I’ve began this post a few times but only ended up with jumbled words and a lot of tears.
It’s been a few days since I was discharged and the black cloud that was hanging over my head is slowly but surely starting to pass. I didn’t want to publish the posts I wrote in one of my darker hours because I didn’t feel they were helpful, encouraging, or good pieces of writing. I release now though that chronic illness isn’t always gonna be helpful or encouraging, sometimes it’s dark and sad and depressing.
I’m going to make this as short as possible so that I don’t bore you and I don’t have to think about it too much. So after that long introduction here’s what happened.
I arrived at the hospital at 9:45 and waited till around 11:30 to go back into pre-op. They had told us to be there at ten, but never told my mom when the actual procedure was scheduled. When we got back four different people over two hours tried to draw my blood and it was very stressful. I couldn’t have the EP done without the labs but none of the nurses or phlebotomists were good at drawing blood. When we complained that we had called ahead numerous times to warn them and asked for someone who was good at drawing blood to be on-hand my pre-op nurse said, “well it looks like we might just have to cancel the procedure if we can’t get any labs.”
She was an awful woman who was incredibly rude and made the whole situation a lot worse. When the fourth lady came in to draw my blood I started to get upset. I hadn’t eaten or drank anything in 18+ hours, I had less than five hours of sleep the night before, and I was having a hot flash which was making me irritated. On top of all that this lady tells me after waiting for hours they might cancel the procedure. I started crying, which is something I rarely do, and the fourth nurse who is looking for a vein notices. She responds with kindness and sympathy, and then evil nurse #1 says. “oh, she’s just scared of the needle.”
This was when I just about lost it. I’m not afraid of needles and I had already been stuck three other times by incompetent people with no sympathy, yet not a single tear. The fact that she had the audacity after being so rude to act like I was being a baby and was “just scared of needles” made me wanted to scream. Luckily nurse four got the blood they needed and an IV, so things could started moving along.
Expect they didn’t. That’s when nurse #1 told us that my doctors current EP study isn’t going well and the patient coded. Not something you want to hear when the exact same procedure is about to happen to you. She said it should be two more hours and at this point it was 1:15pm. That was also the last time we saw her. She went home for the day and left us alone in pre-op with… no one. When someone came as overflow from post-op two hours later we asked them to call about my procedure and someone from the EP lab had to come get me since transport had gone home for the day.
I said my goodbyes to my parents and was brought into the EP lab which felt like some sort of futuristic room where they do experiments on people. It was also freezing and I was basically naked expect for the thin hospital gown so I started shaking, maybe that had something to with the fact it was now 4 o’clock and hadn’t eaten since 7 the night before but hey it was go time. A team of people started sticking things all over me and didn’t say much. One nurse was really kind and tried to tell me that everything was going to be okay, but deep down I knew she was wrong. I felt a weird combination of sad and numb as my body got my moved around and things stuck to it. I sat in silence as tears streamed down my face and in that moment I knew I had made the wrong decision.
I woke up from the study to hear nurse from the lab tell my post-op nurse that I had an electrophysiology study without an ablation. Those words rang in my ears and I began to cry yet no tears would fall. They found nothing. All day I had an overwhelming negative feeling and so I wasn’t surprised, just hurt and disappointed.
The recovery process wasn’t anything like I was told it would be. The scheduler told us that I would have to lie still for a few hours, but they weren’t very strict about it and if I had to go to the bathroom I could get up. This was a complete lie. I had to lie there for four hours without moving and wasn’t allowed to get up at all. It was much for painful than I thought it would be and I felt completely unprepared for everything that happened.
The next part was very scary. I started to feel off and bad. Those are two very vague terms, but I didn’t have a better way to describe it. My right hand started to tremor and at first I didn’t think much of it. My mom noticed it and was worried she called for the nurse and it got worse. Both my arms and legs began to tremor rather violently and I wasn’t sure what was going on. I was scared and everyone around me seemed nervous. They called a rapid response team and within seconds my room filled with at least a dozen people. They started putting more electrodes all over me for the defibrillator and wheeled the machine in. Nurses started asking me questions like, “do you know where you are?” I was completely conscious, just really scared. They gave me a beta blocker and the tremors started to slow down.
The doctor with the RRT wasn’t very concerned with the tremor and once they slowed the tiniest bit, he considered me fine and they all started to leave. The tremors stopped completely about fifteen minutes after they left. They drew some labs, but ultimately didn’t really care why I was shaking. I was very disappointed in their response. When I saw the doctor who did my EP study the following morning he said I should ask my neurologist about it and he doesn’t think it’s a cardiac issue. That’s bullshit. My heart rate and blood pressure shot up while I was shaking, he just doesn’t care enough to try and figure it out. He also added, ” in the EP lab you were shaking, so it was probably just anxiety.” To which I responded, “it was freezing in there,” and he just shrugged me off with, “yeah it’s cold.” I love having my very real and very scary physical medical issues passed off as psychological issue that I don’t have.
Overall the experience was awful and I regret it 100%. I don’t think it was necessary and I wasn’t informed enough to have made the decision. Nothing I read up on could have prepared me for all of this, and I’m extremely disappointed in the level of care I received. I’m not sure how I’m going to move forward from here, I don’t have many options. This was one of the worst medical experiences I’ve had and I’ve spared some details for both my sake and yours. I guess what I would take away from this is trust your gut. You know what’s right. Listen to your body, and don’t feel pressured into doing something you’re not comfortable with because regret is a terrible feeling.
Lots of Love,