Dear Friends and Family,
After much thought, I’ve created this blog to help keep everyone updated on my health journey.
For those of you who don’t know yet, I have recently been diagnosed with Chronic Congestive Systolic Heart Failure. During a multitude of tests, a genetic test showed that I also have Loeys-Dietz Syndrome, a connective tissue disorder. This further complicates my heart issues. As if that weren’t enough, further testing showed that I need an Aortic Valve replacement and have an Aortic Aneurysm. I will have more information on this shortly, because my aneurysm needs immediate attention.
This all started back in February 2025, when a routine echocardiogram showed the heart failure. Since then, it’s been several months of testing, procedures and working on getting different opinions. Right now, I’m waiting to get an ICD (defibrillator) implanted on August 11th. The first procedure for this in June was aborted due to a vein collapse. I spent the night in the hospital and found out in the morning that my lung had been nicked in the implant attempt and collapsed. This turned into an emergency bedside chest tube insertion. It was very scary, with 2 surgeons and 4 nurses all working on me at once and no time for sedation. Three more hospital days, not fun! Hopefully this next attempt will work. They sent me home from the with a wearable defibrillator vest and battery pack that I haul around full time. Looking forward to getting rid of them!
My first opinion surgeon did not think that the aortic valve and aneurysm surgery would be successful due to my enlarged heart and thought I should be evaluated for a heart transplant. My second opinion surgeon is calling a team “powwow” to evaluate my options. I should know something by mid-August, after several more rounds of testing and imaging. I feel that I am in good hands, and the doctors have told me that my heart has compensated well from my healthy lifestyle and exercise.
As it turns out, these heart problems are genetic, and my Dad had similar issues. This has been very difficult for me to accept, because just a few months ago, I was very active, doing Zumba and Silver Sneakers classes. The emotional aspect has been something I have had to work through.
This page will be a place where I (or someone close to me) can share updates, test results, decisions, and how I’m feeling. Please know I’m reading your messages even if I don’t reply right away. Your care means the world to me. It is much easier for me to provide updates on here for everyone to read. I will do a separate post outlining my upcoming testing and doctor’s appointments.
Please feel free to check back for updates. I’ll do my best to keep things current. Thank you for walking this path with me. Your love and support mean the world.
With love,
Sharon
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