Cardiac Failure

Two years ago today I had open heart surgery. The surgery has impacted nearly every single aspect of our lives. Our lives today have very little semblance to our lives of two or three years ago.

Why am I telling you about this? I’m putting this out there for future hikers and adventure seekers that have cardiac conditions and are doing a bit of research.

When I tried researching PCT thru-hiking and heart conditions I didn’t find any information. I suspect this is tied to the age demographics of those who actually thru-hike the PCT versus the age demographics of folks with heart conditions.

Let’s state this up front though, I’m not a doctor. I have zero medical training. You should seek medical advice for any questions or concerns you may have. Don’t sue us if you head out and do something foolish after reading our blog!

Three or three and a half years ago I began having what I thought were panic attacks, minus the panic. Work was crazy stressful and our volunteer lives were crazy stressful. I recall an awareness of my heart racing on several occasions. It was weird, but it went away after a bit. No worries, right?

We went snowshoeing in early January 2016.

I recall being very tired during the outing, but it passed. A week or two later I went to an urgent care doctor on a Friday for a physical before I began preparing to run a marathon. All hell broke loose. An electrocardiogram showed an irregular heartbeat.

I think I was pretty chill but the urgent care doctor’s staff were freaking out. “Don’t hesitate to call 911” between now and Monday when you visit a cardiologist. (Gee, thanks.) Anyway, I ended up in a cardiologist office and they were much more relaxed about my irregular heartbeat. They see it every day.

I learned that my irregular heartbeat is called atrial fibrillation (AFib). I’ll allow the good folks at the American Heart Association to explain AFib.

Over the next year or so I had six or seven electrical cardiac conversions. I became great friends with the folks at Southwest Washington’s PeaceHealth Cardio and Vascular center. (Is it really that good to be on a first name basis with everyone in the doctors office and cardiac surgical center?)

A cardioversion is a procedure where a very small electrical current is applied to the heart to return the heart to a normal sinus rhythm.

The electrical cardioversions didn’t “stick” and my heart continued to return to an irregular heartbeat. The longer I stayed in AFib the worse I felt. I was very tired. In my case the AFIb was pretty much all the time, 7 X 24.

When the heart isn’t beating properly blood can pool in the hearts left atrial appendage. The blood hangs out in the left atrial appendage and then clots. The clots may exit the heart, lodge in the brain and cause a stroke. I wasn’t a big risk for a heart attack, but my risk for a stroke was very high.

The cardiologist prescribed more and more aggressive medications to attempt a chemical cardiac conversion. No dice.

I had a cryoablation surgery. The surgery was an initial success but I returned to AFib shortly. Months passed while we hoped for an improvement.

I had a radiofrequency ablation about a year later. Same results as the cryoablation.

I was referred from my cardiologist to a local cardiac surgeon for specialized surgery. Noelle and I interviewed the cardiac surgeon. It was not a good fit.

The cardiac surgeon complained about long term Afib patients having too much knowledge and being a pain in ass with so many detailed questions. When I inquired about his patient loss percentage during/after surgery he told us that he could “give a shit” if we let him perform the surgery, his pay would be the same. Well, uh, no thanks…we continued our search.

Ultimately we found a surgeon in St. Louis Missouri at Barnes-Jewish Hospital that answered our questions and invited our feedback. Vetting a surgeon is tricky though. I’m not a doctor, what do I know? As it turns out, with a little common sense and a bit of research, it is quite possible to make an educated and informed surgical decision.

I spent a massive amount of time speaking with the surgeon’s head nurse during the decision making process. Most, if not all, of my questions were answered before I actually met the surgeon.

After making a decision to proceed with surgery I worked to get my affairs in order. I suppose it was the usual stuff; leave of absence from my job, an updated will, advance directive, power of attorney, password lists, account lists, etc.

I wrote letters to each of our children and a letter to Noelle to be opened in the event of my death. This was the absolute most difficult part of my surgical preparation, but the most valuable.

We headed for Missouri and were lucky enough to meet up with our friends Bob, Laurie and Fr. Fred the night before I checked into the hospital.

