I was up early this morning, before 5, to get to the hospital in time for all rounds. I had coffee in hand on my way in for sure. I walked in as the surgery NP and new resident were going over things. The NP was one we knew well, I liked her; she said, “You didn’t miss much,” as I walked in. They didn’t know much yet, but did know that their attending and the interventional radiology (IR) attending had spoken. This complicated case had gone up to the attending level only discussion.
I told both the NP and resident that we wanted to speak to the attending. Then the resident looked nervous as if I wanted to talk to their attending. Relief was on her face when I said no, the IR attending. I let them know we were officially done talking to the baby doctors, that this was above their level, and that we hadn’t had a good experience with either the vascular or IR fellows. I was sad that vascular was now out. I was planning to let his attending know how bad an experience we had with him; I wanted to help provide a teaching moment! I’m not much on being a rat, but when he didn’t even know we had been discharged from the kidney or that Amanda had a heart transplant, that was the line.
The regular rounds were big rounds, with both surgery and nephrology together. It felt like the CVICU rounds, just nowhere near as intense. Surgery went over the procedure a bit but said IR would be by to clarify things. I held the questions burning a hole in my pocket for them. Amanda’s white count was down, so nephrology dropped some rejection meds because of that. She was never able to stay on the third-agent meds after her heart, just the main anti-rejection med and steroids only.
They ended up going up on the steroid, but didn’t tell us in rounds. I’m not a fan of changes we don’t know about; we are very active in Amanda’s care and like to be on top of things like that. I already had the NP come by a few days ago because they tried adding something other teams didn’t want. The communication between teams is lacking and a bit frustrating.
One of the meds they added we weren’t expecting that I questioned about was a diuretic. Nephrology and heart didn’t seem to think the kidney would be able to see the fluid up top and might not be able to get it off. Thus stressing the new bean out trying to make it get rid of fluid it couldn’t see. The explanation we got was that since they were giving volume in the way of a unit of blood, they wanted to pull some off. It made sense; we just wanted to be apprised of the information. The kidneys could see some fluid for sure because Amanda’s output went up to 2 liters that day!
They had Amanda NPO, no food, since they might be able to get her in for the procedure. These NPOs are always a pain; they starve you till we don’t know when, essentially! So the day was just waiting for an OR slot. We still hadn’t seen the IR attending to ask our questions, and we weren’t signing some rando consent with a baby doctor! The attending finally showed up. A fast talker, he laid things out well. I think he was prepped that we’d have some real questions, so he hit a good many things and knocked a few questions I had out right off the bat.
The clots and narrowing extend above the SVC, a large vein that drains blood from the upper extremities into the heart. It extended into the brachiocephalic veins, which connect to the SVC from the right and left sides. So, multiple stents may be placed to open everything. The IR attending had talked to the surgeon who did Amanda’s heart transplant to get his clearance. He told him he remembered thinking things were tight there and that something might be needed later on, so he wasn’t surprised. All of this area was reconstituted during Amanda’s first heart transplant. I questioned about placing stents in an area like that, but the IR doc said that with the time from the second transplant, much less one over 5 years ago, time was on our side. He reassured us that if there were an issue, he’d have some coated stents on standby to fix any issues or a ruptured vein.
Stenting this area isn’t a normal thing, but at the same time it is common in transplant patients, the IR attending said. The bigger stents he’d use are actually designed for the legs. He also said, though, Amanda was swollen up; she wasn’t having the tough issues common with SVC syndrome. That meant “collateral” veins had already established a flow around the blockage. After Amanda’s previous SVC syndrome some 15 years ago, which lasted a while, she likely had many of these collateral veins already in place. Which may be why it took so long for the visible symptoms to show up this time.
With the issues of Amanda’s right side swelling early on after the heart transplant and her problems lying flat, all of that is likely related to the SVC syndrome. She has issues with scarring, and when the dialysis catheter was placed, in a fresh heart and SVC as they were healing from surgery, she likely had this damage a while. Hindsight is 20/20. With all the scans for the right-side swelling, I’m surprised no one caught it, but no one was looking for SVC syndrome specifically like they were this time.
I asked about how they were going to gain access for the procedure. He said both groins and an arm vein. Then he said I don’t know if you like gory details and, without missing a beat, he said, “We call it body flossing!” They fish wires from top to bottom pretty much, so they have good access to thread the stents in, he explained.
The next question was about blood thinners. I knew we’d be on them for a while, 90 minimum, after the procedure. There are some better ones now that don’t require blood tests, which Amanda has been on before. He wants her to stay on them for at least 2 years. Saying if she hated them at the 2-year mark, we could talk about it. I can’t stand them. Amanda bruises so easily.
Side story on that, real quick. While on blood thinners, Amanda had bruises all up and down her arm when she went into our small town post office years ago, pre-first transplant. The attendant, who was new and didn’t know us, asked her if she was ok and safe at home, alluding to abuse. Amanda was just walking around with these bruises, and people who don’t know us were thinking I’m a wife-beater! So, no, I don’t like the blood thinners, but for an unconventional reason!
Bev came by to see us for a while late afternoon. She is always great, being a heart patient herself and with Sam, her husband; as a physician, we can’t talk all this hospital stuff without explaining it to her. We’d filled her in on everything and griped about the baby doctors without parental supervision. She was getting up about to leave, then an IR doctor came in to get consent signed. Later, Bev said when she saw his name tag with resident, aka “baby doc,” under it she sat right back down for the show!
What preceded was the worst presentation of a procedure that could have ever happened! It really was pitiful, and he seemed like it was his first day. I let him do his thing, but I was locked and loaded for my teaching moment. I came out of the box with, “Well, your attending has already been here and said this and that,” and explained things. Then I went on to tell him how it was really going to go down. Amanda was trying to make him feel better, knowing where I was going with this all! Bev’s face couldn’t hold it back as he was backpedaling, stuttering out how if the attending said that, then it would probably go that way, and apologizing for the confusion! When he left, Bev said, “Well, he’s never coming back in this room!” Poor kid got a lot of pent-up aggression towards baby doctors let loose on him.
Bev later called crying; at first I was startled because she had just been to let Tank out. She was crying from laughing, telling Sam the story of everything with the baby doc. After a debrief call with both of them and lots of laughs, we found out that July 1 is when the new round of baby docs comes in! Sam had a brand new resident with him today. So, the IR resident really was a baby. They go by post-grad year, PGY, whatever. PGY-1 is the intern year, and PGY-2 is the first year of residency. So by the sound of his presentation, he was a PGY-2. Essentially, he is a 2-year-old baby that needs full-time supervision and shouldn’t have been sent to us on his first day!
The OR time is 2 pm Thursday. Amanda will go under general anesthesia for this. As anything referred to as body flossing should be! The catheter she has is tunneled. It was literally tunneled under her skin about 6 inches. It was really painful for her after she had it placed. So, I’m sure it’ll disturb all of that area and won’t be fun. Also, with the current blood thinner and multiple access sites, she will be all bruised up and sore, I’m sure.
This hospitalization is dragging on. The surgeon seemed to think we’ll be here for a bit longer since they will need to get blood thinner dosing ironed out. One way I can gauge the length of a hospital stay is by how many rolls of TP I smuggle in. Tomorrow will be roll 3; I don’t want to make it to roll 4!
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