Sometimes Life’s A Spinning Tea Cup

How do you feel about spinning rides? Well, I usually love them – the faster the better! But then I have to remember, I am not as young as I used to be.

While on Spring Break in Florida, we decided to visit the popular Disney Springs. They had a carousel and that is an experience Mazy continues to love. I told her I’d ride it with her, thinking she’d choose one of the beautiful horses. Nope, lo and behold, she chooses the spinning tea cup. I thought eh, no prob bob, I’ve got this!

I’ve heard that if you are spinning really fast, find an object, and stay focused on it. So I did what I thought I knew to do, and I was laser focused. But let me tell you, my world was spinning out of control and with 30 seconds left, I told Mazy I couldn’t spin anymore otherwise I’d never be able to get off the ride!

Does life ever feel like that for you? You are spinning and spinning, trying to stay focused on this one thing, but the faster you spin and the more difficult circumstances are thrown your way, the harder it is to stay focused?

This past month, I went through a slew of tests to try and determine the state of my heart. Many of these tests are expected to be done yearly when you have advanced heart failure, but I also knew that my heart wasn’t acting like it did a few months ago. Something was wrong.

While on Spring Break, we received the results of those tests and now granted, it wasn’t the doctor’s official word, but I could tell by the summary that something was different. I am currently on a medication to offset the extra beats my heart is producing. Before I went on the anti-arrhythmia med, my PVC burden (percentage of extra beats), was around 18%. That means about every 5th beat, my heart misfires. When I went on the med, I thought it was working, but over the past few months, things have felt different. Sure enough, even while on my anti-arrhythmia med, my PVC burden is still 18%. And not only that, I am having a bunch of different kinds of extra beats that I have not had before. Before, most of them were located in the lower chambers, where now, they are starting to creep into the upper chambers of my heart, along with tachycardia, which is a severe rhythm that can lead to a heart attack. Hence, why I have an ICD in my side – it acts like an AED, but it is in my body.

So now what? The solutions for my extra beats would be another med, an ablation, and worst case scenario, a transplant. Meds have proven to not work, as well as an ablation, but we are going to give one med that I’ve been on before, another shot. I’ve been on it twice – one time it worked, one time it did not. The tricky part is that at my age, you cannot be on it long term because it can cause organ damage. As for an ablation, I have so many extra beats, that it would be impossible to zap all of the spots. Also it would take 3 surgeons/doctors to perform it, which means waiting at least 3 months for that to happen IF they feel it’s even a good idea. But Kristin can’t wait that long. And then last resort, a heart transplant.

That is just my “electrophysiology” issues. Now my heart failure (they are two different things). My heart failure (decrease in the function of my heart) isn’t a whole lot worse than my last test, but I’m on medications that should be increasing my function, but there isn’t much of a change. And I’m starting to become fairly symptomatic, which is a sign of worsening heart failure. The fatigue, shortness of breath, fluid retention, loss of appetite, and low blood pressure, are all things I’ve been experiencing, and it has sounded the alarm for my heart failure team.

This week I had an appointment via Zoom with my HF team and the majority of the time we talked about what it would like if I were to have a heart transplant. If the anti-arrhythmia med doesn’t work, the doctors are going to start testing me for a transplant. In some ways I am there, in other ways I am not “quite” sick enough, but it’s a fine line. My other organs (kidneys and liver) are healthy at the moment, which is a requirement for a heart transplant, so they don’t want their functions to decrease. Yet some parts of my heart tests (as of 1 1/2 years ago) aren’t quite low enough, but they also don’t want those areas to get too low, to the point where I’m in the hospital all of the time either. I’m told that with my severity of heart failure, most patients are in the hospital frequently, and by God’s grace, I have bypassed the hospital for quite some time. Now are there times when I wonder if I should go in? Absolutely, but that’s when I message my HF team and I try and do what I can at home. I’m told I would be very successful with a transplant, but that is no easy feat. It is a very long process with so many details, medications, and therapy, that it is impossible to comprehend all at once.

Yet I’m learning I have to come to terms that it could be sooner than we may have thought. I am asked often how others can pray, and at this point, I don’t even know. I would love for the new med to work, but I also don’t want to be on a high dose of it where we have to worry about my other organs. I would love to just start all over with a new heart at times, but there is a lot of risk and it’s a LONG process, and am I ready for that? And that’s why I pray, Lord, your will be done because I don’t know. I haven’t known. All of this is so foreign, yet so familiar too. It’s been a long journey, and yet it sometimes feels like it’s just beginning.

As I spoke with my doctor, the tears came, as I explained how fighting every day for my health is so hard some days. Not that I want to give up, but it feels like I’m never doing enough because it’s just getting worse. She said the most calming words – “there is nothing more you can do.” Que the tears. I can do “all the things”, but my heart at this point, is going to continue to fail me. Sounds like a Bible verse, doesn’t it?

Psalm 73:26 – My flesh and my heart may fail but God is the strength of my heart and my portion forever.

But God. BUT GOD. I can’t find strength in myself or in my physical heart, but in HIM alone. As my doctor explained, my heart is pretty messed up (my own words), and we have tried all the things, for years, and nothing is working. It can be incredibly disheartening to ponder that too long, but now enters a new season for me. One filled with lessening my commitments, listening to my body all the more, and advocating for myself with my team at Michigan, by my side.

I am re-learning how to go on a walk. Before it was – how far could I go? Where now it’s how slow can I go and not feel I have to prove anything to myself. Right now life is about maintaining what I can, while we wait in eager anticipation for what’s to come, whatever it may be.

Life at the moment, can feel like it’s spinning out of control. I’m trying to stay focused on the ultimate goal – my Savior, especially during this Holy Week. And yet I feel like from every direction, I’m getting heart reports, talks of a transplant, and trying to decipher what is happening in my body. It feels like one of those tea cups, let me tell you. But the timing isn’t mine, but God’s. I read a book by Bob Goff on vacation last week and the last story was about a girl who had a heart transplant (what are the odds…I had no clue). Then on Sunday, the pastor was talking about spiritual heart transformation and how we all need to go through a spiritual heart transplant (again, “the word”). And on Monday, I had my virtual visit and it was about the idea of a transplant. I don’t believe in coincidences, but in God-cidences. And maybe I will never have a transplant, only God knows! But I can’t help but wonder, God, what are you preparing me for? What is God preparing you for, when you feel like God is allowing your life to spin and spin? Sometimes we can’t see it, sometimes we lose focus, but we all have to remember, that our heart and flesh may fail, but God is our strength and portion forever!

And for the record, I was able to get out of the tea cup on my own accord, but I will tell you this – Kristin isn’t as young as she once was…oh the things we do for our kids!