Heart Journey Update

I know I’ve been a little quiet over here on the blog, but I hope to change that over the next few weeks and as summer hits! Like for so many, life hasn’t gone the way we had planned, but it doesn’t mean God isn’t in control; nor is He surprised by any of it!

Two weekends ago we tackled the big project of re-roofing our house with a whole lot of help! So thankful to those who helped and so thankful to have that project behind us! A few weeks ago we also learned that Mazy had to have her tonsils out and we weren’t sure how it would go since Mazy has been really struggling with anxiety about my own health issues. Though I’m beyond grateful to report that she had a successful surgery yesterday to remove her tonsils and both ear tubes, and then have a patch put in one ear. She was incredibly brave and we are incredibly proud of her! Glad to have it behind us, now to control the pain and get her healed up these next 2 weeks. The “silly syrup” as they call it, to help her relax, did wonders!

Then last week we also learned that my heart isn’t quite where it should be, which comes as a little bit of a surprise. We knew that my last ablations in March didn’t necessarily go as planned in the sense that they weren’t as successful as the doctors had hoped they would be. It can take the heart some time to heal after an ablation, but over the past few weeks, I haven’t felt that there has been much of an improvement. Initially I thought oh yeah, it worked! But my blood pressures have been low, I’ve felt very fatigued, walks aren’t as easy as they used to be, and my blood draws are proving that something isn’t quite right yet. Now of course it’s not like we are looking for the cure because there is no cure for heart failure. But the doctors were hoping we could all manage my symptoms a bit better.

During my video visit this past Friday, my doctor expressed her concern that she thinks I might have another disease called cardiac sarcoidosis. I know, big word that took me a bit to confidently pronounce! Basically, they think that my heart might have a lot of scar tissue within in, causing a lot of inflammation not only in the heart, but possibly elsewhere too, which in general terms, is not good. I have almost every symptom of CS such as shortness of breath, fainting (I have low blood pressures), fatigue, palpitations, irregular heartbeat, and edema (excess fluid). The only symptom I don’t have is chest pain. If I am diagnosed with CS, then they would have to put me on immunosuppressants (steroids) and would make a big change to my treatment. There is no doubt that I obviously have heart failure as well, but the combination of the two can wreak havoc on the heart, so we are thankful that one of the processes of having CS is getting an ICD in place, which I already have! So if I am diagnosed with it, I already have a big step done! I could try and explain CS more, but I encourage you to google machine it if you are interested in learning more. They will do a much better job at it!

So over the next few months, I will be going through extensive testing for that, which includes a MRI, PET scan, lots of blood work, exercise VO2 test, ECHOs, EKGs, etc. CS is hard to detect, but they have found through nuclear medicine tests such as PET scans, that it can be determined a bit easier, so we are hoping answers can be found. And maybe I don’t have it, which would lead us to the next process:

Determining how close I am to a transplant. During my video visit, it became evident that the heart isn’t responding the way we had hoped it would to medications and procedures. I am going to try a new med that is actually prescribed for diabetics, but has been proven to increase mortality rate amongst heart failure patients. It will take a change of diet and has its own source of side effects, but it’s worth a try.

Of course, the idea of a transplant isn’t always easy to swallow. Three years ago, I went through a slew of tests to determine if I would qualify, but I missed the mark by a very small percentage. But God knew it wasn’t time yet and I’m so thankful too, as medicine and heart failure management continues to advance. Ablations have helped prolong the idea of a transplant as well, but we are now back to the drawing board. My doctor was so gracious in her introduction of the idea, and her willingness to discuss and process it with me, was amazing. She encouraged me to call the office again to discuss it more, but at the same time, I think we want to first see if I have CS and then go from there. Though having that disease would also lead me closer to a transplant, but would maybe help bridge that gap a bit better too.

Now let me clarify: if she put me on the list today, I wouldn’t get a call. We need to do a lot of testing and maybe those tests will prove that I’m not as close to a transplant as we might think, but every year now, I have to go through testing to figure that out. As we get the test results for CS, it will determine what tests will be needed to determine my level of needing a transplant.

Again, all of this doesn’t mean that I am having a transplant this year. It will be in my future at this point, but the timing we aren’t unsure of. So much goes into a transplant such as qualifications, level of need, overall health, etc. But figuring out if I have CS and running these series of tests will just give us all a better picture of what God is allowing with my heart.

This was just a lot to process as we anticipated Mazy’s surgery, comprehending that I might have another cardiac disease, and then thinking once again about a transplant, which is a grueling road. And on top of that, recognizing that we are still helping Mazy process my ablations and the separation anxiety that comes with me having heart failure, appointments, and health issues. It was a lot to balance.

But God hasn’t thrown up his hands in frustration. He knew this would be the exact time He would introduce these ideas to us. He knew that this would be the perfect time because He is moving all of these other pieces around, to make everything fit together, just so. He knows what is best for me, for our family, where He will get the most glory, and where His majesty will be most powerfully shown. Does it make this process and time of life easy? No, but it does give us hope and peace. The goodness of God doesn’t mean that only good will always happen. It means that His sovereignty and providence will always prevail and His plan is worth trusting – and in that, is where His goodness is found. He always has our best interest when it comes to our salvation and growing in our faith.

This has been a tearful and faith-growing time as we plan for these appointments and process these ideas, but we pray that through it all, we will make His name known. That His work in our lives will encourage others in their faith journeys and struggles as well. God’s mercies are ALWAYS new every morning and may that be our hope each and every day!