I saw my cardiologist again today.

It’s so, so hot, and I hate having to go out at all. I mostly stay in the car with my feet up and the air blowing on max cold whenever I can while Scott runs inside to complete errands, etc.

Summary of today’s visit: My health continues to deteriorate.

While I wait for more appointments and hope for some answers, I feel as if I am fading. I feel like I fade away a little more every day.

We have made the decision that it’s no longer safe for me to drive, and since it requires both vans (and both of us driving), we no longer go anywhere as a whole group.

We celebrated three of our kids’ birthdays this past week, and I fell asleep as they were all opening their presents. I missed it. Scott made sure to get pictures, but it wasn’t the same.

One daughter’s birthday gift was a trip to the movie theater with Scott and me. When the day of her movie outing arrived, Scott dropped me at the door as he always does these days, but even walking at a snail’s pace, I had to stop and rest five times between the door and our seats inside the theater. It seems to take so much more energy than I have just to lift my foot and take each step. So much more breath than I have in my body to take in enough air.

Early this week, I made the decision to reach out online to Cleveland Clinic and officially request an appointment at their heart center. They work with patients and cardiologists all over the world (and especially all over the country), reviewing any tests that have already been done and meeting with patients to discuss treatment plans and diagnoses. They have reportedly been the number one heart center in the country since 1995. Scott and I felt like we couldn’t just keep waiting forever while I keep getting sicker and sicker. I should hear back from them in the next few days.

In the meantime, as I said above, I also had another appointment with my current cardiologist today. She was pretty shocked to see how much worse I was at this appointment than I was a month ago, and when a few tears of frustration leaked from my eyes, she and her medical assistant seemed to really finally hear me for the first time. She agreed with the surgeon who did my heart catheterization that the problem is not with my coronary arteries (or anything else that’s been checked so far) and that I really need to see the electrophysiologist sooner rather than later. They got on the phone with his office and convinced them to see me next week instead of at the end of August. This was a piece of good news.

She also wants to repeat my three-day heart monitor to confirm her suspicions that the medications aren’t helping anything. If this turns out to be true, she will stop those meds because she believes they might be partly responsible for how terrible I’m feeling.

Next, she ordered a PET scan to definitively rule out one other thing. An earlier test mentioned the possibility of sarcoidosis, but she felt that was very unlikely, so moved on to other possibilities. Now she just wants to be sure. We know very little about this condition, but from what we are hearing, in addition to being very rare, it can also be pretty serious. So it will be good to have this ruled out for sure. This scan will be done on August 10.

Lastly, she suspects I will probably need to have cardiac ablation since the medications haven’t changed anything at all. We hope to know more after we see the electrophysiologist next week, since this is his area, and we will still consider getting more opinions at Cleveland Heart Center, since things seem to be somewhat less than straightforward.

Thank you for any and all prayers as we continue following the steps of this part of our journey. This is not what we would choose, but we trust the Author of our story.

As I often do, I’ll end with a quote from one of my quiet times this past week. We don’t want to miss any opportunities to know more of God in all of this, and we know that the best and deepest times of learning come in the dark and scary times. I need these quiet times and reminders from Scripture and others who have gone before me.

“Sometimes it’s hard to know what God is doing. We all rage at God, demanding he do more than he is doing. He remains quietly unthreatened, saddened beyond words that we think him cruel or indifferent, but unswervingly committed to the course he has set. He refuses to redesign the plot of the book, having already written the last chapter and knowing that the ending is very, very good, and that every thread in our story is necessary to that conclusion.”
~ Larry Crabb, Finding God

The search for answers continues. My symptoms and reduced daily function continue. The statements of, “Something is definitely wrong, and it clearly shows up in all of the tests, but we don’t know what’s causing it,” from all of the medical professionals continue. As of yesterday afternoon, the numbness in my left hand has worsened and spread up my arm and is almost constant now, making typing a frustrating challenge as my brain tries to force the sluggish fingers on my left hand to move in sync with the fingers on my right hand.

So, please overlook any typos or mistakes I have failed to back up and correct.

But life and all the beauty that brings also continues.

First a recap of the most recent testing.

