The only natural place to start is at the beginning in 1991 when I was born. I was a perfectly happy and healthy baby girl with no indication that I would end up being labeled the medical nightmare of the family. I was always getting into things I shouldn’t, when I got sick I got really sick, and don’t get me started on the injuries. I became a frequent flier of the e.r. at a very young age and it never stopped.
At around 14 or so I noticed that something weird was going on with my heart. I took my dads stethoscope from his work bench and hid it in my room so that I could listen to my heart before going to bed every night as I had these episodes where it would beat erratically and then go back to normal. After a little while I mentioned it to my mom and her response was oh you’re fine it’s nothing and of course I can’t provoke or predict these episodes so she didn’t know any better.
Fast forward 10 years and I’m sitting in the doctors office getting a routine new patient workup. The doctor starts listening to my heart and immediately sits back and asks if I just felt something. I said yes that’s just something that happens every once in a while. He gave me a worried look and told me that’s not something that should happen. He ordered a two week heart monitor that I had to wear around the clock to see what was going on. That’s where everything started going downhill.
After the monitor came off and the results were read they were already diagnosing me with cardiac conditions with long names I couldn’t pronounce or spell and I thought they must have the wrong results I’m only 24, active, and I feel fine. A slew of tests later and I was first diagnosed with heart failure. I just stared at the doctor for a while in disbelief unable to think or speak. I left the office in tears thinking my life was over. Little did I know that I was still doing well at that point. At 45% heart function I was running obstacle course races, 5ks, working out daily, and didn’t feel restricted at all so they assumed it was caused by athletes heart and told me to chill out for a while and see if not working out so hard would help. It didn’t.
To try and control the arrhythmia that they saw on the heart monitor they started trying out different medications on me. It felt like a never ending loop of Goldilocks and the three bears. This one was too weak, this one was too strong, this one dropped my vitals so low I couldn’t walk 20 feet without passing out. I was hating every second of every day that I was their guinea pig. And then we found the one that was just right and it looked like things would start turning around. Once the medication was set we started looking at why this was happening. Family history wasn’t telling us much, the test results were too vague, and I fit several diagnoses but none of them were exactly the right fit.
Fast forward another year and I’m 25. It’s been a whole year of poking, prodding, and testing and I’m still floating around in the land of the medical mystery. I have a team of cardiologists and a team of electrophysiologists and neither of them have any clue what is going on with me. At this point I’m no longer feeling sorry for myself and feeling like my life is over I’m too busy being pissed off. Figure it out already.
During my last MRI they found a spot on my heart and now it was time for another petscan. The results came back that the spot was growing and my function was down to 42%. Time to make a move. They scheduled me for surgery to biopsy the spot on my heart and do an electrophysiology study to map out the electrical system. Unfortunately, my doctor had never done a biopsy on that side of the heart before and neither had anyone else in the entire hospital. Time to be a guinea pig again. The results were inconclusive and uneventful and I walked away with a pericardial effusion. Another name to add to my growing list of issues as I was sent back into the land of cardiac limbo.
Just after I turned 26 I had another petscan. The spot was even bigger and I was at 40% so I was handed off to a new doctor. Normally that wouldn’t be a problem except for the fact that my doctors had started to ghost me after results of the surgery came back and all I was given was a name and no explanation. So I did what any normal person would do and I googled his name. I don’t recommend this!! Next to a picture of a young and well put together doctor I see his list of specialties. Advanced heart failure, implants, and transplants. I immediately started to cry.
A few weeks later at my first appointment I was anxiously sitting in a freezing cold room waiting for the doctor to come in. He came in the room and after a very brief introduction got straight to the point. It can only be one of two things at this point and he’s determined to figure this out. One is the best case scenario with minimal intervention on everyone’s part and the other is a rare, untreatable, and unpredictable condition. We hoped for the best. He set me up with a bunch of tests to start looking around my body to see if we could rule out the nightmare.
A month later I was back in the office for a follow up and the whole energy in the room changed as soon as he walked in. He wasn’t happy, smiling, and positive today. He looked worried. My tests came back and I was down to 36% function and you guessed it the spot was bigger than ever. We were out of time to sit back and snoop around. There was no question about it anymore. I have cardiac sarcoidosis. He explained that my immune system is attacking my heart like it’s a foreign body and that the spot is most likely the source even though it was negative on the biopsy. I had gotten another heart monitor as part of the testing as well and my arrhythmia was starting to show more frequent and longer runs of dangerous rhythms. Another major blow.
Treatment started that afternoon. Eighteen pills a day to start and a shiny new pacemaker/defibrillator were on the menu. It was an all new low for me. I finally had a diagnosis, treatment plan, and I had more confidence in this one doctor than the two teams before him but this felt like a death sentence. If you google cardiac sarcoidosis you will get the worst possible scenario as the definition. Reason #5286 you should never google things.
He explained that the meds were going to kill my immune system and hopefully help my heart heal once we remove the stress of it being attacked but it would be brutal and listed the longest list of side effects I had ever heard. Great. Surgery to have the ICD put in was scheduled and the meds were starting to take effect. I had another follow up two weeks later to discuss my meds again and he was shocked when I told him I had never felt as good off of the meds as I do on them. I had more energy, I was happier, and I was able to create a more positive outlook on the situation than I ever had before. More shock and awe.
When surgery day finally rolled around I was ready to go. I had done my research online, asked every question I could think of, and had made peace with the fact that I would have a Frankenstein looking scar on my chest for the rest of my life. Everything went smoothly and I was discharged the next day.
At the time of writing this I am two weeks post op and couldn’t be happier with the results. My arrhythmia is down, my symptoms are down, and recovery is going well. I still have a month before my next scan to see if the meds are doing what they should be but we are crossing our fingers.
Throughout the last almost two years dealing with all of this I’ve learned so much but the thing that shocks me the most is how hard it is to find support, patient feedback, and information that doesn’t scream death sentence when it comes to cardiac. We understand that we all die at some point you don’t need to keep shoving it in our faces at every turn. There are different degrees and levels of every illness and they need to be treated as such. For now my googling days are over and I’m going to live my life the way I want to live it. Hopefully you enjoyed the tale of my journey and will continue to follow along as I forge my own trail and share what I’m learning.
Until next time, BionicBetty
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