Heart Journey Update

Two months ago, it was hard to imagine that I would be able to do anything summer-oriented like swimming, walking, and even socializing. I struggled to walk from room to room in our own home without getting winded, I had to dive deep to find the energy to converse with others without having to take constant deep breaths, and the idea of swimming seemed exhausting.

Well, God’s grace has been immense in this area of our lives. I vividly remember my last inpatient visit with the doctor while I was at the U of M hospital in April. He said their goal was to get me through the summer without getting hospitalized again and to be able to enjoy summer until the next round of “treatment” so to speak, for my heart failure. My friends, the idea of having to go back to the hospital is so far from my mind that it makes me tear up even saying that. In April, it was hard to make it through my days without feeling defeated and unsure if I could stay out. Now here I sit, living the summer that we had been praying for. Socializing around the pool, being able to take slow short walks, and even doing a lap in the pool. This is God’s grace in full display.

Currently I am getting my blood drawn fairly frequently to ensure I stay stable and can get through the next 2 months until our next steps. I had a video visit last week and both my PA and I were just thrilled about where I’m at. Both rather shocked, to be honest! My journey with heart failure has been so up and down and you just never know when the “up” and the “down” are going to hit.

Needless to say, the medication I was put on again in April is working! It’s the med that the doctors don’t want me on for long. We all weren’t sure it would work because I’ve had a 50/50 experience. Well, that success rate just got higher for me. We are praying that it will continue to work until they have to start weaning me off of it in August, to prepare me for my next ablation. I can physically feel that my PVCs (extra beats) are less and the ones I do have, are just different. I suppose that’s a good thing!

To think about the journey these past 2 months, it’s been a roller coaster. This past spring, my doctors weren’t sure I should keep working and that just devastated me. I was ordered to lessen my commitments and live life as slow and simple as I could. I know for some that may sound refreshing, but when this is an order and not out of your own will, it’s hard to process. Tears were shed and I had to give up a few things and was even asked to quit my job as a parapro. I struggled with the idea because I already had to say no to too much and to give up that, I just told them, “Let me try”. I mentioned that to the school and they couldn’t have been more supportive, loving, accommodating, and caring! Every single person did what they could to ensure I’d make it through my days. My doctors had the papers ready to go for me to quit, but again, by God’s grace and His grace through His people, I did it. In fact, there were a few days I had to hold back my tears because I was just so grateful to be at a place that I loved and felt so loved. Who helped me fight through this journey.

It’s sometimes hard to live on the brink of having a heart transplant from day to day. But the ultimate goal is for me to live as many years with my own heart so that I can live a longer life with a new heart, when that time comes. If that time comes. But for now, this is my reality and we are striving to keep Kristin’s ticker ticking as long as we can.

There are many things I’d like to do in life, but it’s often a “not yet”. I pray those days will eventually come, but until then, I will just enjoy what I CAN do. What a pure gift this summer has been and even though I get itchier than itchy with this new med from the sun (who knew it causes skin sensitivity to the sun), I’ll take itchy skin any day for the opportunity to live the summer that we were praying for! Hello sun shirts and umbrellas!

I will continue to get my blood drawn, find my limits, take life slow, appreciate grocery pickup, use my handicap hanger when necessary, and in August, start to wean off the med. All of those extra beats “should” come back, which I’m telling ya, does NOT sound pleasant, but it’s what needs to happen in order to prepare my body for my ablations in mid-September. (Hopefully the date doesn’t change)! It’s going to be a two-surgeon job, which tells of the complexity of my case, but we are just thankful for the medical advancements to even have this done. And maybe those extra beats won’t even come back! But we will continue to follow the direction God is leading us towards until he takes us on a detour.

Thanks again for all of the prayers! We couldn’t walk this journey without all of you!