My heart of hearts

Noelle here:

We’re coming in on the two year anniversary of Steve’s open heart surgery, as I write this. He’s so skinny now that I tease him about his pacemaker popping right out of his skin soon! I’m so thankful to be able to joke with him. I’m simply thankful to still get to be sharing life together.

It was a rough road to finally get to the Cox Maze Procedure. Full of cardio versions. At first I didn’t really know what that meant, so I would jokingly ask his cardiologist could I press the button. Then one time Steve had to get it done in the ER rather than in the peaceful outpatient setting. That’s when I realized what a cardio version really is. It means they shocked the shit out of him to make his heart beat right. I’ll probably never unhear the sound Steve made when the first shock woke him from prophenyol. Then they shocked him again. They said he wouldn’t remember it but he did. I still do.

Somewhere in there, they did a few ablations. Hmm. Boiling water and electrical burning, why yes, please, we’ll have some of that. They call it cath procedures like that doesn’t mean heart surgery. Umm, you’re working inside my husband’s heart. I’m qualifying that as surgery. 🤔

The conversions and ablations would work for a couple days to a couple weeks. Then our hopes would be dashed, as usually Steve’s heart would radically pound out of sync in the middle of the night, waking him from a sound sleep.

Our emotions were up and down like a roller coaster. Hope to devastation, over and over.

Then there were all the medications. So insane. Let me chemically poison your body so that the AFIB will stop. Finally one worked, but it started shutting down kidneys and liver and completely messing up Steve’s thyroid. So stupid.

After more consultations, we decided to go to St. Louis for the Best of the Best, in cardiac surgeons, Dr. Damiano. He learned from the doctor who founded the Cox Maze procedure and he does a hundred or so each year. That means his staff and the hospital nursing staff are familiar with it too. We met with him and he thought Steve was a good candidate. We scheduled the surgery.

Steve prepared a will and advance directives and he wrote letters to me and the kids (thankfully they’re still in the safety deposit box, unread). Our youngest daughter flew out to join us for the surgery. I couldn’t have gone through it without her. Our dear friends drove over from Tulsa. I didn’t know it but Steve asked them to come, just in case. It’s so hard to think about that time of crazy uncertainty.

The surgeon said things had gone perfectly and he was excited for Steve to heal. Pain management was a big ordeal for a few days, but greatly improved once all the chest tubes and drains were removed. Then Tayler and I went with our friends to get dinner and ice cream. While we were gone, Steve’s room suddenly filled with doctors and nurses. He just thought he was sleepy, but really his heart was slowing way down. We got back to the hospital and he was feeling okay again. He had an external pacemaker as a standard temporary placement after surgery. His heart fully depended on it for a week. The nursing staff got used to hearing his alarm chiming loudly, pretty much non stop. One nurse, who we liked a lot (all of them adored Steve), flippantly told us she had told her boyfriend about us and that she hoped “he makes it through the night so I can work with them again tomorrow”. Then she realized what she said and we were all three very quiet.

The doc said Steve needed a pacemaker. We felt devastated, like the surgery must have failed. It didn’t though. It was just that surgery itself caused such tremendous trauma to his heart that he needed the pacemaker to guide him through the first few months. It kept his heart beating correctly till it healed enough to do the job itself. He hardly uses it now, but it’s a nice little insurance policy.

We live an amazing life now! We changed things up, even before this hike, in order to live more fully in the moment.

I’m thankful for our life together. Every single day. I’m grateful.

9 thoughts on “My heart of hearts

  1. CAROL KRAJEWSKI August 31, 2019 — 7:05 am

    We share a similar experience ….. except for the hiking part – lol LOVE YOU BOTH!!!

    1. It’s a crazy ride, isn’t it?! Love to you and Paul. N

  2. I am at a loss for words. Between Steve’s post and yours it’s brought a whole new level of inspiration and awe to your journey. Thank you both for sharing this very personal experience with us Godspeed.

    1. Thanks! Life’s journey is complicated, isn’t it. Glad you’re following along. N

  3. What wickmanslostin American said!!! I always tell my students that the best history stories “walk” by us everyday and we don’t even know it! So glad I fatefully met you two on my journey. Thank you for having the courage to share your experiences, somebody up there needed to read this and with your permission I would like to share your story with a couple of people in my off-trail world.

    Red Teacup

    1. Red, thanks for your kind words. Feel free to share away! Hugs to you, Hiker! N

  4. There are really no words to express my feelings just ❤️💗❤️💗❤️

    Liz from Fresno Retro

    1. Love right back at ya, Liz ! N

  5. ❤️

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