GREAT/Bad News Today

• by LizzieB
• 2014-07-10 02:07:46
• Surgery & Recovery
• 1576 views
• 5 comments

Hello there, I'm Liz. I'm trying to decide where to begin, I'm sure not everyone is interested in my long(Though short) complicated medical history. If you only read the first few sentences of this post, here's what I'd love to know from you.

Your top tips for pacemaker surgery: Anything special to bring along, anything to be careful of, any funny stories ;)

Your top tips for pacemaker recovery: What helped your pain the most, how long was your recovery, when could you get out of bed after surgery, ect.

Your most noticeable lifestyle change/symptom of having the implant: Can you feel it pacing, do you have full range of motion in your arm, do you wear a medical ID bracelet, do you get a lot of pat downs at airports?

Also, has anyone here had 'post junction rhythm'? I know they come in varying forms, I've developed one today and though my doctor is very good at explaining, I would really like to hear anything you know or have heard.

I would love to work backwards to make this less boring, but I can't seem to. If you're only interested in my most recent need for a pacemaker and such, skip a few paragraphs. Alright? Alright. So, as I was saying, hello there! I'm Liz, 19 years old with a post junction rhythm after sinus node ablation. About a year and a half ago I started having some strange chest pain, and after a tiny fever I woke up too dizzy to drive. I went to urgent care where I was treated for bronchitis, then reactive asthma, and then forced to get a grown up primary care doctor(I was seventeen turning eighteen when I got sick) who sent me onto a pulmonologist. I was out of breath, shaky, exhausted, with lots of chest pain. When they walked me around with a pulse ox my oxygen was dropping into the seventies, so they figured it was a lung problem. That doctor decided I needed to see a cardiologist, who decided I had a PFO(tiny little hole in the middle of my heart, a birth defect), and sent me onto another cardiologist to close it. Well, the bubble test was wrong, there was no PFO. Rather, tiny malformed veins in my lungs sending insignificance amounts of oxygenated blood back to my heart.

There's one pointless cath lab procedure, are you counting?(You'll only need three fingers.

So I was sent onto a rhythm specialist, along with a rhuematologist, and an edocrinologist. Did I mention my thyroid levels were barely hyper, it was swelling up and down, and no one quite knew what to do? They still haven't decided on that. Anyways, back to my heart. My rhythm specialist, a brilliant man, was a little intense. He's very intelligent, but when he's confused or anxious he can be very intense, almost interrogating. Best doctor I've ever had, possibly the smartest person I've ever met, but I definitely cried after a few appointments. He's great at ruling out everything, so after he discovered that I most definitely had some tachycardia going on, we did an EP study.

My resting heart rate was 120 at the start, and when he gave me the tiniest bit of medicine it jumped up. Unfortunately, nothing to ablate. I was diagnosed with Inappropriate Sinus Tachycardia, and my life was rather sedentary. This was last november. Since then I've been able to do very, very little. My heart was very over reactive to the slightest movement, so I mostly laid on the couch and tried every drug I was asked to try. Ablating the sinus node can lead to a pacemaker, and I'm young, so we were very cautious in considering every other option. Unfortunately a stress test a couple of weeks ago showed a significant worsening. Not only was my heart rate jumping up into the 130s every time I took a breath(major over reaction on my heart's part), after going a few mere minutes on the treadmill I had to stop because I felt as though I were drowning. My heart rate had a very hard time coming back down, and my cardiologist ordered an ablation and an echo to check for damage. Fortunately, no damage!

AND TO THE PRESENT!

I went in yesterday morning, making the mistake of booking an afternoon appointment. They were running late, as they often are. I try not to let it bother me because I know he's never left me when I needed him for the sake of being 'on time', so I don't mind waiting my turn. Super easy check in, same nurse and cath lab team as I'd had before, so I was pretty comfortable. I was, however, nervous about whether or not I would wake up with a pacemaker. I'm not afraid of having one if I need it, but I don't like going under without knowing what I'll wake up to. Fortunately/unfortunately I never actually went to sleep. I have a low pain tolerance, not in the sense that I don't try to tough things out or beg for drugs, but that I feel pain very easily. He was confused from the start about my chest pain, even at lower rates, but I know it was my body's way of telling me to sit the heck down. So anyways, apparently I had quite the rough ablation. I remember a few dull moments(I was bored, go figure), and almost all of the pain. None when they started(though I'm told I claimed to feel it), but multiple times throughout the rest of the procedure. I remember specifically two of the three times he ablated...woah nelly. The only way I can describe it is if someone took a blow torch filled with fire, menstrual cramps, a sunburn, and bruises and lit it up inside my chest. It spread through and up my neck, and then I yelled in my drugged, shocked state. He asked them to give me more drugs, the second one was just as bad if not worse. The pain didn't leave when he stopped, it ebbed, and stayed irritated. Now, mind you, I know this is not the normal ablation process. Most people feel nothing, and most people remember nothing. My EP study was pretty darn painless, and very smooth. But while I'm quite sensitive to pain, I am like a tank against numbing medication and pain meds. It takes two to three times the normal amount to put me under/numb an area, and I stopped taking the pain meds because they couldn't touch it. But I'll get there.

