We went to Salt Lake last week for Sarah’s annual post-transplant exam. It included two days of tests with a right and left heart catheterization, heart biopsy, EKG, x-ray, labs, echo and clinic visit. We went with worries clouding our thoughts, but tried to hold onto positivity as we entered the hospital. Besides the normal nervousness, we found out last week that two children we know who received hearts the same year Sarah did both have coronary artery disease, heart failure, and are listed for re-transplantation. Kelsen is separated from his brand new baby sister (and recovering mommy) as he lives in the hospital now until another new heart is available. Owen is living (with his mommy) in the CVICU in critical condition, far from stable, and has been moved to status 1A while he continues to fight. This news made us so sad, and a little worried about Sarah’s heart, considering the severe rejection and heart failure she experienced last fall.
We’re happy, grateful, and somewhat humbled to report that Sarah’s heart is still happy. Her rejection is as good as gone. The doctors at UofU said her biopsy was “negative” so we’ll take that as a “healthy, all clear, clean, and happy.” (For the “it-doesn’t-mean-anything-to-me-without-the-number” people like me, her biopsy results were: C1 V2 ISHLT0R pAmr1.) I know that doesn’t look like nothing, but you’ll remember that 1 (and 0) means none and 2 is very mild (and they usually don’t do anything to treat it). So, although it may not really look clean, a “negative” biopsy is what’s in the files! And, we believe the doctors with the files. 😉
Her coronary arteries are clean, clear and beautiful. Her pressures were were described as great. I’m still in awe when I watch the monitor during her echoes and see a beautiful four-chambered heart working perfectly. They didn’t have final reports on many of the other tests at clinic, but everything else looked good! They are starting to decrease her prednesone (steroid) again, just a little at a time. We’ll go again in July for another biopsy to make sure the lower dose (down 5mg by then) isn’t causing more rejection. They want to bring her down at least another 5mg, but she hasn’t had the best luck with that in the past, so we’ll take it slow and check things out along the way. She still needs to go in for a check on her liver, a cancer screening with a dermatologist, and an annual “girl exam” in the coming months to make sure everything else is healthy too. With a compromised immune system, it’s super important to have these other things checked annually to make sure there are no problems elsewhere. Not the most exciting plans this summer, but we’ll just have to make my June and July trips to Salt Lake into super fun girl-time shopping trips with a little splash of doctor slipped in.
This past week I’ve been thinking…. This world of medically-fragile children we entered 23 years ago is a vortex of emotion. It’s filled with tears of sadness and joy, prayers of comfort and gratitude, moments of hope and despair. And often, like last Tuesday, there’s a tinge of guilt that clouds the happy news of stable and good health. Just as we absorbed the great news that Sarah’s heart is, in fact healthy again, I saw a Facebook post of about our little friend Owen that his mommy was waiting outside the OR to see if the doctors were able to save him following cardiac arrest. My heart hurt, and as I said a quiet prayer for her, I also added my gratitude that my daughter is healthy. …And then there was the guilt…. (It reminded me of the feeling I felt years ago in the NICU when our baby got to go home and so many others didn’t.) I can’t figure out why it so hard for me to keep those things separated in my mind and heart…. My happiness and gratitude have no connection to her pain and despair. Yet, my happiness somehow felt inappropriate in my heart, even though I know in my brain that it isn’t. It’s a compassion conflict that I’ll have to keep working on. Probably always. As long as there are abundant blessings in my life and people around me struggling…..
I am so very grateful for Sarah’s good health, her beautiful future, and her gift of life. I pray for it to continue, and that her journey will continue to have countless happy reports. I also pray for Owen and Kelsen and their families, that they’ll have the strength and hope to endure their individual difficult journeys. We have learned that the collective power of faith and prayer is powerful. Please join me. Pray for acceptance, for comfort, for hope, for love, for health…for whatever God has in store for them…. This is one of the many inspirational quotes I have hanging on my bedroom wall. I love it. Whatever the struggle is, just keep hanging on until it’s okay.