Category: Heart Failure

My heart. It failed.

A Harder Thing

~ Monica ~ Leave a comment

Never be afraid to trust an unknown future to a known God.” ~ Corrie ten Boom

In the past few years we’ve (we = my husband, Michael, and myself) have had our fair share of hard things to deal with. Some happened to us and I feel comfortable talking about those in this space.

  • His best friend tried to kill him.
  • My cervical spine disc replacement.
  • My heart failure.

Others impacted us, but we weren’t the main character and I don’t feel comfortable talking about those because they really aren’t my story to tell.

But for the past year the hardest thing we’ve had is Michael’s job loss. Which was definitely not our choice, but also choices could have been made that did not equal job loss. It’s complicated.

However… he has never had a chance to think about what he really wants to be when he grows up. He was in college when we got married. We had our first kiddo before he graduated. No regrets there, but it also meant that once he graduated there wasn’t any time to think about what he really wanted to do. He was able to find something he enjoyed, but he always had to balance it with what would support our growing family. A year ago he was “provided the opportunity” to think about what he wants to be when he grows up AS A GROWN UP – that’s pretty amazing. So he took it. I mean we took it.

And for me that is the complicated part. I 100% support him and this decision. He did ask me. I have had to continuously remind myself over the past year of this truth, because I 100% would have preferred the security of a job.

He has spent the last year working really hard to make something happen, but also taking some time to invest in himself. He’s put some tools in his toolbelt that provide him ways to reach out to others and help them live better lives, and there is the potential he could leverage that into income. (Any one feeling the need for spiritual direction?) He’s been able to focus time on some passion projects – his consulting business and children’s ministry. He did some contract work and we thought we’d found part of the answer to what the future might look like, but the contract work was with the government and that all has been a wee bit unstable lately.

We’ve spent the last year

  • trusting God
  • praying (probably not as much as we should have)
  • discussing (also probably not as much as we should have)
  • having fun
  • waiting

And the time has come. The job search is beginning in earnest. We are not at the point of desperation, the point of any job will do. We are at the point of the search needs to look different than it has so that we don’t get to the point of desperation. We’ve been here before. It’s how we ended up in Thailand. I do not feel like we are at the point of me applying for jobs for Michael. Or at the point of moving countries (not saying we wouldn’t do it). But we are at the point of something needs to happen. I know it and Michael knows it.

And now I have to do the harder thing. Trust. Trust Michael to do what needs to be done. But even more than that is the Trust God part.

Adap-toe-ble

~ Monica ~ Leave a comment

If I do have a strength, it probably is adaptability. ~ Monty Williams

Accidentally kicked a door and now I’m negotiating my first unplanned training adaptation. Wasn’t going to go to the Dr because what do they do for an injured toe? But the limp I have started causing discomfort up my leg and I thought it best to know what I was dealing with – a break, a jam, a sprain, just some swelling – and how best to recover without causing other issues.

I managed to get a same day appt and then a quick trip to radiology for an X-ray. All to end up with a very unsatisfactory answer. They don’t see a break, but the doctor doesn’t have confidence that the X-ray is reliable due to swelling. So I’m in a boot for 10 days. Then we’ll reassess. Best case scenario that will be enough time to allow it to heal or at least give evidence that it’s healing. We’re not gonna talk about any other scenario.

So no running for now. Thankfully I have other options for continuing to train – janky bike and c2 rower to the rescue – and I’m still a ways out from actual marathon training.

working out with myself 🤣

Adventuring

~ Monica ~ Leave a comment

Be careful going in search of adventure – it’s ridiculously easy to find. ~ William Least Heat-Moon

Two weekends. Two National Parks.

Last weekend my daughter and I headed to the Eastern Range of the Rocky Mountains to Montrose. We spent a day in the Black Canyon of the Gunnison National Park. Our original plan was to spend two days in the park. Day one on the south rim and day two on the north rim, but the north rim is currently closed. Lucky for us, Colorado isn’t lacking for beautiful places to see. So we spent day two driving the Million Dollar Highway and hiking in Ouray.

This weekend Michael and I headed to Estes Park for a visit to the YMCA of the Rockies. It’s nestled right up next to Rocky Mountain National Park. Honestly, the YMCA property had more to offer than we could see in a weekend, but we have a National Park Pass, so how could we not take a little hike there?

The first trip I opted to change my training plan and know that I would be okay. This weekend I chose to stick to my plan, knowing I wouldn’t want to. I’d be tired and it wouldn’t be convenient. And I think it was the right call for both.

