Coming Home – Heart Journey Update

I’ve been discharged!

I can’t say I am leaving with many answers, which was what we were really praying for, but God chose to not make it very clear and it’s ultimately up to him. Hard to understand, but there’s a reason why I’m not in control and He is! So what was concluded?

I do not have any lung issues, at least that any of the tests have shown. So lung issues are ruled out. The ECHOs (ultrasounds of the heart) that I had have shown that my EF, though we thought increased, then decreased, really has stayed about the same, at around 25-30%. Which is still isn’t good (considered severe), but unchanged. I am having PVCs, but they don’t want to rush in and do an ablation without making sure other heart issues aren’t causing my symptoms. I had a holter monitor and we will receive the results of that in a few weeks.

I will say, I feel a lot better than I did a week ago. I’d love to feel perfect, but I have to remember I still have advanced heart failure. When you leave the hospital, you want to feel just fine, but that isn’t my reality and it hasn’t been for a couple of years now. So it’s all about keeping things in perspective!

The EVO2 test and right heart cath were similar to last year’s results. They didn’t look perfect, but they looked like they should with someone with heart failure. So when they initially told me the right heart cath looked perfectly fine, I forgot to see it through the lens of Kristin’s heart. The EVO2 did show some decline in the mitral valve, they learned. We were thinking it was okay, but after further studying, and comparing to other ECHOs of the past, in perspective, there is some decline.

I wasn’t sure what that meant, so she said last year it was a 5, now it’s an 8, and if you hit a 10, then there is reason for major concern. So not a huge concern, but she’d call it moderate right now. Considering it’s a fairly “new” valve, just gives them reason to test it further. They were hoping to do a TEE today (where they put a tube/camera down the throat to look at the heart), to see in greater detail what the valve looks like, but there weren’t any openings. They were thinking about keeping me over the weekend (insert sigh…), but they decided to send me home and then come back and do it as an outpatient procedure. Fine by me!

Thankfully before all of this happened, I had two appointments set up with both doctors in 2 weeks (last week of October), so those will be timely. Then we can see how life goes at home and then go from there.

No transplant yet. We are running out of options in managing my heart failure, but not giving in yet. In other words I’m close, but not yet.

They were maybe thinking my shortness of breath was related to anxiety, but thankfully it’s never been something I’ve struggled with and the only time I felt really short of breath was walking down the sidewalk and having to talk for long periods of time, which would have no reason to make me anxious. I think we ruled that one out, though a very legit thought. Something to keep an eye on!

So this past week, which it’s crazy to think it’s been a full week already, was really a week of ruling out “other” issues. We know my heart is failing. All of the tests showed scarring on my heart because I’ve had multiple surgeries and a mild heart attack awhile back. So we know the heart isn’t in great shape. We were of course hoping we would walk away with more concrete answers, but sometimes no answers, is an answer too. And I have to remember that.

Now we just pray that I can transition to life back home okay. That I can slowly work myself back into routine, without any further struggles. And Lord-willing, one day this will all become clear. And Lord-willing it’s not my valve, because that would be a whole different set of issues we didn’t see coming so soon, since it was supposed to last around 10 years. But it was just a finding that the doctors want to dig further into with the TEE, and hopefully it turns out okay. But, it would explain my symptoms.

Thank you for reminding us this past week, and the weeks and months before, and those to come, that we don’t walk this alone. I can’t thank you enough for all of the texts, emails, Facebook messages, and help back home that you have given our family. From helping with caring for Mazy, for checking in, for items brought to the house, for your friendship, prayers, and support. I can’t tell you how many times this past week, I’ve had the opportunity to tell my nurses, techs, NPs, and Drs. about the absolutely AMAZING support system we have back home. And that includes YOU. Every person makes up that comment that I’m able to say. What a gift it is because I know that is not always the case. So from the bottom of our hearts, our family says “THANK YOU.”

I know this is just another step in the journey and there will be MANY more, and more bumps in the road, but for now, thank you and I will continue to update as life goes on BACK HOME. (Insert emoji with hands in the air!)