So I was bored for a while, and confused, and when I asked the random man next to me(Tim?) if he'd ablated anything he said yes. I asked if he found a bad pathway or my sinus node. Tim had no idea or wasn't permitted to tell me. So they take me back to my room, and I was going off about how much it had hurt. My ankles were also bothering me, but I had zero pain at the catheter site. I know, strange. I had been expecting a pacemaker, so I was a little surprised at not having one. There was a blissful moment where I saw my heart rate at sixty for the first time since last may, and I nearly cried. Unfortunately I began to feel like something was really, really wrong. I kept turning to look at the monitor every time I felt weird, only to find it in the forties. I assumed that this new rate was too low for my body, but everyone kept insisting that I was fine.

My family left, and soon after I started having trouble seeing. I'd been allowed morphine, but after the percocet nearly blinded me(I'm being dramatic, it was blurry) I decided I didn't want any more. They weren't helping anyways, so the nurse called my doctor and he said to take some ibeprophen to help the inflammation in my chest. It basically feels like I've got a bad sunburn inside, but the technical term is pericarditis. No big deal, not a problem. I got a little bit of sleep, maybe an hour or two, and when the nurse woke me up I asked to be walked(the two feet) to my bathroom. I felt significantly better standing, a fact that would soon make me believe I was crazy. I went to the bathroom, felt okay, sat back down....horrible.

It was the start of a very long, very painful night. On top of the pericarditis I was having some serious problems with being dizzy. Every time I fell asleep I would awake with a jolt within minutes, dizzy, and woozy, and nauseous. I kept telling them I was too dizzy to sleep, but I didn't need help to the bathroom because I felt find standing. You can imagine the looks. I was starting to believe I was losing my mind a little, even though it only got worse and worse as the day wore on. They had a very nice, very old doctor come to assure me I wasn't dying, and then mine came around mid morning.

He'd never push you into a diagnosis, which can be hard. It requires brutal honesty on my part, which is difficult when I know my symptoms don't make any sense(to me). You're fine to walk around but you feel dizzy and awful in bed? Someone needs attention. Anyways, he came back later and had me walk around the office a few times, and explained that I had developed an arrhythmia called post junction rhythm. Apparently the AV node tries to help out now that my sinus node is damaged, so every time my heart rate gets low it starts going off. Unfortunately, this makes different parts of my heart beat at different times. Correct me if I'm wrong, I was groggy and I haven't slept in two days haha.

But he wasn't SURE if it was bad enough to put a pacemaker in, so he left for a while and came back. Lucky me, I'd just been doing my little game of nap-wake-nap-wake and I felt horrible. He asked again and kept me blabbing, and I told him I had this immense pressure in my throat and dizziness while lying down, occasionally some while standing, but for the most part I felt better when I stood. He was giving me this 'look', and his 'deep thinking' looks a lot like his 'are you sure?' so I just blurted out some "I don't know"'s. And then, moment of truth, he asked if I was feeling it now. The answer was yes, but not the worst I'd had, so I hesitated for a minute before deciding I was. He disappeared to look at the monitor in the other room, came back, and said I had two options. A pacemaker tomorrow, or he could send me home with something to help me sleep and give me a few days to see if it magically disappears, or the sky falls, or I win the lottery. Basically it's not happening, but I needed to go home and take a real shower and all that. Apparently a pacemaker should take care of most of the bad rhythms, though I may still have a few here and there.

And so, here I am. I took Lorazepam about an hour ago, and so far...not really feeling it. Groggy, maybe, but I am forced to continuously stand to keep my heart rate up or I go right into junction. If I don't sleep tonight I will be joining the pacemaker club very soon, and if I do it will be sometime next week. I would really appreciate it if you would answer the questions above!

All details, stories, and tidbits would be appreciated!

I'd also just like to say that I feel very, VERY blessed. It's been a rough year, a tough couple of days, but I am very grateful. There was a time I thought that I would have to suffer through my tachycardia for the rest of my life, and I sit before you at 56 bpm. This arrhythmia is a tiny speed bump, and I'm lucky that a pacemaker can fix me. This is a happy, happy moment. It's great that there's an online community with so much information and fellowship.

Looking forward to hearing form you!