I can’t believe it’s 2024 and I still have this crazy ARVC heart. I was very hopeful 2023 would be my year for transplant but I am grateful to have my original heart and not be dealing with anti-rejection treatments yet.
The adjustment to Ava’s high school schedule has made my days look a little different. I don’t live in the Wayzata school district so I have to drive Ava to and from school each day. The high school is about 20 minutes away, sometimes more depending on traffic. So we are up around 7am. I have been easily falling back to sleep when I return home around 8:30am and sleeping until noon or 1pm. Logically I am thankful for this 4-5 extra hours of sleep. The plus side of sleeping this late is that I am able to enjoy “usable” hours later into the evening after Ava returns from school (cooking dinner, walking Eddie, band concerts, cleaning up dinner, etc.). But emotionally it’s sad sleeping half the day away. You may be thinking, “Go to bed earlier!” But I am in bed by 8:30pm and sleeping by around 10pm. Being asleep by 5 or 6pm is not an option. Sleeping 12-14 hours is another daily reality I need to get used to. I am thankful to have my faithful snoozing buddy, Eddie, so I am not alone in my resting endeavors. And honestly, my bed is my favorite place to be; my body is happiest resting lying down.
I see my heart failure doctor in early March and another round of tests mid-May. In March I plan to ask some more questions about dual listing at Mayo and also discuss my kidney function which continues to decline slowly even with the decrease in diuretics.
I have restarted working on a quilt I started last winter. It’s the third quilt I have made and the first I am doing all the quilting stitching by hand. It’s also the largest – a queen sized quilt. I can work on it in bed and not sitting at the sewing machine. Sitting in chairs is hard on my circulation so it’s a perfect project for the winter.
Ava has been busy rehearsing for the WHS winter musical, playing in the spirit band, hanging with friends and enjoying high school. I am so proud of her transition to high school. Ava and I also just finished streaming the Sherlock (BBC) series together and recommend it for excellent winter television watching!
Stay well and warm this winter, friends and family! Thank you for continuing this journey with me.
Heart Sick 
Tracy I remember all too well when I was sick and sleeping sooo much. As you know I live with mental health issues. I am doing great right now, 18 years into my illness. But I literally slept years away. I knew I was missing out on life, but I just was unable to function. And the guilt!!
What I’m trying to say, it’s just a part of your journey. You’re living with a serious medical condition and your sleeping is what your body needs. You arent lazy, regardless of what others may think. It is a symptom of your illness… something you have no control over.
Hang in there, my dear! Im praying this is your year! Keeping you close to my heart! Love ❤️ you!
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