I have sat down so many times to try and write my story but it has never articulated into anything that felt right. I’m not sure if I’ll ever get it “right”, so let’s try this. You see, I’ve been through a bit of a health journey, but it has affected me in so many more ways than just physical. Hopefully, my story will help someone, and we can continue to heal, together. I’ve been through so many emotions since this all started, anger, defeat, bitterness, even success. I’m ready to share it now, so I’m finally sitting down 3 ½ years later to write it all out.
My whole life I have had an irregular heartbeat, it was diagnosed at 16 years old as 1st-degree heart block (benign) 18 years old – still 1st-degree heart block. I never had any restrictions, I just had to continue to get checked yearly. I was a bit of a partier as a young girl, I smoked cigarettes, and (thought I) was invincible. As time went on and I got a little older, I thankfully partied less but couldn’t quit those cigarettes. At 23 years old I was still at my 1st-degree heart block but now going into 2nd degree in my deepest sleep. Still, all of these things weren’t anything I had to worry about. The doctors said it was ok, but that I might eventually need a pacemaker by the time I was 40. So, I lived my life as I wanted, got checked every year, was told the same news and off I went.
Time went on, I got married had a baby… and another. After my second child I would get these dizzy spells where I would almost pass out, but never actually did. It concerned me so I went to my cardiologist and they gave me a heart monitor to wear for a week. This wasn’t alarming to me, I’ve worn plenty of heart monitors in my days growing up due to the 1st-degree heart block. I was still a smoker but besides that and these random dizzy spells, I really didn’t have any health issues. I’m the type of person that’s always moving, always doing something, sitting is for nighttime when the days’ work is done. I wish at this time I knew what I know now about diet and lifestyle, but I didn’t, so here’s what happened.
I remember an afternoon when I was wearing this monitor spent cherry picking with my two young boys, I felt good for the most part except I had a little cold, so I took some over the counter medication with Sudafed in it. After our outing, I got a phone call from my doctor that my heart was going into 3rd-degree heart block, and that I needed a pacemaker. I didn’t get it, I was out cherry picking, felt fine, and then this phone call floored me away. There’s a lot of ignorance, on my end, that plays a part in these beginning stages of this whole situation. First, I didn’t really understand what 3rd-degree heart block was, but I knew it scared me. I knew I didn’t really want a pacemaker, but I also knew I didn’t want to not have one in case my heart did… stop…is that what this was? Needless to say, I was scared. I told the doctor I had a cold, and that I always felt heart flutters when I wasn’t feeling my best. She said I needed to go to the emergency room where I could be monitored. So, I went and was told my heart rate was between 180-195 when I got there. Naturally, the team of nurses were monitoring me for a fast heart rate, and I thought I was there for 3rd-degree heart block. I was so confused. I think everyone was. In light of the situation, it turns out my body and Sudafed don’t go well together. The fast heart rate was a fluke, however, I still didn’t know why the doctor that called me earlier that day said I needed a pacemaker, especially since now, at this point I’m being discharged from an overnight stay at the hospital with them saying I did not need a pacemaker, but I was allergic to Sudafed.
Needless to say, I went to get another opinion, I went to my appointment, and I remember being really annoyed at the doctor. He was over an hour late and took a cell phone call during our appointment. I am a very forgiving person when it comes to these things, always seeking out the best in people. I figured he was held up with patients or dealing with an emergency. He stepped out into the hallway and I could hear him laughing, so it wasn’t an emergency. Its ok, I thought, we all have personal lives that also need to be attended to. I wanted to be rude when he came back in but to be honest, that behavior is rare in my nature, it would have to be a really bad day. So, on with the appointment. He didn’t specify if I needed a pacemaker or not, he also hasn’t gone over my monitor report from the previous doctor yet. I remember him asking me about my diet and then he said he wanted to do more tests. He mentioned that I have something called “near syncope”. Apparently, my heart block was going into 3rd degree, that’s not benign anymore. Either way, I left the office that day without a sense of urgency. Actually, on my discharge papers, he wrote “giddy” as a diagnosis. I tend to laugh when I’m nervous. His attempt at humor put him back in my good graces.
I was on the beach hanging out with my family in July of 2015 and got a call from the doctor. I wasn’t expecting one, but he called to see when I was going to follow up and do more tests. I thought to myself at the time, well if he’s that concerned maybe I should be too. So, I made an appointment for a test he suggested and a few weeks later I was at the hospital for my prep. There was a lot of conversation going on in the room between the dr, nurses and my family. A lot of terms being thrown around that honestly, I didn’t know what they meant. Apparently, the conversation was if I should get the test done, or just get the pacemaker put in that day. The test was invasive and apparently had some scary risks. I don’t remember the name of it, but the concept was for them to manipulate my heart beat to see how the electric part of my heart responded…or in my case, didn’t respond. I remember the dr saying that I was going to most likely end up with the pacemaker one day anyway, whether it be today, a few months or a few years from that moment. Fear truly immobilizes you. I was scared to get the test, I was scared to get the pacemaker and I think my feeling at the time was, well I might as well just get the pacemaker now so I can be done with doctors’ visits, tests, and all this fear. Oh, if I only knew what was coming for me…
I remember the atmosphere when they brought me into the surgery room. It was light, happy even. Everyone was joking around, there was a common goal and everyone was playing their part. The nurse looked into my face as the anesthesia hit and all I can remember is her blonde hair fading away. Waking up from my pacemaker insertion surgery is such a daunting memory. The pain I felt is indescribable, I couldn’t breathe, a breath in felt like knives slowly slicing through me. It was so painful. Plus, being mentally cloudy from the anesthesia. I was in a dark place. I just wanted to know what was wrong with me, was I supposed to feel this way? Is this what having a pacemaker feels like? I could barely talk it hurt so bad.
They told me it was Pleurisy. It’s a side effect of surgery sometimes from air getting into the lungs. I had no choice but to believe them, why would they lie, or not tell me what else it might be. They sent me home with a bottle of Motrin.
I know now that that day in the hospital was such a significant part of this entire story. Decisions that can change our lives, and at the time, we don’t even know the impact a simple yes or no could have. At the beginning of my healing process, I would look back at this day and be so angry that I decided to get the pacemaker and not just do the test. I wanted to turn back time so bad. I was consumed with regret. As I started to heal physically and mentally, it occurred to me that maybe I did make the better decision. What if I got the test and something worse happened? I left the hospital with the wrong diagnosis. I found out later that I had Pericarditis, not Pleurisy. Another regret, why didn’t I speak up, demand to have them figure out what was wrong with me? My intuition knew there was something wrong, but at the time I didn’t trust it enough to follow through. This turned out to be a lesson. I never not speak my truth anymore, especially in a doctor’s office or hospital setting. Now, I trust my intuition more than anything. There’s always growth after a storm, sometimes the road to find it is long and dark, but it’s there.
I will continue with my story but for now, I’m going to stop here. It’s a lot to relive and a lot to read. Thanks for stopping by and allowing me to share this story with you. Sign up for emails so you won’t miss the next post!