The brain MRI showed no damage to my brain—no signs of stroke in spite of the seemingly neurological indicators to the opposite. That was good to know.

The heart catheterization, while giving the cardiologist a really good look at what’s happening in that funky and faulty left ventricle of my heart and causing him to exclaim, “Oh, yeah! Look at that! The way the diastolic number dips with each PVC you throw? That’ll make you feel really terrible!” also confirmed that the coronary arteries are not causing this problem. So, while it really was good news to know that my arteries are in pretty good shape, and while he was a really kind and focused doctor, I already knew that what’s happening in my heart is making me feel terrible. So this merely eliminated one more thing.

As he put it, he, as the “plumber,” has checked out the plumbing and confirmed that it’s not causing the problem, so now it’s time for the “electrician” to check out his part. The “electrician” being the electrophysiologist I am scheduled to see at the end of August. The cardiologist told me that he is trying to get me in sooner than that now, based on the concerning activity he witnessed during the cath. So we are praying he is able to do this.

In the meantime, we wait and try to keep living life, because life doesn’t stop.

Scott’s eye surgery was beautifully successful, and we are so happy about this news and the results. He will have the left eye done tomorrow. He and I also just suddenly decided at the same time that we were ready for his Covid hair to go. So with his new look—short hair and no more glasses—we had the kids take a new picture of the two of us. Same awesome husband; whole new look.

The kids are showing a lot of signs of the stress of watching me kind of deteriorate before their eyes. Most of them talk well with us about their feelings, voicing their fears and concerns. But Kathryn isn’t really able to do that. Yesterday, she had two seizures and crying meltdowns. As usual, her VNS device stopped them both times when we swiped her with her magnet, and she tried her best to express what was causing her distress, but the most she could get out through her sobs was, “Mommy. Heart.” It still brings tears to my eyes to remember it. She needed me close to her all day, and although I’m not allowed to get my arm in the pool yet after the heart cath, I stood with it in the air and cradled her, floating weightlessly against me, in the pool for awhile yesterday afternoon. She and I were both comforted by this time together. We are still praising God for the miracle of this new pool!

Mozley has been dutifully sticking by her side, pressing himself against her when she cries, but he has also been trying to stick close to me, sensing that things are off. He has his big, gentle paws full at the moment even though Ellie stays alert to my every breath, too. The only thing better than being loved on by a golden when you are feeling distressed or ill, is being loved on by two goldens during those times. At one point yesterday, between Kathryn’s seizures when she was stable and working a puzzle with a sister, Mozley actually left her (which he never does!) to follow me upstairs. I dragged myself up the steps and collapsed onto our bed, trying to breath as Scott and I discussed some behavioral problems we’re having with one of the kids. Mozley stayed close to me while Ellie chose to leave me in his capable paws and rest on the floor beside the bed for awhile.

Lastly, we had a beautiful family gathering this past Sunday to celebrate such a special moment. Madlin and Raiza have both worked so, so hard for the past couple of years through one family crisis after another, through Covid and lockdowns, through their own fears and frustrations to pass all of their GED tests. They have both graduated now, and we gathered the family on Sunday to celebrate them and also Meghan’s graduation last month from nursing school. All my kids, along with Scott, worked so hard (while also helping their sister Robyn get moved into her new apartment) putting together an amazing meal and beautiful berry tart dessert while I sat by resting and looking on in both sadness and joy at their strength and capability and love. For me. For each other. For the family as a unit. The emotions are all too big to put into words, but I am so blessed. So, so blessed. It was a day of laughing and loving and celebration of well-deserved accomplishments. I’m so proud of my children.

I’ll close with some photos from our special day Sunday and with words from my morning reading in Finding God:

[Someday] the peace will be complete and the joy constant. Now, [though], we must enjoy the blessings when they come and persevere when they are absent. We must have the courage to continue when all good feeling is gone; we must call him good and remain faithful when we have absolutely no sense of his presence. To do so will sometimes feel like walking through wet cement. But still we must pursue him. It is a rather old-fashioned concept, but one worth keeping, because some problems, like Paul’s thorn in the flesh, will not disappear. They weren’t meant to.”
~ Dr. Larry Crabb