Problems are not the problem; coping is the problem. ~ Virginia Satir
All the background at one time. You’ll probably read about it again.
My heart failure diagnosis isn’t new. It’s been 3.5 years. It’s been a wild ride and a solitary journey.
It all started with me getting in the best shape of my life. Not just my adult life, my whole life. COVID came, lockdown happened and I turned to my garage gym and nutrition. My macros were on point. I could do a 200lb dead lift – for the first time ever. I could do a pull-up. Not just one pull-up, but multiple pull-ups. I was dedicated. I was soooo focused and then… It started with some exertional chest pain while walking the dogs. Every morning I’d get 10 minutes into the walk and chest pain would make me stop. But in a minute or two it would pass and I was good to go. That was annoying, but it didn’t stop me from finishing the walk, returning home, and getting some strength work in and tackling a HIIT workout. I gave it a week and then thought I should get it checked out. I just thought it was weird, not really a problem.
This is what Left Branch Bundle Block looks like on an EKG
Whelp, it turned out it was a problem. It started with a diagnosis of Left Branch Bundle Block. They gave me a name for it, but gave me no more details. However, Google was able to provide so many more details. And my dad had not too long ago had a total heart block (cardiac arrest, ICD placement and he’s as fine as he wants to be). I didn’t know they were not the same thing. That was the beginning of fear, wait I mean FEAR. There were specialist to see and tests to be done. Don’t forget we were all still reeling from COVID. Appts were hard to get. I took what was offered. I did land with a Cardiologist I credit with getting the ball rolling and I am very thankful for that.
I started my first medication and then my first test was a chemical stress test. 0/10 – do not recommend. I hated it. I failed it. The doctor called me before I got in my front door. I lived 10 minutes from the hospital. My ejection fraction was 9% (that is not so good. Google was not my friend.) This is where the diagnosis of Left Sided Heart Failure and Cardiomyopathy entered the conversation. Next up was a LifeVest™ (a personal defibrillator that you wear because you are at risk for sudden cardiac arrest) that wasn’t worrisome at all. Next on the agenda was an angiogram. Passed the angiogram with flying colors. Nothing to see there, but also no answers provided. Other medications were added and cardiac rehab was prescribed.
Bad news. But it’s so pretty.
I ended up being a cardiac rehab drop out. I didn’t fit their program. They were prepared to deal with those recovering from heart attacks or cardiac arrest. It seemed I was an anomaly. Which added to the feeling of being alone.
I had weekly appointments at the heart failure clinic (that’s a horrible name). There were lessons each week that didn’t quite apply to me. “Change your diet”, but don’t really do that because my diet is fine. “Limit your fluid intake”, but don’t really do that because I don’t have an issue with that. Oh…”salt is a no go”, but not really because I have low blood pressure. Each appt felt like I was the exception to the rule – I was the only one.
Then came the Heart Transplant Doctor. He was amazing. He started from the beginning helping me understand I don’t fit the mold and that that was good. That looking at my tests and scans and numbers told him one story, but looking at me in person told him a different story. He tweaked my meds. He ordered an exercise stress test (because if I died in their clinic it would be okay, they could resuscitate me – nothing to worry about there). I passed that test. I exceeded his expectations. All my other numbers were still sucky and I still needed to see a Heart Transplant Doctor, but I had my first good news. And nothing changed. Except my meds. My meds changed and I finally got to therapeutic doses.
Then at 6 months post diagnosis my echo showed improvement. Which meant no ICD or defibrillator for me. The improvement continued. My Heart Transplant Doctor fired me because I no longer need that level of care. But he was the only doctor I have had who took the time to answer the questions. Today I am stable with meds. You would think I would celebrate that. I do know it is awesome. It is great. It is amazing. But… I don’t know how I got here and I worry when (because they say it will happen) I’ll deteriorate. And every pain or shortness of breath causes me worry. Which causes my world to shrink a little and that is not the place I want to be.
I’m thinking I’ll use this space to process how to LIVE life with heart failure and not just exist with it. I’ll talk about the hard things I am choosing to do and the hard things that chose me. I’ll share my successes and failures. I guess I mean I’ll just share my life.
A Heart for Hard Things 