EP Study Update

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,

Alyssa

 

Advertisements

Pre-EP Feels

I wrote about my first appointment at the electrophysiologist here.

Tomorrow I am having my Electrophysiology study, and I’m not quite sure how to feel. I’m still not particularly nervous,  just anxious to get it over with. These past several weeks have gone by awfully slowly and I’m starting to feel a bit impatient. Scheduling appointments with any specialists takes a while, but scheduling a procedure with a doctor who’s a specialist within a specialty can be particularly difficult. I’m lucky to have gotten in as quick as I did, even if it has felt like a really long time to wait.

I guess I’m mostly just not feeling very hopefully. I don’t think they’re gonna find any abnormal heart tissue to ablate which means the procedure won’t change anything for me. I’ve had so much testing done and it always comes back normal or just barely off so that doctors aren’t sure what to make of the results. My dad told me he has enough hope for the both of us which is a nice thought, but seems a little rose-colored.

One small thing that’s concerning is that you can’t eat or drink after midnight before the EP. This is routine and not at all surprising but with my terrible veins I don’t want dehydration to make them an even bigger issue. I also am currently taking Topiramate which dehydrates you, so the combination of the medication, no water, and my small deep veins could make placing an IV very difficult. They also go through a major vein in your hip to place the catheter in your heart and I don’t want the placement of that to be an issue. Luckily for me I’ll be asleep at that point and it will be their problem. 🙂

The main concern I have is this procedure being unnecessary. What do I do next? I’m supposed to start Botox soon but I’m not feeling super hopeful about that either. Diagnosis wise I’m not sure what we’ll do but we have to continue on.  If they don’t find anything it’s still always good to have more information even if it doesn’t give me a diagnosis it can help rule other things out. I know this is just a low point and I’ll find some hope and pick myself back up soon. I could be completely wrong and this could solve a small portion of my health issues. As someone who likes to be right this is one of the few times I sincerely hope I’m wrong.

Lots of Love,

Alyssa

 

Cardiac Electrophysiologist Update

Yesterday was my Electrophysiologist visit and it went quite well.

We waited for a bit, but once we got into a room the doctor was really quick. He had already reviewed the stress test, EKG, and echo from the cardiologist and had an action plan, which was refreshing. His plan was not one I expected though.

cfhg369carele_001

The doctor said he could do another Hilter monitor but this time for 3-4 weeks, but didn’t think the information would be anymore helpful than the previous 24 hour one was. Instead he suggested an electrophysiology test. This is a procedure where they go through a vein in your inner-hip/groin area and go into your heart with a catheter. If there are any extra chambers, which is what they’re looking for, then they would a cardiac ablation.They also stimulate the heart to see how it responds. He isn’t expecting to see extra chambers, and thinks the final diagnosis is going to be Inappropriate Sinus Tachycardia. The doctor said “Inappropriate sinus tachycardia is frustrating, because it happens for no reason and you have to rule out other things to properly diagnose it.” Great, another annoying medical condition that doesn’t seem to really have a reason, I might as well collect them now.

Whatever it is, it’s going to be nice to get a definitive diagnosis about something. He said the scheduler should call before Monday afternoon, and the procedure will probably be done in the next 3-4 weeks. That’s really fast, and I’m surprised he thinks he’s going to be able to do it so soon. You normally have to wait 3-4 weeks at least to get a specialist appointment, let alone schedule a procedure.

Oddly I’m not nervous at all, which kinda weirds me out. Lately I’ve felt like everything that’s been happening isn’t actually happening to me. Like I’m watching a movie and someone else is going through all of this; it’s been weird. Even when I look in the mirror I don’t see myself, and I don’t mean that metaphorically. I’m almost surprised at my reflection every time, and I don’t think it’s just the sudden weight gain. When I look at pictures from a year ago when I was really thin, and had my long golden hair, (before I cut it all off and dyed it), I also don’t see me. I’m not really sure what I look like, and for someone who doesn’t have vision problems, I feel like thats an odd thing to say. Maybe I’ll get nervous when it’s planned or a few days before the procedure, but for now I feel kinda numb about it.

I’m happy we’re doing something about the tachycardia, because I honestly waited way too long to go see a cardiologist. The chronic pain had always been the most important thing in my eyes, so I put this on the back-burner. I’ve brought it up to plenty of doctors, but they’ve all shrugged it off and just said “that’s weird.”

So, here’s my update since for once there’s actually something to report instead of just medication changes. I hope you’re all doing well, and are feeling okay. I’d love to hear about what’s going on in your life!

Lots of Love,

Alyssa

Update: The EPT is scheduled for 3/2/17. Longer than he said, but not too bad!