My brother was diagnosed with a bicuspid valve with stenosis at a young age. He was followed by cardiology as a child but follow-ups were less frequent as an adult. In March 2019, at age 38, he developed a high fever and flu-like symptoms. After some hours of uncertainty, he was diagnosed with infective endocarditis of the bicuspid aortic valve (secondary to an insidious dental infection). He suffered multiple embolic strokes from the large vegetation on his valve. He is extremely fortunate to live close to the University of Michigan and was transferred there for care. Defying all the odds, he was able to be weaned from the ventilator and transferred out of the ICU to undergo PT while awaiting aortic valve and ascending aorta replacement surgery several weeks later. His surgery was a success and he was discharged 5 days later for home recovery. Now, two years later, he is doing amazingly well - he takes his meds, follows with his medical team but otherwise leads a normal life as an amazing husband, father and dog dad.
As a result of my brother's episode, his first-degree family members were recommended to get echocardiograms to assess the aortic valve and aorta. I had had an echo as a child and my mom remembers being told it was normal except for "a small hole that would heal with time." So - I wasn't too nervous. However, my echocardiogram in August 2020 also showed a bicuspid valve and an ascending aortic aneurysm. The ascending aortic dilatation increased from 4.5cm in 8/20 to 4.9cm in 3/21. I decided to seek out a surgical opinion at Cleveland Clinic and am now scheduled for surgery 5/12/21. I am nervous and never expected to go through something like this, much less at the age of 41!
UPDATE: Surgery went as planned 5/12/21. I woke up in the ICU extubated. I don't remember a ton from that first day or two. I do know that I was never in significant pain (I don't think I got above a 4-5/10) with the PCA pump. I felt surprisingly good and calm and just went with the flow - sat up in the chair, walked when asked (and sometimes did the asking!), puffed on my incentive spirometer, etc. I was discharged on day 4 and felt great at home for the first 1.5 weeks. The biggest issue being perfecting my pillow fort for nighttime sleep!
Then, however, I started to get increasingly short of breath and tachycardic. First it was with stairs and inclines but then even walking across the room would cause it. My weight went up a bit but I didn't think much of it because my weight tends to fluctuate. I waited for my followup where I was direct admitted back to the ICU for large pericardial and pleural effusions. A pericardial drain was placed ASAP as that was more critical - it is not a fun procedure but tolerable. The worst part for me was the discomfort of having the drain in place afterwards. No longer on a PCA pump (like I was post-op with my chest tubes), I had to ask for pain meds when needed but they made me feel loopy or nauseous so I limited those. Next day, it came out (after putting out 800ml!) and a pleural drain went in. The pleural drain (a smaller pigtail catheter) was much less painful to put in and maintain. It put out in the end, over three days, over 2L of fluid!
I was told that all of this was due to a big inflammatory reaction my body created to the trauma of surgery and being on pump (post-pericardiotomy syndrome). As I read, it can happen in 10-40% of pts but it really wasn't something that was even on my radar. I was started on colchicine and ibuprofen and am feeling better every day. My concern is preventing a recurrence in the near future but also with future surgeries. Aiy!
Still feeling good and positive overall - even with this complication and re-admission, the process was so much less scary/painful than I anticipated. Everyone says it, but it's really true - the anticipation is truly the worst. Find a surgeon and institution you trust and focus your efforts on readying your home, calming your mind, being with family/friends and in nature in the weeks beforehand. You got this!
More Info About Me & My Heart
More About Me
I am from:
My surgery date is:
May 12, 2021
I was diagnosed with:
Bicuspid Aortic Valve