On the trip with my daughter we came up with my next plan. My what to do after the marathon plan. We’re gonna take on an epic backpacking trip through the Maroon Bells Four Loop Pass. We’ll do it sometime around August of 2026. I’m gonna have to work hard to not get distracted planning for that adventure while I’m trying to stay focused on my marathon adventure.

Balance

~ Monica ~ Leave a comment

I do find that there’s a fine balance between preparation and seeing what happens naturally. ~ Timothee Chalamet

I’m a rule follower. And I’m in the early days of marathon training. And I have crafted a very bespoke PLAN. And I have some already scheduled and some not so scheduled things interfering with my PLAN. It has been stressing me out. A lot. Not being able to get my 2.25 mile run in because a 10k hike got in the way had me worried that I’d ruined my marathon. But then I took a moment to think on it. And I realized a 10k hike was probably an okay substitute for a 2.25 mile run.

It has me thinking I cannot spend the next 7.5 months so attached to my PLAN that i miss out on important things. But… I also have to know there are important things I might miss out on because of my PLAN. It’s a balance. It’s a struggle. Maybe it’s #luxuriouslyhard

Putting the Plan in Place

~ Monica ~ 1 Comment

Our goals can only be reached through a vehicle of a plan, in which we must fervently believe, and upon which we must vigorously act. There is no other route to success. ~ Pablo Picasso

I’ve spent some time – maybe, possibly, most definitely more than necessary – coming up with a training plan to get me through the next 34 weeks. Is it a perfect plan? Certainly not, but I’m confident it will get me across the finish line.

I’m starting out building my base mileage and getting in some strength training. I’m basically doing a 5k plan followed by a 10k plan and then pivoting to marathon training. Run/walk is gonna be my jam knowing that it’s gonna get hard #luxuriouslyhard

Week one is almost done.

Permission Granted

~ Monica ~ Leave a comment

Go forth a conqueror and win great victories. ~ Virgil

Cardiologist appointment today. The best one in a long time and the first time I haven’t felt rushed through an appt since I switched my care team. All my recent tests look good which is very reassuring so we’re gonna adjust meds to see if the medication change late last year contributed to my more recent symptoms. I feel very good about that.

I asked about running a marathon and we discussed my training plan and I got a big ol’ stamp of approval. So here I go – full steam ahead!

Promise or Threat?

~ Monica ~ Leave a comment

“When did the future switch from being a promise to being a threat?” ~ Chuck Palahniuk

I know Jesus. I believe in eternal life. Heaven? Can’t wait to be there. It is going to be amazing – one day. In the future. It’s an amazing promise, but suddenly it felt like a threat.

One of the first things I remember hearing in the cardiologist’s office when receiving my diagnosis of heart failure was that I had a 50% greater chance of dying than I did prior to this diagnosis. I did later learn that there was truth in that statement, but there were nuances that could have made it much less scary.

I went about life with this new found knowledge and if that knowledge wasn’t enough I was wearing a LifeVest which was a constant reminder that death was imminent. I went on. It looked like I was keeping it together, except I wasn’t. I went to bed every night worried Michael would wake up in the morning to a cold dead wife beside him in bed. I went into work thinking how unfair it was of me to be putting people at risk of discovering me dead in my cubical. I kept my eyes out for the AED’s in any building and when the were suddenly missing at work I had a little panic.

I did know that death could happen at any time. Before my diagnosis I was well aware that I could have died in my sleep, died in my cubicle, been hit by a school bus, struck by lightening, you get the idea. But… death was abstract. It was out there, somewhere, and way in the future. It was easy to think about or rather not think about.

I wasn’t ready for death. I felt good. I wasn’t suffering. I was still working out. I had a step goal. I didn’t miss one day of work due to symptoms. It was years into this journey before I spent the night in a hospital (heart failure + dehydration from norovirus = no bueno). I believe that I will go to sleep in death and wake up with Jesus and the feeling I get from others is that should be super comforting, it should totally allay my fears.

But this fear it wasn’t allayed. It is no longer a clear and present danger, but it is still there – lingering on the edge. My heart is stable. The meds are doing their job. But I don’t know how this happened. So I don’t know how to stop it from happening again. And I’m not ready to die. I mean, salvation wise, I’m good, but actually dying… not so much.

Coping?

~ Monica ~ Leave a comment

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.