Nothing could have prepared us for what happened last fall and the challenges we continue to face today as a young couple living with heart disease, a complex medical device and awaiting a heart transplant. Today, we are joining the American Heart Association Heart Walk to raise money for a better future.
This time last year, our lives had started to change, but we didn't know it yet. At the start of August 2020, Jeff began feeling off, but nothing that was extremely out of the ordinary: a cough, stomach issues, etc. By the end of the month, we had a very scary diagnosis: dilated cardiomyopathy and advanced heart failure. His heart was functioning at only 10-15%. What transpired from there was a 46-day hospital stay at the Cleveland Clinic (including three weeks of not seeing each other due to COVID restrictions), open heart surgery and months and months of recovery.
Dilated cardiomyopathy is a weakening and enlarging of the heart muscle. It can be caused by many things, but when it happens in young, otherwise healthy people, it's usually genetic and often silent. Both are the case for Jeff. An otherwise healthy body can compensate for a weak heart for quite some time. Doctors think this may have been going on for "months or years" before Jeff showed any signs. It's a cruel irony that his otherwise healthy lifestyle and habits helped masked this. The day before Jeff felt his first symptoms, he biked 24 miles on the towpath. Every night, all summer, we had been walking two miles nightly. Meanwhile, his heart function was extremely low. THAT'S how silent heart disease can be.
We spent our seventh wedding anniversary in the Cleveland Clinic coronary ICU, hoping that maybe this condition could be treated with medicine alone for awhile. The next day, we were told that we had two options: heart transplant or surgery to implant a Left Ventricular Assist Device (LVAD), an internal/external heart pump. Either way, that was the last day I'd be able to see him until after surgery, because the COVID-19 risk was too high. Our first choice (and the doctors') was heart transplant but due to a somewhat rare complication, it wasn't possible at that time. (He has since been added to the transplant list.)
So, on Sept. 30, Jeff underwent open heart surgery to implant an LVAD. The device is connected to his left ventricle and aorta and assists his heart with pumping blood to vital organs. It is powered by two heavy batteries that he must wear at all times, which are connected to the pump through a line that exits his stomach. The device requires advanced medical care from the Cleveland Clinic on a regular basis. I have also been trained in many aspects of it. While we are back to doing many things that we love, there are daily hurdles, both mental and physical.
As long as Jeff continues to do well, we expect the wait for a new heart to be quite long, in the ballpark of 2-3 years. We are facing a lifetime of care for his heart condition, and the American Heart Association can make a difference in the future medical care he will receive. Ten years ago, there might not have been an option for him. Ten years from now, who knows what scientists and doctors will be able to do?
I walk because I want the best possible future for my husband and others like him in the world. And when combined with a million other Heart Walk Heroes across the nation, we have an even greater impact toward curing heart disease and stroke. Will you be a Heart Walk Hero with me?
Your donation will fund groundbreaking research that literally keeps hearts beating and helps people have longer, healthier lives.
Have a heart and help me reach my goal today!