In case you are curious as to what I’ve been up to since posting this post about my heart issues returning and my PCT dreams being crushed, I’ll give you an update.
Mayo Visits
I was in Minnesota last week so that I could go to Mayo. When I flew out I still wasn’t 100% sure if I’d actually being able to go to Mayo or not, because I found out a few weeks earlier that Mayo was not in network for my new insurance. This was a huge punch to the gut and did not do well for my already erratic emotional state. I don’t think I have ever been so stressed and frustrated as I have been the last few weeks dealing with insurance. After multiple painful phone calls between the Mayo Business Office, my doctors, and Cigna it finally got approved for me to go, because my doctor did a peer-to-peer review.
I was at Mayo on the 16th and 17th for various tests and appointments – CT scan, MRI, EKG, blood work, etc. – and had my cardiac ablation scheduled for the 20th.
My doctor called me on Saturday afternoon and told me that my MRI showed more scarring on my heart than it did before. She was concerned that I could have some issues with myocarditis and wanted me to do a few more tests and to meet with a specialist before doing another ablation.
It was clearly not what I wanted to hear and I broke down crying for about the 78th time this month.
Fortunately, my parents, siblings, niece, nephew, grandma, and grandpa were all home, so it was a wonderful distraction. I did some wedding dress shopping with the girls, walked aimlessly around Target with my sister, played with my niece and nephew, went to the Hutchinson brewery with the fam, celebrated my younger brother’s birthday, and had brunch with some of my high school girlfriends. It was the best weekend I could have hoped for.
I was scheduled to go back to Mayo on the 21st and 22nd for additional testing – blood work, an echocardiogram, and a PET scan. Because these tests were not included in the original request with Cigna I had to go through the insurance process all over again. I cannot even begin to describe how awful this experience was. The Mayo Business Office was calling Cigna on my behalf and heard from multiple people that it would “just be another 1-2 hours.” Then when calling back Cigna would say “you’ll find out in 72 hours.” I spent about 6 hours on the phone with Cigna and the Business Office. I think I was in tears 75% of the time during those calls. To make this worse I had to fast for the tests that I was waiting on approval for. I was tired, hungry, dehydrated, and cranky. It was the most disorganized thing I’ve ever been apart of.
A major shout out to the Mayo Business Office! I can’t imagine having to deal with that type of stuff every day. They really fought for me. In the end it finally got approved, because my doctor, once again, did a peer-to-peer review. Another shout out to my mom who had to deal with me while I cried and yelled at Cigna while fasting.
Because this process took longer than it should have I missed out on my blood work and echo, which turned out to not be a big deal. The PET scan was the most important test.
I was really worried that my testing would show that my heart was basically one giant piece of scar tissue and that I would need a heart transplant. I guess I’m just going to start preparing for the worse so that everything they tell me will be better than I expected? I received enough blows the last few weeks (years, even!) and I’m getting to the point where I can’t handle too many more.
Fortunately, my tests results didn’t come back with anything like that. I do have additional scarring and I also have some inflammation at the tip of my heart. The results weren’t really anything conclusive – it looks like I have myopericarditis? – but they also weren’t anything devastating.
Next Steps
My team of three amazing female doctors (side note: how great is it that I have a team of three female doctors?!) talked over my options. I still have inflammation at the tip of my heart, so it’s not safe for me to do an ablation yet as it would further irritate the heart muscle and could cause even more scarring. I’ll be going on an anti-arrhythmia medication (the same one I was on last spring) and two anti-inflammatory medications. In 6 months I’ll go back to Mayo for another PET scan and MRI to see how the scarring and inflammation have changed. If the inflammation has decreased my doctors and I can start talking about pursuing an ablation.
Until the anti-arrhythmia meds fully load into my system I have to stay away from rigorous exercise. In about 4 weeks I’ll do a stress test here in Denver to make sure that I can exercise properly. If I go into VT then I will have to go on an additional medication and continue to hold off on exercise.
Emotional & Physical State
I’ve pretty much been all over the place emotionally. One minute I’m laughing and the next minute I’m crying myself to sleep. It has not been easy. I try to be positive, but I can’t pretend to be happy about this situation. I shouldn’t be in this situation. I am frustrated and I am angry. Yes, I am grateful that my VT didn’t start up again while I was already on trail, but why couldn’t have started 6 months ago instead or, better yet, not at all? This large piece of my life was just taken away from me. The PCT wasn’t just a “trip” that got cancelled, it was something that I worked towards for years. I trained. I researched and bought gear. I put my career on hold. I made the timing of a 5-month hike fit in my life. I don’t know if I’ll have that opportunity again. Now I’m left with watching other people’s PCT experiences on Instagram while I walk three slow, flat, not-so-scenic miles around the neighborhood.
People tell me that I’m strong, but am I? I’m getting through this because I have to. I don’t really have a choice. I’d gladly be considered as “weak” and have a normal functioning heart.
I wish I was handling everything with a little more grace.
Fortunately, I feel fine physically. I am not supposed to do any rigorous exercise, so I’ve just been doing slow 3- or 4-mile walks and pilates videos (which I enjoy more than I anticipated). Getting outside has helped my attitude tremendously. The sun and fresh air are very healing.
Highlights
I sound really complain-y in the previous few paragraphs – can you blame me? – but not everything awful.
A huge highlight was Michael asking me to marry him. He calls and/or texts me everyday from trail and it always always brightens my day. The fact that he is out there hiking for both of us (along with flat Jenna) truly warms my heart. This situation is just as hard on him as it is on me. It doesn’t help that the PCT is crazy this year. It’s been snowing and raining in the desert and the Sierras are still buried in feet of snow!
If you don’t follow him on Instagram, you should – @grizzly_hikes. His pictures are stunning.
Wedding planning has been a fun distraction. I am really excited about my plan so far (as is Michael). Also, looking at wedding dresses online is my new go-to activity for when I’m bored.
A couple of other bonuses are that I got my part-time jobs back and that the person who is sub-leasing the house from Michael and I is one of my best friends, so now we just get to be roommates (again) for the summer. Shout-out to Katie!
I’ll also get to see my family more this summer, which makes me so happy.
Thursday Things
- Excited to try this grilled broccoli and radish salad.
- Since getting a library card and downloading the Libby app in January I have been flying through books – The Favorite Sister, We Were the Lucky Ones*, The Female Persuasion, The Death of Mrs. Westaway, The Tattooist of Aushwitz, The Woman in the Window*, A Simple Favor, One Day in December, An American Marriage, Nine Perfect Strangers, The Clockmaker’s Daughter, Circe, Where the Crawdads Sing*, and The Power. I’m currently reading There There. (*=my favorites)
- Are you watching Chernobyl? If you aren’t, please start.
- After constantly seeing all the ads I finally broke down and ordered a FabFitFun box. I’m such a sucker. Do you get them? Do you love them?
- Very excited for the new Lumineers album to come out.
Chicago had cows. St. Paul had Snoopy. Rochester had geese. There are still a few around. There are a lot of geese around Rochester, especially around Silver Lake.
Oohhhh ok. That makes sense. Thanks for this info!