By now you know I made a trip to Ohio for Christmas. Maybe you’ve seen my Instagram pictures depicting some of the adventures I’ve been on and if you haven’t, no biggie, I can forgive you because it’s a brand new year and a perfect time for clean slates and lots of forgiveness.
But on the off chance, you did see those updates and you started wondering why I was there, I can’t wait to finally share some (good) news for a change.
I hadn’t been home for Christmas since 2016. Two years doesn’t really seem like a long time but it actually felt like decades to me. I was craving home and family (and Chipotle, let’s be honest). My girl child had gone back a few months earlier and I simply missed her and my oldest son.
Since mid-year, I’d been in a battle with Alaska Heart Institute and the pediatric cardiologist who makes yearly visits to see adult CHD patients. It was some time around September when I went to my primary care doctor and inquired about all the medications I was taking, couldn’t some of them be doing damage to my kidneys or liver? When should those be checked? Insert Nikki being turned into a pincushion and we discovered that I was severely anemic and vitamin D deficient.
My PCP and I decided to go ahead with the iron infusions. In the meantime, I was reaching out to Nationwide Children’s Hospital to initiate them taking the lead on my heart. I think I gave AHI a fair chance and the response that I kept getting from them as to who would continue to follow me or whether or not my medications needed to be adjusted was lukewarm at best.
I booked my tickets home for the holidays and let NCH know in case they could get me in for a checkup and updated testing. I informed them that I’d be undergoing iron infusions and sent copies of every test my PCP had done. I even scheduled a long overdue gynecological visit, dental checkup, and my first mammogram. Shortly after finishing up my iron infusions, they reached out with appointment dates and times as well as a potential surgery date for a device change and upgrade.
Unfortunately, I needed to have a couple of teeth pulled and there wouldn’t be time to do that and heal before my trip home. So the device surgery is tabled until after I have the necessary dental work done.
So what did we learn today boys and girls?
The left and right ventricles of my heart are out of sync. Only the left ventricle is being paced so the right ventricle is doing its own thing, which is causing the Afib. In the top of my heart, the Atrium, the device lead isn’t in the best place to do its job. My heart is being paced 100% by my device but nothing is capturing in the Atrium (that’s bad, FYI). The right side of my heart has 31% EF (also bad) and the left side (where the second device lead is) has a 46% EF which is in the normal range.
This summer I will return home (Yuck. Ohio in the summer is my least favorite), and get a Bi-ventricular pacemaker with no ICD. It will add a third lead to the right ventricle to get both ventricles back in sync and the lead in the Atrium will be disconnected and a new one placed in a better position.
All of this sounds crazy, right?
Eh, a little I guess.
To keep the procedure as minimally invasive as possible, I’ll only have a partial sternotomy and the new leads will be placed on the outside of my heart. We were told placing them on the outside is just as effective and as durable as placing them on the inside of my heart, and it will be safer than having open heart surgery. The new device will go back in the same pocket the current one is in now, which is nice because I’ve become accustomed to having it where it is; further below the skin and under the muscle.
According to the team, knock on wood, with no complications, I’ll spend a night or two in the hospital and I should be able to fly back to Alaska about a week later.
I know some of my family has mildly freaked out that I wasn’t being seen by NCH to begin with. All I can say is sometimes you don’t know something won’t work out until you try it. If there’s any kind of emergency I will still go to Anchorage because it’s closer but their job will only be to get me stable enough to go to Ohio for the experts to take over.
Will this plan work for the rest of my life?
Good question. I have asked myself that a lot this last year. All I can say is it will work until it doesn’t. I’m learning in my old(er) age that you have to be willing to give things a chance and sometimes try new things. For now, this works for me. The family is back in Ohio so it’s far better than going to a state where I know no one for my cardiology care (like many people in my situation do). But I’m optimistic that this is the right plan.
Forget about the coulda, woulda, shouldas of life because they won’t help you in the right now part of life you’re in. All you can do is start where you are and go forward. Did you make a mistake? Fix it. Something didn’t work out the way you planned? Move on. Learn. Do Better. That’s how I’m choosing to look at this. I wasted a lot of time thinking about what I should’ve done from the start but even then, how do I know I wouldn’t be right where I am now? I don’t.
Is that all I did during Christmas and New Year’s?
Oh heck no! I visited with friends, spent every day I possibly could with my daughter, brought my oldest back to Alaska with me, visited my old LYS stomping ground and bought new yarn, and spent a ton of time with Heather, planning world domination of the blogging world (Not really. Okay, maybe. You know what, we’re not sure but we had a ton of fun) and I ate enough Chipotle to satiate me until Summer. You hear that Chipotle? I’ll be back!