I Should’ve Seen This Coming…

Have you ever had it where you knew something was coming up or that you had to do something, but kept putting it off in hopes that the problem would just solve itself? That would be me and my heart failure. I make the grave mistake of thinking I can do this, when in reality, I should’ve seen this coming.

This past Tuesday, I went to our local ER because I felt a lot of chest pressure, was short of breath, fatigued, loss of appetite, and was gaining water weight. Though I knew if I went in, that I would be sent to University Hospital in Ann Arbor. Was I truly to the point where if it was that bad, that’s where I had to go? I packed a hospital bag, just in case.

After getting hooked up to the heart monitor, I knew right away that it was not good. The pressure and shortness of breath I felt was due to not only fluid, but to the immense number of PVCs I was having. I don’t know how many seconds it takes for the heart rhythm to go across the screen, but I didn’t have more than 4 beats in a row that were normal. We know my PVC burden is 18%, which would mean every 5 beats, but this time, it was even worse.

Unfortunately an ambulance wasn’t available until the next day to take me to U of M, but I was stable enough by the afternoon to be driven, so a dear friend of mine and her husband, drove me out there. She’s a nurse too, so I felt even more sure that this was the right decision. We arrived in Ann Arbor around 7, but it was so incredibly busy, that I didn’t get an ER room until 12:30am, and didn’t get moved to the heart floor until 4am. It truly felt like the longest day of my life – especially while not feeling well. When I arrived in the ER, they saw my EKG that I had there and were quite concerned, but put me on like the second tier of waiters, so I can’t imagine how long some of those other people waited! I just came on a bad night.

We quickly learned that I was quite fluid overloaded, the most I had been in a long time and that the PVCs were incredibly frequent. They weren’t just normal extra beats, but runs of tachycardia, bigeminy, trigeminy, and others too. From all the chambers. The problem was, there was no easy answer and there would not be a fix-all solution.

By Wednesday morning, after I had slept about 2 hours, a doctor came in, asked how I was doing, and I just lost it. The poor guy! I was so overwhelmed, I felt terrible, was beyond tired, and couldn’t process everything that was happening. The word transplant was already being thrown around and I just wasn’t sure what I even wanted. Except just to get some relief. After talking with the doctors though, it became evident that the issue was two-fold and took two teams to address. My electrophysiology team and my advanced heart failure/transplant team. Between the two of them, after much discussion and testing, we decided to overload my body with a drug called amiodarone, to see if we can decrease some of the PVCs, just to get me feeling better, and give me lots of lasix, to try and reduce the amount of fluid around my heart. After a right heart cath on Thursday, they found that the right side of my heart doesn’t have fluid, the the left side of it, was severely elevated, which means that side isn’t working properly and failing. All things we knew or probably assumed.

The only tricky part is that this new medication, amiodarone, is labeled a “black box drug” meaning it should be administered only if you have a life-threatening arrhythmia because the side effects are intense. It can cause pretty strong immediate side effects, but also life-threatening long-term side effects too. The doctors really don’t want me to be on it, but there are no other solutions that have worked. They would like to do an ablation, but I would have to be off this med for 8 weeks, and I physically couldn’t keep living life at home, if I didn’t take something to alleviate my symptoms. So we are hoping that as this drug gets into my system (takes about 2 weeks to fully get in), that I will feel a bit of relief from the PVCs and that the burden is less. In the meantime, doctors have also tweaked some of my heart failure meds because that’s not getting any better either and I’m only retaining more fluid. But “what is causing what” is the issue. Are the PVCs causing the heart to fail more or is my heart failure causing the PVCs? If we can get my PVC burden down, maybe my heart failure would improve?

As the doctors said, I am a very complex case and there isn’t just one answer. Any option on it’s own, will not fully help. And so the discussion of a transplant is on the table. I will have another heart failure test, an exercise test, to see what my cardiac index is. The test determines if my heart can output the blood that is required with more activity. If the output doesn’t increase, then I will be going through further testing to be put on the transplant list.

I was able to finally come home on Saturday, which I felt ready to. I wanted to give home a try, knowing I would have to take it very easy until we could figure out my med changes. Life in the hospital isn’t very realistic, so the only true test was to go home and give it a whirl. I’d love to say that it’s been easy, but my blood pressure has been incredibly low, which makes me so fatigued, to the point I sometimes can’t stay awake (thankfully I know when those times are coming :)). So we have some tweaking to do with the meds, but once we figure that out, hopefully I can start to feel like Kristin again, until the next round of tests come. The goal is to help me feel well enough to be able to enjoy our summer and then in the fall, we will look at the bigger picture of ablations or the transplant list.

It has all been a lot. Sometimes I get quite overwhelmed when I think about the journey ahead, and so I try not to go there often. And when I do, I try to remember that God has already gone there and I don’t have to worry about! Easier said than done, of course. When I left the hospital, it wasn’t a “hope we don’t see you again”, but when they do, we will take the next steps. Sometimes it’s hard to live life with that knowledge. But one thing that has made this whole ordeal so much more manageable than before, was how well Mazy did. My friends, I can’t tell you how much work God has done in her life! If you know her, you know the work He has done in her. May that encourage all of us, that God is faithful from generation to generation! She did not cry once about me being in the hospital. She lived with joy, peace, calm, and laughter. THAT IS OUR GOD!

And when I see His faithfulness in her life, all the more I see His faithfulness in mine. Our God cares. Our God knows. Our God is more faithful than we could ever imagine. So it’s his faithfulness that we cling to during this journey, even though we should’ve seen this coming. There will never be an end this side of heaven, and sometimes that is hard to process and accept. But through it all, may we keep our eyes focused on the one who gives us all the hope and love we will ever need! For great is His faithfulness!