Atypical

When patients are admitted to a hospital for an extended time, they typically are given shots of blood thinners. This is usually in the belly. Amanda’s belly is black and blue now, and it looks horrible. Nothing we aren’t used to; she was on a blood thinner for a long time before transplant. One side of her stomach is far worse than the other. So the nurse said she would give her the shot on the other side to make it even!

As I woke this morning, I had terrible back pain that lasted until the Aleve I took kicked in. My bed is not cutting it, and I may end up in the recliner, which my legs hang off of about a foot and a half. It is still better than a lot I’ve slept on, much better than pulling two chairs together or sleeping in the back of an SUV. Both of which I’ve done at hospitals!

I’m not sure if the nurses here on the floor don’t give good reports to each other, but none seem to know what is going on. One today asked what the plan was, and we were like, well, we don’t know. Then she said transplant? I popped off real quick with a forceful no! I’m not even sure she knows Amanda had a transplant. Insert facepalm!

The hospitalist seemed to know what was going on. We saw her in the ICU after the transfer order came in, but we’d moved to the floor. She seemed irritated when she asked about the plan, and we explained that they didn’t know. Amanda told her she wanted a consult with the EP team. I mentioned the lead EP’s name, and she said she had his number and would talk to him now.

I left for coffee not long after the hospitalist left, and when I returned, the EP fellow was sitting in my bed chair talking with Amanda. He finished answering Amanda’s question and then summarized what they had talked about. I like him; he has an excellent bedside manner and will make a great doctor. He felt that we had exhausted the medication options, suggested another ablation, and went over the risks. He mentioned the possible need for a pacemaker and discussed a newer headless-style pacemaker. A risk with a pacemaker is infections with the increased immune suppression Amanda is on. We fought many infections with different pacemakers in the past; it’s no fun. I said he would speak with the lead EP, but everything would still be pending our cardiologist’s approval. He talked about how Amanda’s issue is just not a typical case with a transplanted heart and is odd.

Our cardiologist does not return till next week, so sadly, it’s just a waiting game. I want to just go home if that’s the case. If we do leave, we’ll need some type of pain made besides IV morphine to keep her pain at bay. She is also still overloaded with fluid and taking IV diuretics. This is the case with the fast rate; it is essentially causing heart failure symptoms. I know it is not an option to leave unless they have a solid plan for home care. So, with the EP fellow mentioning an ablation, possible pacemaker, and having to wait on our doctor, I told Amanda we’d like not even get out of here till next weekend. She said that’s not nice!  

I heard Amanda cough; it was a sign her heart rate was increasing. She has a specific cough brought on by the rate. I told her to push your button now so we don’t have to wait; I knew her chest pain would follow soon. It was at least 30 mins before we got the pain meds; their response time is ridiculous here. While Amanda was waiting for the pain meds, the same cardiologist from yesterday came by. He didn’t seem to want to be bothered by us. I didn’t even bother asking him anything, either.

The lead EP came by in the afternoon. I wasn’t expecting him, but I was glad he did. He wants to take the conservative route and try a new medication that works to raise the blood pressure but also has the effect of lowering the heart rate. He will not proceed with this treatment until he speaks with our doctor next week, though. He wanted to be clear on the risks involved with another ablation. He explained the risks of doing another ablation. With the spot so close to the sinus node, the natural pacemaker, there was a chance it could be damaged to the point where she would need a pacemaker. When I pushed, he said there was a 70% chance of a pacemaker if we did another ablation. Amanda asked about the leadless pacemaker, but he said in the real world, they only last 5 years or so with the pacing she would need. A single lead is what he recommended to stay away from the valve issues of her past.

As I mentioned, this seems like the old issue we had when everything started so many years ago. The EP mentioned that, too, and spoke of how odd and atypical this is. Having this issue in a transplanted heart, much less the same issues as before is unheard of. Leave it to Amanda!