’m OKs.” She was only hurting worse. It was getting to the point where it’s even hard for her to eat; the fluid retention is so bad. I’m hoping they’ll start getting some fluid off soon.

I’m still going back home to sleep for now. I have a bag packed just in case I need to stay. Bev has been checking on Tank during the evening, so I don’t have to go back and forth to let him out and feed him. He’d had it last night and was ready for me to get home. When I got out of the car, I heard him barking from outside the apartment!