The Journey Continues

Update: GOING HOME TODAY!

Steps. Kristin, it’s steps towards getting you better.

That is what my ER doctor told me Friday as I awaited an ambulance transfer back to the University of Michigan.

This past week, I felt a little off, but nothing that raised too much of an alarm, until Friday morning, when my LifeVest alarmed me that if I didn’t press the response buttons, that it would shock me. I quickly pressed them, quickly called U of M, and they said to call 911 or go straight to the ER. I stayed on the phone with them as I called Dan to quickly come home so that Mazy could come with us. Made it.

Had a few tests done and felt pretty terrible. Lightheaded, blood pressures super low (77/low 50s, then low 80s, but then normal), and my heart was racing. Something was not right and I felt ill. As the tests came back and everything looked semi-okay, except confirming that my ejection fraction (percent of blood pushed out with each beat) was only 28% (when normal is 55-70), things were looking up. Though with my symptoms and heart history, Michigan immediately wanted me back there to monitor and find a solution to these symptoms and issues I am having. That meant a long ride in the back of an ambulance. It was a long day of waiting to get back to the place I have a love/dislike relationship. Love the care, dislike that I am not healthy.

I finally arrived at Michigan at 8:15pm, and was put in a room for monitoring as doctors listed every little thing that I was feeling, in hopes of deciphering why almost a year after two surgeries, I am still feeling so off. And why my LifeVest alerted me. I hung out there for the night and by 11pm, was finally able to eat and drink something, which wasn’t helping with the feeling lightheaded, headache, and fatigue. But all was well once I got some food in me. They then moved me to a more private “holding” room until I could be transferred to a cardiac floor.

I am a pretty self-sufficient patient, as this was not the first time I’ve been in the hospital, so the doctors got a kick out of it when I was napping, they came in, and I immediately reached around to grab the bar behind the bed to put it upright. They looked at me and said, “Wow, we can tell you’ve done this a few times!” Indeed I had!

By Saturday night, I was finally transferred to a cardiac floor and the room feels like luxury! Amazing view, an extra-long bed, my own bathroom, a comfy chair to sit in, a nice floor to walk around on, and I feel like I’m on Hollywood Hospital road! And, a TV that had NBC so I could watch the Michigan vs. ND game last night…though probably didn’t need to watch the whole thing…oye!

So what’s the verdict? My heart is definitely sick and needs intervention. The LifeVest incident on Friday is what they call artifact, meaning that it didn’t really show to be anything. I did have an increased heartrate, but no “event” occurred. The leads picked up something funky, so alerted me, but then found a correct beat, hence why it only went off once. So that is reassuring! Though…this hospital stay has not been for nothing! God sure had a plan through allowing that alarm to go off because otherwise this girl would not have gone in and I would’ve only gotten worse.

My heart has some significant issues that are not good to put it bluntly. The combinations of high pvcs (premature beats), high heart rate, and low ejection fraction (percent of blood pumped through heart with each beat) can do a lot of damage to the heart, that needs to be addressed. Like now, or I will have a cardiac event. They have increased my meds and so far, despite fatigue, I have tolerated it okay. Not ideal, but manageable. I am becoming more symptomatic, which is also not good, and my heart rate is only increasing, putting more strain on the heart, but that also makes me more fatigued. So it’s a downward spiral going fast.

The plan? Put me on a 12-lead holter monitor for 48 hours and then compare those results to the results from my May holter. If the PVC burden has increased, then they will try and do ablations (zap those areas). If the PVC burden is around the same, I will have an ICD (internal defibrillator) put in (non-invasive). There is some disagreement about what is causing what – are the PVCs causing the low EF or is the low EF causing the PVCs? Figuring out how many PVCs I am having and WHERE they are on the heart will be extremely helpful they said in determining what procedure they will need to do. Something will be done, but they want to try to choose the best option, without doing too much to the heart if they can.

You may be wondering why this wasn’t done, like yesterday or 3 months ago? I’m 34. They always try to increase EF and lower PVCs with medication first. After 3 months if it doesn’t work, then the next step is taken. If I was 70, they might be more apt to do something permanent, like an ICD right away, but because I am 34, they don’t want to do something permanent if they don’t have to. Any procedure and change is just that much more wear on the heart and this ole ticker has been through a LOT. In fact, they are thinking that the PVCs are near all the scarring from my previous surgeries. So after I get the holter, concrete decisions will be made.

It seems slow, but it’s right. I have all the peace I could about the plan. The goal is to go home TODAY, as long as this morning goes okay, my labs are okay, and I can get a holter at least set up. EKG is closed today and tomorrow due to the holiday, so they are hoping an outside source can connect with me to get one. So pray that all goes smoothly so that I can go home! I’m a diehard Michigan fan, but I can cheer from the Westside too!

This stay has been easy in the sense that I know exactly what to expect and what not, and even recognize faces, but not only is my heart taking a lot of wear, so are my emotions! This is turning out to be quite the battle. A battle I am determined to win and WILL win, but whew, it’s exhausting and hard. And not just on me! Please pray for Mazy. This is so incredibly hard on her and her tears and words of “I miss you Mommy, I just want to lay in your bed with you…” just bring this mama to tears. And Dan is left to pick up the pieces. He is a rockstar of a dad, but this is not easy on him either. Our families of course are there in two seconds to take Mazy, but she does not do well when we are separated like this, so we felt it’d be best if Dan stayed with Mazy because I do just fine on my own here. As much as you lay around, ya really are busy too (if you’ve ever been in the hospital, you know what I’m talking about). So the days fly by and it’s just better for our little family if Dan is home with her.

So what to pray for? Pray for God’s will to be done. This is all so disheartening, but as my ER doctor said to me as tears started to run down my cheeks as they explained I needed to be transferred back to Michigan, “Kristin, these are just steps. Steps to getting you better.” I could have wept. He spoke what my heart desires so badly – to just be badly. But sometimes God chooses to not heal us this side of heaven and that is a hard pill to swallow (much like those 20meq potassium pills I take). As Christians, if He gets greater glory through our hardships, well, that is what I want to. I’m not here on this earth for myself, but for Him. Don’t get me wrong, this is not easy and I get so frustrated. That ambulance ride I let a few more tears roll off my cheeks as I watched out the back window, my familiar, my comforts be left behind. But as I watched the world pass by, I knew I was being driven to a place that truly has my best interests and where I feel I receive the best care I could.

I met with a doctor last night that made me feel so loved. I had met her at one of my previous stays, and so when I saw her Friday, I said “SARA!” I was so happy to see her! She gets me. She gets my life situation. Having a young daughter, wanting to just be the mama I want to be to her, and just get back to health. She put herself in my shoes and said what my heart needed to hear – “This is not easy and this seems like such a long wait yet, and I know that. But this is truly what’s best Kristin. Through this holter monitor, we can choose the best plan and get you back to health. And back to your daughter.” She just GETS it. Not that others didn’t – don’t get me wrong. But it was that late night pep talk that affirmed to me that this is going to be okay. They know this is hard. But the heart is SO intricate and I have numerous issues, so they want to choose the right option.

So we wait to see! We wait to see what God has in store! I will keep you posted as I can. Thank you for all of your prayers and love! We couldn’t be walking this journey without you!

At the local ER – Mazy was the BEST nurse! She made sure her blankie was always near and she held my hand. Brings tears to my eyes! God has instilled so much compassion in such a little heart! This girl may be small, but she’s got a BIG heart of gold!