A quick update about my PET scan done Monday here in Cincinnati. We are so happy to share that it showed no signs of cardiac sarcoidosis. We very much want answers to what has caused my heart failure, resulting in the loss of so much daily function, but we didn’t want it to be this. So this was happy news, indeed.

We return to the heart center in Cleveland again at the end of September, and we are hoping, since sarcoid, thyroid, and coronary arteries have all been ruled out as causes, that maybe this will be the appointment where we can start zooming in a bit on treatment plans. We will update again when we know more.

In the meantime, members of the Cleveland heart team stay in touch with me several times a week, in addition to weekly virtual appointments for now. And we are still playing with medications and dosages a bit and watching my labs. Monday afternoon, I suddenly began to feel a little less weak, and breathing became a little easier as their aggressive attempts to force some of the fluid away from my lungs seems to finally maybe be working now. I’m a little scared to get my hopes up, but yesterday I felt even a bit stronger and breathed a bit better than Monday, and today (Wednesday), while not quite as good as yesterday, has still been a bit better than my bad days. So maybe we are beginning to see some of the interim benefits of the medications that they have been hoping to achieve. Continued prayers are cherished for sure. One of our sons had a major facial reconstruction surgery today, and I was so thankful to be feeling better as we spent the day at the hospital for that! He came through surgery really well, and should be coming home tomorrow to start his tough, weeks-long recovery.

We had a little celebratory movie night as a family after we got my test results, and I spent time holding my “comfort chickens” on the couch during that movie. Comfort chickens? Maybe many of you don’t know about our temporary house guests. So I’ll also do a teensy update about them and include some photos as I close for now.

We did a study on winged creatures for science in our homeschool this year, and this summer we wrapped up that study by hatching fertilized chicken eggs. We had a dozen eggs in a borrowed incubator, and after twenty-one days we witnessed the amazingly beautiful births of seven healthy chicks. It was such an incredible experience in the middle of the hard things of life right now.

Our chicks grew so, so fast and are now six-week-old teenage chickens. They are quickly outgrowing their indoor cage (and getting very messy!!). So their time with us is coming to an end, and within the next couple of weeks they will be going to permanent homes. It looks like we have three males and four females, although we are still a little uncertain about two of them. The hens will join our neighbor’s hen coop where we can visit them any time we want, and the roosters (who are not allowed in our neighborhood) will be going to a local farm where a friend’s son volunteers and will continue loving on them in our place.

They are Speckled Sussex chickens, which are known to be social, more timid than other breeds, very sweet, and to make good pets. They have loved being snuggled (as you can see from the photos), and we will miss the fun and joy they have brought into our family for the past couple of months. Our golden retrievers, who both really adore these babies, will also miss them a lot. Enjoy the photo dump, including a few of our kids and grandkids with the chickens. I’ll update again when we have more news.

“We do not have a high priest who is unable to sympathize with our weaknesses.”
Hebrews 4:15

Thomas Goodwin writes in his 1651 book, The Heart of Christ, about this verse. He says, “I have chosen this text, as that which above any other speaks his heart most . . . and that so sensibly that it does, as it were, take our hands, and lay them upon Christ’s breast, and let us feel how his heart beats and his affections yearn toward us . . . the very scope of these words being manifestly to encourage believers against all that may discourage them, from the consideration of Christ’s heart toward them now in heaven.“

Words concerning Jesus’ heart are precious to me right now in all new ways.

My sweet Kathryn, my forever four-year-old baby in a nineteen-year-old body, knows how much I love and long for fall. I grieve the passing of fall every year, and start watching for signs of it well before summer’s end. As part of her daily physical therapy routine, her sisters take her for rides on her special tricycle whenever the weather allows that. And if she spots a leaf changing color, she collects it to bring home to me. (I am so, so blessed and loved!) She has found three leaves for me this month already. First this one:

And then most recently this one:

Do you see what I see? It is such a perfect red and perfect heart shape. Except for the broken lower left section. The area of the left ventricle. Which is exactly the part of my heart that is no longer functioning as it should and causes my heart to beat with dangerous irregularity. The part of my heart that has so drastically and suddenly changed my life.

I love this leaf. It brings tears to my eyes. It reminds me of Goodwin’s image of holding my own two hands trustingly over Christ’s heart and feeling it beat. Perfectly. For me. With love and compassion. With affection. And it makes me feel so safe and so loved and so gently cared for. No matter what. In spite of the broken parts of my heart and its dysfunctional rhythm. Regardless of what caused this to happen.

After my last blog post, I did hear from Cleveland Clinic’s heart center, and once we connected, things moved very quickly. I was sitting in their offices exactly one week after our first phone conversation. My new cardiologist, Dr. Carmona, is young but so knowledgeable, and he laid things out very clearly for us. Although we still don’t have any answers yet, he explained possibilities and treatments for each and the proper order for exploring each. We left there feeling hopeful, but also knowing there is still a long road ahead.

I am scheduled here in Cincinnati for the PET scan this Monday (Aug. 21) to rule out or confirm the cardiac sarcoidosis, and we are still praying that this test will show that this is not what’s causing my heart failure.

I have been in regular contact with members of the team at the Miller Family Heart Center in Cleveland since my appointment, and that will continue (either via My Chart, phone, or virtual appointments) until I return to Cleveland again at the end of September. They have added a number of new medications to my daily line-up as they attempt to help me feel better and try to decrease the risks of a worse, or even fatal, heart event while we continue searching for answers. The medications haven’t helped yet, but we are still slowly ramping up, watching frequent bloodwork closely for kidney damage (as the meds can cause this), and this team is amazing. They are caring, communicative, and great listeners, and it’s clear that it really is true that Cleveland is the place to be if you are having heart issues.

We are so thankful that they are close enough to drive to, and for help from a number of you as you have provided meals for our kids here when we have to travel and even helped with expenses to cover costs of hotel rooms for Scott and me while there. Again, we are so blessed and so loved. Thank you!

The children’s daily needs continue, and I’m doing my best to keep their school and all things going with the help of the the older ones who are all also still moving toward their own paths of independence in the middle of it all. In fact, one more daughter bought her first car this past week and begins her work as a nurse at UC Hospital downtown this coming week, and another son has a huge facial reconstruction surgery this coming week.

Scott and I continue trying to maintain our Friday date days to stay connected to each other and refuel, but those days look very different right now with all my my physical limitations. We were blessed with a fall-like day yesterday, including temperatures in the mid-70’s and a dew point of only 52 degrees. I ached to hike, but knew that wouldn’t be possible. Scott did help me down a short trail, though, where I was able to sit on a dead tree and breathe in the amazing air, listen to the breeze, and just be thankful for each of those moments surrounded by nature and reminders that God is good and still writing a beautiful story. It doesn’t matter if I can’t see the good parts right now. Scott took our dog Ellie for a little trot further into the woods, and it was a refreshing time for my soul to just sit there and lift my face to the heavens and know that I am held safely in the arms of a Father who knows what he’s doing.

I will continue to update as I can, and please keep those prayers going. We cherish every single prayer and word of encouragement and act of love. They keep us afloat.