It’s the little things in life, right? Today, while at my hospital follow-up visit, I received a 3 lead holter monitor that will detect how many PVCs I am having and if they are coming from different places on the heart. If you remember, the goal was to get a 12-lead, but due to a massive shortage of those type of monitors, we had to settle for a 3 lead, which means 3 little electrodes detecting beats. Our hope is that as they compare this reading to my last one in May, that it will either show that my PVC count has increased or decreased. As Dan asked the physician’s assistant today what to pray for, really, there is no “perfect” answer. If you recall, I have a few problems – low ejection fraction, high number of pvcs, low blood pressure, and high heart rate.
The ideal situation? That my body would respond to the meds that I am taking, and as a result, the number of PVCs would decrease, therefore causing my ejection fraction to go up. But, as of now, my body has not tolerated the med changes well and my blood pressure has been low – so low that it has caused some brain fog because not enough blood is getting to my brain. (I’ve wondered why I’ve been confused!) They would like to try and tweak one more med, but there is a whole lotta fear that it’ll send my blood pressure really low, but unfortunately the only way to know, is to try. They are still hemming and hawing over that one, which I’m okay with. Truly.
One thing I have learned over the past 3-6 months is that heart failure is incredibly intricate. One little tweak can throw the whole body off – not only the heart. When you are dealing with an organ that supplies blood to your whole body, including other organs, and it’s not working correctly, I’m realizing too many changes can throw the whole body into a whirlwind.
So why is it taking so long to find a fix? Because in my case, there truly is no “easy” fix. If there was, if this was a textbook scenario, I would’ve had something done months ago. Fortunately with a mitral valve issue, there is a level it gets to and once it surpasses that, well, you repair or replace it. With electrical issues and a low pumping rate, with a high heart rate, there is just no one easy fix. The goal is medication therapy, where they work and rework meds to try and find the perfect combo, but that has yet to be found. So if it’s not working, what’s next you might ask? Well, a test with a holter monitor to see where the extra beats are and how many – then they can possibly do an ablation to blast them. If they are too many in number, then they might try another anti-arrhythmia med. Though as you can tell, my body doesn’t always adjust well to meds. So…
Are we left hanging? Not at all! Is it slow? Absolutely! It is just like any other disease – it takes time to see if treatments work. And if they don’t, you try another treatment. The PA I met with (she’s AMAZING), spent almost an hour with us, discussing what all of this means (which I wish I could reiterate our whole conversation), but heart failure is something I will never “recover” from, outside of a miracle. Is that a hard pill to swallow? Sometimes, but their goal is to ensure I live a long LONG life, to minimize the symptoms of heart failure.
And after expressing our concern about not being able to live my daily life with all my symptoms as it is right now, what comfort she gave Dan and I, ensuring us that they are doing what they can, seeing how many body adjusts, and to just trust the process. As she explained my age, my symptoms, my heart history, and the mere fact that I have advanced heart failure, it’s not everyday that they have a 34 year old patient with all those issues. They indeed have other young patients so that’s not odd, but the combination of heart issues that I had and now have, is not a common combination. To know that outside hospitals send their patients to this outpatient heart failure clinic, because they are known for their expertise, just puts me in AWE of how God brought us to Michigan. And it all started when we lived in Minnesota and my cardiologist had a former colleague that moved to Michigan, and is now my cardiologist. To know that I am of concern to them, that I’m not just a number, which is easy to feel like in a big place, is incredibly reassuring. To hear that today, to hear how often they talk about “Kristin,” reassures me that they know that daily life is sometimes a struggle, but that they are trying to figure out what is best LONG term. They don’t just want to put a band-aid on something, but to try and alleviate the whole problem.
We left Michigan today humbled that God has us right where He wants us. Is it easy? Not at all. But I’ll tell ya this – it sure is a faith builder and a “throw up your hands” type situation. Outside of watching my salt intake and my fluid intake, there is not much I can do, but just entrust this heart of mine to our heavenly Father’s hands. And as each appointment goes by, with unexplained findings, it makes me look up to the amazing Maker of this heart, who holds every beat in HIS hands. Not the doctors. He has instilled in them incredible knowledge, but until He opens our eyes to what His will is, we will ALL be left wondering what the next step is. So that is why we pray, God, Your will be done!
After I wear this monitor for 48 hours, they will review the results, which take about a week to get back, and then we will go from there! Thanks for listening to my heart’s journal and thank you for the prayers and love! Couldn’t walk this journey without you all!
Side Note: If you want to read about my previous heart history and what has led me to this point in my life, check out my book “A Heartbeat of Grace!” You can click on the picture icon on the sidebar to the right or order it off Amazon!