We hung out with them, ate dinner, drank a few beers and relaxed just a little.

The next day I checked into the hospital. Our friends Jack and MaryCarol traveled to the hospital from Oklahoma to be with us for a few days around the surgery.

Our daughter Tayler joined us for the party too!

It was so good to be around friends and family where I could just be real. Over time, as the Afib had become worse and worse, I really withdrew from friends and family. Everyone wanted me to feel better and to act better. It was hard to disappoint everyone with the truth; I just felt horrible. Each night when I went to bed I’d wonder if I’d wake up the next day. (Buzzkill huh?) It was far easier to just isolate.

The surgery itself was difficult. It was not pleasant.

I was in the cardiac unit for 13.5 days. This is a very long time to be in a hospital. A. Very. Long. Time. Lots of time to think and ponder.

When I exited the hospital I had a plethura of new scars and an unexpected pacemaker in my chest. I had many different mental scenarios on what it would be like to leave the hospital, but not one of them included a pacemaker!

We spent another two weeks residing at a local hotel so that I remained close to the cardiac surgeon “just in case of trouble”.

I was off work for three months. I attended both cardiac physical rehab and cardiac lectures (diet, stress management, etc) three times a week.

After three months the cardiac rehab folks set me free. I’m forever grateful to the awesome folks at PeaceHealth Cardiac Rehab.

I observed my fellow rehab patients very carefully. Some (my judgement) were going through the motions but not really making an effort. To me, cardiac rehab was a second chance. I worked my ass off. If I could have continued my rehab for another three months I would have signed up in a heartbeat.

I believe that my cardiac rehab gave me confidence that my heart worked. I wasn’t going to die if I ran on a treadmill or worked out aggressively.

So. Here we are in the present. Two years later. We sold our house, sold two of three cars, put all our stuff in storage and we’re hiking the PCT. Crazy, crazy, crazy.

I’m not going to say something trite like “If I can do it, you can do it.” Truthfully, I don’t know if I can actually finish this trail in one thru-hike attempt, but I’m doing my absolute best.

I spoke with my general practitioner, cardiologist and cardiac surgeon about hiking the PCT. If any of the three had advised against the hike I would have not hiked this year. All three physicians gave their blessings and advised me to stay hydrated. I do carry extra water. (I actually wanted to hike to Everest Basecamp and was concerned about how my heart would react to the elevation. My cardiologist suggested trying something “local” first.)

I’ve been in contact with my general practitioner, cardiologist and cardiac surgeon while I’m out here on the trail. (My GP is a hiker! How awesome is that?!?)

The past two years have been a blizzard of emotions; joy, sorrow, grief, bliss, happiness, loneliness, anger and acceptance. I’m not the same person I was two years ago. Time will tell if I’m a better person. I hope so. I just want my children and wife to be proud of me and love me.

I think the whole surgery/heart stuff is one of the least interesting things about me. I rarely share it on the trail. I’m sharing this with the hope that it will encourage a future adventurer that it’s possible to live life “outside the box”, even when faced with serious health challenges.

You, the future adventurer, determine what “outside the box” means to you.

Thanks to you for joining us on this leg of our adventure.

26 thoughts on “Cardiac Failure

  1. CAROL KRAJEWSKI August 30, 2019 — 6:22 am

    You are an inspiration Steve … thanks for sharing. Love to you both from Paul & Carol <3

    1. Hi Guys! Sorry for the slow response, I’ve been hiking in a very remote area in Northern Washington. You guys inspire us! We love you tremendously!

  2. Thank you for sharing this story. It rings clear to any of us with medical issues or just getting older. I’m thankful you are vibrant and inspiring us all. Hugs big Steve.

    1. Big hugs to you! I’m so happy you’re following our quest…or our descent into madness!

  3. I thank you for this particular sharing. I too have Afib. This particular post is very inspiring. I’m not saying I’m ready to take on any hikes or marathons. But it has given me food for thought on how I want to live my life day to day. ❤️

    1. Oops – signed Liz from Fresno Retro

      1. Yahoo! Grab the bull by the horns!

  4. Personally, I couldn’t be more proud of your journey! On the PCT trail, and over the last two years 💖
    Love

  5. Steve,

    Wow, this back story makes your’s and Noelle’s trail story even more impressive!! Thank you for sharing.

