I am so thankful to say that we are taking steps FORWARD and for once, haven’t gone backwards! I would say I am stable, which is such a good feeling to say! Here’s what has all occurred.
I had a right heart cath on Thursday, where they go through the neck to check the pressures of the heart. My cardiac index was 2.05, which is JUST in the normal range. Anything below 2, they start to look at other things and the possibility of a transplant (along with a slew of other things). I just snuck by that one. My ECHO showed that my ejection fraction is unchanged (is still between 25-30%, where normal is 55-70), but I’ll take unchanged versus worse. And the oxygen test showed that I JUST sneak in, in the normal range once again. I had an inkling that those tests were to see where I was on the transplant spectrum, but I’m relieved to say that I won’t be put on the list yet, but it’s not off the radar. At least it’s not in the picture at this point.
As for a device. That is on hold, since the new med I am on seems to be working, in the sense that I am having fewer PVCs (extra beats). So, to give this new med more time to work, I will have another holter monitor and ECHO in 8 weeks to see if my ejection fraction has increased, and to see what my PVC burden is (how many extra beats I’m having). After hearing the results of my last holter monitor, I realized that there sure was solid evidence to explain why I wasn’t feeling well! At one point, during one PVC episode, my heart was beating 289 beats per minute! No wonder I was so tired and wiped out! Yikaroos!
Then the following week after I have the holter monitor, I will meet with my cardiologist to talk heart failure symptoms. Then 2ish weeks later, meet with the electrophysiologist to discuss the other parts of my heart issues. If this all confuses you, I’ll put it this way – heart failure team helps me get through the day to day of having heart failure, while EP deals with all the electrical issues and devices.
They have cut in half, two of my meds, in hopes that I become less symptomatic. I’ve been pretty nauseous and had a significantly decreased appetite, yet still gaining weight, but they think it’s medication related, not heart failure related. Then they also put me on a different diuretic, in hopes that can help me pass fluid more efficiently.
As the doctor said, all of this is an experiment. God keeps opening their eyes to different things, my body keeps responding in strange ways to medications, and so before they jump in and put something in permanently, they want to try every med combination they can (within reason), to see if it makes a difference and that usually means waiting awhile, to give it ample time TO work. So that means wearing the LifeVest for a few more months…oye. But if that means I can maybe bypass having an ICD (internal defibrillator) put in, I’m game!
It was a lot to take in, and I’m sure this is all quite confusing and that I’m forgetting details, but nevertheless, we left there knowing that round of tests and appointments are done and on to the next ones in December. Until then, we will enjoy each day as it comes. I am thankful that no transplant is needed yet, as much as I want my heart to just be okay, but that can open up a whole new can of issues. PLUS, I don’t think Mazy could handle me being gone for weeks recovering, and God knows that. This all isn’t easy for Dan and Mazy, as they walk this journey with me! They experience the ups and downs of this just as much as I do!
So here’s to hopefully an “uneventful” next 8 weeks! A day at a time…a day at a time…
Thank you for your prayers and encouraging words! Walking the road of heart failure is not easy, but each day I’m not in the hospital, is a good day in my book!