Amy's Photos

Good evening, everyone. The incredible community of beautiful people on this site was such a huge source of comfort and support nearly 7 years ago when I had minimally invasive mitral valve repair. I've even met one of the most precious people in the world to me on this site. We've been long distance friends for 7 years now, having both had minimally invasive mitral valve repair within a week of each other, and only finally met for the first time this past November. We got to spend a week together at her home in beautiful Connecticut. Anyway, I'm heading to another heart cath tomorrow. I've been told that the surgeons here have not ever seen a valve quite like mine. Unfortunately, the very unusual repair done back in 2018 did not last, and because of significant scar tissue forming over the patch that was used to extend my one functional leaflet, I am now very severely stenotic and moderately regurgitant. So now it's time for a valve replacement. Apparently, I've had a very rapid onset of symptoms. Last year, I started doing Taekwondo with my husband and our 11-year-old son and fell in love with it. Having severe chronic pain, and a 4 level spinal fusion, I didn't think it was possible for me to do even a single class, let alone keep it up 3 days a week and progress through belt levels. In November, I even competed in a regional tournament... My husband and I were the oldest competitors among 500 and I won three medals! It was seriously one of the highlights of my adult life! By tournament time, I didn't know exactly what was going on with my heart, but suspected something was off when I kept getting unbelievably winded with just 1 minute of gentle exertion doing my form (still won a gold medal!). I felt very close to collapse after sparring 6 rounds (I even won a round against a black belt instructor!). I cried at my cardiology appointment a week later when he gave me the results of my stress echo, told me my valve pressure was 4x the threshold for severely stenotic after just a minute of slow walking on the treadmill, and after working so very hard, I could not safely test to advance to the next belt 2 days later. And I have some really unfortunate complications with valve choice. Because of my age (50), a mechanical valve is what the two surgeons I've seen highly recommend. But earlier last year, multiple microhemorrhages were found in my brain on a routine MRI for my severe migraines. No one can agree as to why they are there, but a neurologist told me I should avoid blood thinners if at all possible, even telling me I should stop taking baby aspirin. I am told that a bioprosthetic valve would only last 6 to 7 years (also because of my age, apparently when you're younger, you wear out that type of valve faster), which would mean multiple heart surgeries that would significantly increase risk of complications with each. An experimental option was proposed where they could seat a valve in valve every one or two surgery cycles, but because I am on the small side, surgeons would not be able to seat a large enough valve to allow for this. The surgeon I've chosen wants this surgery done ASAP, but it's not looking possible until February due to scheduling issues. As it is, I may have to wait till the end of the month to have an appointment with a neurologist to get clarification on just how risky blood thinners are for me and my brain. I wasn't looking forward to being on Coumadin anyway, but that's much more preferable to having valve replacement every 6 years. I've gone through the myriad of emotions, and am more accepting overall and less anxiety-ridden then the first go around. I have been told by both surgeons that this is going to be a very difficult surgery, that my recovery will be much harder, and my severe chronic pain will mean the surgery is much more painful. At least this time, I will not be traveling out of town for surgery. Our son is now older and hopefully the impact to our relationship will not be as significant as last time. Thank you for taking the time to read this long post! I appreciate you all so very much and really love this community!