    Red Teacup

    1. We are inspired by hikers like You! Thanks for all you do In your everyday life to make this world a better place.

  6. Danielle Collins August 30, 2019 — 7:01 am

    We are so beyond proud of you and inspired by you ❤️ Keep kicking ass! Love you!

  7. And writing like that is why you should 1) continuing the sometimes-fun adventure, and 2) write a book together! (Guy I used to work for self-published it turned out great).

    It was truly a pleasure to see you both yesterday. You are changed physically, but still the same. Acknowledging not-being-in-control-of-what-the-heck-happens…but definitely in control of your response, and managing to maintain enthusiasm even during the stressful times. Awesome!

    Gotta know…what is the story behind those pink and blue costumes you’re wearing in the picture with the Tokyo Skytree above? Was it Halloween?

  8. Dear ones,
    We think you are both amazing! Thank you for your compelling sharing ♡
    We love you guys so much!
    Bob and Laurie

    1. Love you too! (Somewhere we have a picture of the four of us in SA but I couldn’t find it.)

  9. I really loved this post, I’m a daily reader and I didn’t even know all of that, thanks for sharing steve, gives me more motivation for something. I don’t know what but it was very motivational.

    1. Thanks for following along Tony! I’m hopeful that it gives folks food for thought. Radical life changes are possible!

  10. Steve so amazing and powerful! Three years ago Bruce had open heart surgery. Four way by pass. His nurse practitioner notice something wasn’t right. He first was told he need stints and after 20 minutes they came out and said, Mrs. Huck it’s a lot worse. He did so well after surgery but man what a roller coaster. Someday I’ll tell you about the harp playing at the end of his bed!
    Keep trucking and Happy Labor Day! We’ll be in a yurt on the coast.

    Karen & Bruce

    1. Wow! Four way bypass?!? That seems pretty serious. I’m glad to hear that Bruce is ok…but oh so curious about the harps!

  11. Good for you! You are such an example of persistence, dedication and strength. Thank you for sharing your story, which is so encouraging to the rest of us.

    1. Thank you for following our journey! It’s odd to share something so personal, but I’m so very happy to hear that it was encouraging to you.

  12. I just wanted to say Hi. You may not remember me Steve, but I am Justin and Waico’s Mom. Your story is amazing and inspiring. If you find your self in the Owens Valley during your hike, Look me up.It would be a pleasure to see you both again.

    1. Hi! Thanks for your comment! Honestly our story (right now) doesn’t feel very amazing or inspiring…it just feels really, really difficult.
      We’re headed back to Northern California to hike south into the Sierra so we may be headed in your direction soon.

  13. Hi, I have psvt was rushed to the hospital with a heart rate of 238 had that scary shit that stops and restarts the heart,then after months of heart meds I decided the catheter ablation was better than the meds…and I went for it…very scary no family around but my kids and coworkers…but it worked…for a little while…long story short I’m having some issues again but nothing like before. Although now I have high blood pressure 🥴anyway you going through all you did and not giving up hope and even hiking…wow! It’s awesome! My cardiologist told me “it’s more of an inconvenience than anything” but he wasn’t the one feeling dizzy and not able to breathe and shaking….so may not be a big deal to specialty doctors but it sure is freaking scary! Kudos to you for going the distance!

    1. Hi Robin-I’m sorry to hear of your heart woes. I think my primary cardiologist would say something like that, “inconvenience”, in reference to something that wasn’t going to be fatal. Only after many, many conversations did we start to discuss quality of life. I made the decision to move forward with the aggressive surgery to try to eliminate the inconveniences. Time will tell how successful the surgery was when viewed from a decade (or two or three decade) perspective. In the meantime, I’m going to do a little more hiking and try to worry a little bit less.

      Thanks for following our journey!

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