Janea's Profile

As a child I was diagnosed with Mitral Valve Prolapse. I always said I had a "honking heart" because the murmur was so loud you could hear it and it sounded like a goose. When I was 31 I learned it was leaking severely and had it replaced with a porcine tissue valve. The surgery was very hard on my heart which was so damaged it almost didn't recover. My ejection fraction after surgery was in the 20's. I was in the hospital for two weeks (a little over a week in ICU). They thought I was bleeding out into my chest after surgery because my blood pressure was so low. I had a terrible time recovering. I ended up with lots of extra fluid all over my body including around my lungs which crushed them and I had a large plural effusion. Eventually my heart rallied and my ejection fraction went up to 55. Phew! I had three young children at the time and was able to have a fourth baby post surgery. Hooray. A couple years later after never being able to get back to an active lifestyle, I was diagnosed with valve mismatch. The valve is too small for for my body and the opening of my valve is so narrow I have significant exercise intolerance. This has been very hard for me as I used to be a runner. Despite it all, I would say that having a tissue valve has been wonderful. It gave me the opportunity to safely have another child. It was worth it just for that! Another silver lining - during the busy years of raising four little kids I have not had to worry about coumiden or my diet etc... Aside from my exercise limitations I have had a very normal life. I have had energy to teach music classes to kids (moving, dancing, up and down off the floor) and chase my children both figuratively and literally - I have had enough energy to run into the street and rescue a wandering toddler...etc... Now they are a bit older (ages 14, 13, 10 and 7) and I can keep up with our busy days which start at 5 am and end at 11 pm. While I haven't been able to do rigorous activity such as swimming or hiking (even walking up stairs and hills is hard) I am so grateful my day to day energy has remained it tact and that I have been able to serve my family without heart-related exhaustion. Recently, I learned my tissue valve (9 years old) is starting to fail. It is leaking and showing signs of stenosis. I am sad it didn't last longer. Like many others, I had hoped it would buy me 15-20 years and that technology would provide a better, newer solution once it needed to be replaced. Now my husband and I find ourselves in a flashback of sorts. we are looking at all the old websites (and new ones...like this one!) We are addressing fears and asking the same questions we 9 years ago as we try to discover what the best course of action is at this point in our life. I am not thrilled with the idea of coumiden. I hate the idea of being on that medicine for the rest of my life. But I also don't think having multiple open heart surgeries is the way to go either. Here I go on another journey. Looking foward to making new friends along my way. :)