Friday, May 24, 2013

Pacing myself

I had an appointment with my cardiologist, this time he said if I had any fainting spells, dizzy spells, times when I was walking around my house and I felt tired, like I was dragging 100's of pounds that I should call them. That was also the appointment I mistakenly took Danger too.... The one where he cried the entire time, and freaked with at the doctors.... I'm glad I listened to the doctor though. I'm glad the doctor repeatedly got my attention, and made sure I listened.

Well, Monday after Mother's Day (what is it with Mother's Day!?!?!?) I got dizzy and I was feeling sluggish all day. So I called the Dr on Tuesday. They sent me a halter monitor on Wednesday, then had me come in for a cardiac MRI, that same Wednesday. The MRI was so they can "map" out my heart. So they could put the pace maker in the next Monday. Yup, that's right, I got a pace maker at the age of 26.

When Shark and I moved here, I went to the cardiologist, as a follow up from my heart surgery in Colorado. All my life, I have gone to pediatric cardiologists. The butterflies painted on the ceiling, stars on the tile floor telling you where to go, stickers at the appointment counter, puzzles in the waiting room. I was used to it, and it didn't bother me. Well, here in Utah, my pediatric cardiologist is also an adult cardiologist. I told him, before the surgery in Colorado, I didn't think anything would ever go wrong with my heart, ever again. I thought, One fix and I was done for life. Silly me. He told me the truth of it all. He said, By age 30, I would need a pacemaker, and by age 45-50, I would need a heart transplant. He didn't really sugar coat it at all. I am so grateful for that.

So I knew the pacemaker was coming. I just didn't expect it to happen all in one week! I knew I had about 4 years MAX left until I needed one. Every time I had gone to the cardiologist, he would look at my EKG and tell me if my heart action had decreased at all, even the tiniest bit. And every time I went, he would say, It looks just a tad bit slower than it did 6 months ago. But my heart is still strong. I mean, considering the weak side is doing the job that the stronger side is supposed to be doing... The doctors have said I have exceeded all expectations, most patients with my condition need the pacemaker by the time they're 20, at the end of their 2nd decade. I'm in my 3rd decade, and nearing my 4th!! The doctors are all a little surprised. It's just my sinus node, the one that tells the heard to beat, that is starting to slow down.

It's hard to think I'm going to be 26 with a pace maker. It's kinda scary, I mean, I'm just barely old enough to rent a car! I know there are patients younger than me who have pacemakers, but it's still kinda scary. I've had all kinds of thought running thru my head. I know it will give me longevity and hopefully more energy. But sometimes I wonder how I'll be right after the pacemaker is put in. Will I be able to pick up Danger? How will the stitches limit me? How long will I be out?


Ok, I got it done on Monday. I have come to realize, I wake up from anesthesia like a beast. Apparently, I said my pain was a 9! Which I'm not entirely sure it was a 9..... Anyways, I didn't threaten too many people, so everyone was still friendly.

The Dr's tested my pace maker, and everything worked great. No disruptions, everything worked amazing. Well, I woke up and started to walk around a bit. Once I sat back down, my stomach started spasming, it was just like the bottom part of the hiccups. Well, it was like 10pm, the nurse called the on call doctor, who thought it could have been my body's response to pain or it could be my being blocked up. So they gave me morphine and miralax. The morphine apparently worked so they didn't pursue it much farther, until the morning.

As soon as my cardiologist walked in, I showed her my hiccups. She immediately said, Oh no! And she explained that my diaphragm was getting paced along with my heart. In normal anatomy, the leads go in right atrium and the right ventricle. In my backwards anatomy, my leads go in the left side. The phrenic nerve come down from the neck (C3-C5), the nerve splits and the left phrenic nerve passes over the pericardium of the left ventricle and then down to the diaphragm. (My nerves are in the correct location, it's my heart that is backwards... So the nerve goes around the back of the heart, where my leads are positioned....) So when the charge goes down the leads, it catches the phrenic nerve and my diaphragm is paced right along with my heart, which right now is set at 60 bpm. 

So 60 heart beats and 60 hiccups... It doesn't hurt, it's just really really annoying. And when I'm talking, I can't get enough breaths, well enough deep breaths. Plus, when I'm hiccuping, I don't want to eat anything cuz my stomach is getting tossed around and I don't want to hurl.... 

Anyways, the Dr's have tried programming my pace maker to lower voltage and all kinds of combos so my diaphragm doesn't pace with my heart. But the end result is they can't keep me at a lower voltage for an extended period of time, if my heart were to build up a resistance to the charge, the pace maker wouldn't do any good. So on Tuesday, the Dr's are going to replace the pace maker and reposition the leads so my diaphragm won't beat with my heart. 

So yeah... that's happening. I don't have a lot of pain, but I can't lift my left arm above my shoulder, and I can't lift more than 5 lbs with it. So basically, Danger and I have been just sitting around the house, watching TV, so you know, nothing out of the ordinary. :)

I've been doing good, it's just hard when things hurt. Also, this morning, when I sat up in bed, I swear I could feel the pace maker slide into place... It was soooooooo freaking weird. Danger has been good, he's been fussy, but he's been just fine walking every where, and he usually doesn't need to be picked up, so I'm grateful he's good with me not holding him. We've also been sleep training him in places other than his crib. So he had NO problem at all sleeping at grandma's and napping at Katie's. Which is awesome. We were kinds worried about it. Shark has been such an amazing help, he's been wonderful. :)


Ok, so I went back in to get the leads repositioned. It was an awful week. Not so much physical pain wise, but mental pain wise it was awful. I feel like a broken person. I feel like part of me is missing, is not fixable. The open heart surgery 4 years ago was worse surgery wise, but mentally and emotionally, this one is worse. With the OH surgery, it was just me and Shark, and this one, there's Danger too. And all these stupid WHAT IF'S start popping up. With the 1st surgery, these thought sorta came up, but going BACK in makes these thoughts pop up more! It's awful.

Anyways, Shark has been parachuting. And in a way it's kinda worse for me. He's off jumping off cliffs and flying, and I feel like this broken person, never to be repaired... But at least it's a good distraction for him. He's had something else to fill his thoughts than everything going on with me.

When I went back in, I talked to the Dr's and they asked if I had any concerns, and I told them I react badly to anesthesia, with nausea and dizziness. The Dr's mixed up an awesome cocktail of pain relief and anti-nausea meds, and when I woke up the 2nd time, I was able to walk around right away and eat something, like RIGHT AWAY! It was awesome. I felt so good.

The difference from last week to this week is like night and day. I feel great. I really do. I have energy, I'm hungry, I'm not throwing up, I can chase my little man around! I feel freaking awesome!!! Seriously! The thing about it is, I don't really recall how I felt BEFORE the 1st surgery, but I think I feel so much better. I feel amazing!

I am so grateful that Shark and I had started to talk about getting as much information about the pace maker, before we knew we needed it. It helped prepare us for the totally random and shocking announcement - Hey, next week you're going for surgery.

I really do feel great. It has taken every one of us by surprise. 

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