Since it was a weekend, Sunday didn’t produce much for us until late in the evening. The nephrologist kept leaning towards SCV syndrome. The SVC is the vein that drains blood from the upper extremities into the heart. From the looks of Amanda, it did seem that could be it. However, with decreased output and increased kidney numbers, it seems unlikely. That is what I thought and seemed to be the general consensus from the heart team. It was something to be ruled out, but the cardiologist said it was unlikely when I questioned it.
The swelling was killing Amanda; she looked so uncomfortable. The nephrologist asked me if she looked better in the face and neck, and she did. Later, though, when Amanda showed me her chest, it looked as if the fluid had just redistributed to her boobs. They were at least 4 times the normal size. That may sound like something many wouldn’t mind the effect of, but they were so tight they looked like they were about to burst. She just looked uncomfortable moving about. She was sleeping on and off all morning and afternoon. When she woke up once, she looked miserable, and I asked: “Are you alive?” To which she replied, “Barely!”
The nurse had come in and said something about a CT. I questioned about the MRV they had mentioned since I was worried that contrast would cause issues with the new kidney. She said she’d put in a consult, and later that afternoon the surgery resident showed up. This is the one I jokingly call Wednesday because of her ho-hum attitude. She has grown on us and we on her, I think. She isn’t as down and out lately, and I like her enough, especially after she rescued Amanda from radiology, that I found out her real name, Lena! She explained that they spoke with radiology, who said there was no way to rule out what they were looking for without contrast, and they decided, with the kidney team, that the rewards outweighed the risks.
We’d watch a couple moves, and Amanda was out for most of both of them. She’s not getting much sleep at night, and she feels like crap, so she just naps throughout the day. I’d planned to leave early, around 8 pm, when we finished the second movie. I needed to do laundry and get some decent sleep myself so I could be in early for rounds Monday morning. They ended up coming to get her for the CT before we even finished the movie. I went ahead and left when she did.
I’d finished my laundry and Tank, and I finished our late-night snacks we’d raided from the pantry, with a couple of emotional-support donuts added in. Just as I was settling to bed, I checked for the CT results. It wasn’t what we expected, and it’s the same issue that led us to Amanda’s first open heart so many years ago: SVC syndrome. This time it’s caused by her dialysis catheter. A clot formed on the end of the catheter, causing issues with her SVC. It was a while before anyone came by to talk to Amanda, but Lena, the surgical resident, came by to let Amanda know the results. They were going to bring in interventional radiology and vascular to figure things out. Amanda has really been wanting to get the dialysis catheter out. I told her that this was one hell of a way to force them to remove it!
As usual, the kidney surgery team was the first to come by. They really didn’t have the answers for us since this was out of their wheelhouse. I had some questions, but they didn’t have the answers for us. This surgeon was the one we’d seen at the kidney transplant consult. She mentioned that the kidney numbers would likely improve a little once all these blood flow issues were resolved.
The nephrology team was the next to round. The good teacher was off rounds, and a new, younger surgeon was on. She looked young enough that she couldn’t have been practicing very long. I asked about the correlation between the lowered output and the kidney numbers trending up, but she didn’t have much of an answer. She definitely didn’t have the confidence of it as the surgeon did. I was really hoping the good teacher was still on; he was bright and would have an answer and an explanation for me.
It was a while later before we saw anyone else. The cardiologist from the week prior said who was rounding after her, and it was one of our favorites, so we were looking forward to seeing him. They didn’t show up, though. The vascular surgery fellow and resident were next to come by. They were asking questions about the swelling and if I noticed it. I said how bad it was and showed him a picture of Amanda from the day of discharge and said, “Look at the difference.” I don’t think everyone realizes how bad this swelling is.
The fellow mentioned they could go in and get the catheter out without dislodging the clot. They could suck the clot out first, as well. The thought was to get it out and wait to see if symptoms persisted enough to do an angioplasty, ballooning of the vein, and maybe place a stent. The fellow said something about going home then coming back for the procedure to remove the catheter. I popped off about this is why we were here in the first place. He hadn’t even looked at her chart enough to know she had been home since the kidney transplant. That was my first issue with him.
Since Amanda had issues with her SVC before and had a graft placed around it, the entire SVC was reconstructed during her first heart transplant. So I was worried about doing anything in that area at all. I questioned the fellow about that specifically. He didn’t even know she’d had a heart transplant, much less a second one! It was all downhill from there. I just wanted to tell him to go get his surgery daddy, and we’d discuss things with him from then on. I think one pertinent step before you come in to make recommendations on the case is to review the patient’s chart.
One thing I keep coming back to is the dialysis catheter. We are used to PICC lines and keeping them flushed, whether or not you use them. We asked multiple times before we were discharged after Amanda’s kidney transplant if the dialysis catheter needed to be flushed since she wouldn’t be getting dialysis. They said there was no need. Like a PICC line, it is locked with a blood thinner to prevent clotting inside the line. It was still odd to me that it didn’t need to be flushed. The line hasn’t been touched for nearly a month, so I just wonder how much that has to do with it forming a clot. Maybe no correlation at all, but it seems fishy at least.
A cardio fellow we knew was the next to see us. The cardiologist we liked wasn’t rounding this week; she mentioned someone else was on. She started out saying something about us going home on a blood thinner. The surgery team had mentioned that as well. But she was talking about going home without the catheter being removed. There had been talk about sending us home and waiting for the blood thinner and time to help dissolve the clot. This was the first we’d heard of that; Amanda and I both blew up.
Amanda explained how bad she felt, that she didn’t feel comfortable going home, and that she couldn’t breathe unless she were sitting up. I expanded on it and was like, this is the entire reason why we’re here, saying how Amanda could barely get up and get to the bathroom, much less get around to appointments. Then I went in on how the vascular fellow didn’t even know Amanda had a heart transplant or know she’d even been discharged since her kidney. This poor fellow was the bearer of bad news and quickly began to backpedal! I saved the rest of what I had locked and loaded for the vascular fellow and his attending when they come back!
I think part of the issue, which I’d questioned Vascular about, was contrast. They would need contrast for their procedure to remove the catheter. The kidney team seemed to be the one who wanted to send us home and have us come back later because of this. We raised all kinds of concerns about the contrast, and they said it was needed. Now we get to the point of doing something, and they want to wait. That was beyond frustrating. I don’t think either of us is comfortable with her going home, given how bad she is feeling.
On the other hand, I don’t think we want to wait for the clot to slowly dissolve in the hospital either. We likely won’t know anything till tomorrow now. Really hoping they can come up with a solution that works to get things done soon.
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