I am 39, live in Seattle, and used to enjoy an active outdoor lifestyle before my diagnosis.
Now I am facing aortic valve replacement, mitral valve repair, along with a bypass (not critical, but when they have opened up my chest, they might as well). I was diagnosed almost a year ago, after an echocardiogram I requested due to reduced capacity for exercise. Up until then I had been commuting by bike the last 5 years (13 miles r/t), in rain, wind and even snow once in a while, rollerblading on weekends, as well as hiking and skiing.
A few days after the echo I was advised I needed to set up an appointment with a cardiologist. Long story short, he sat me down and literally told me that my heart was ?shot? and needed complex surgery very soon. The heart was severely dilated, ejection fraction 20% or even less, both the aortic and mitral valves were leaking. The severity was quite a shock, but not completely a surprise, since I had been doing echos for a minor leak regularly. This time though, it was four years since the last time. They are almost certain the damage is caused by the radiation treatment I went through to cure Hodgkins' disease (lymph cancer) when I was 15. An angiogram some weeks later also showed narrowing in one coronary artery, also likely caused by the radiation.
I was put on the standard regimen of medication (beta blocker, ace inhibitor, lanoxin, spironolactone). Fortunately, this helped my heart shrink back to almost normal size, with an ejection fraction at 45%, and stabilized the situation. The doctors therefore recommended to not do the surgery until the the situation got worse, due to the risk associated with surgery. This was about five months ago.
However, with the combination of medication and the leaks, my capacity for exercise is drastically reduced, and activities I used to enjoy, are hard to complete, if at all. I tried to commute by bike, but had a hard time making it home. Being used to something completely different, this is hard to live with. Besides, the longer I wait, the larger the risk of permanent heart damage, as well as increased risk during surgery itself. After the latest echo showed some degradation in the numbers, my cardiologist recommended it was time. I think that was the news I was hoping for. In fact, I am starting to look forward to it, despite the risks and rehabilitation.
Yesterday I met with the surgeon, and it made the decision even easier. I had my questions prepared, some I found in this forum. Just a simple thing like asking about the brand of mechanical valve they would use for the aortic replacement, and if I had a choice. He said they were using St Jude. I mentioned On-X, and he said I could choose either of the two. After the consultation I ?reserved? my date of July 21st for the surgery with pre-op the day before.
If all goes well with the surgery, I should gradually get off the medication and back to normal exercise capacity. I am a little worried about life on Warfarin, (I have had a handful of hard to stop nosebleeds over the years), as well as health insurance issues in the future. Fortunately I am well covered now.
I am glad I found this forum. It has already been very helpful. Thanks to everyone contributing their knowledge and experiences. It makes it easier to face the surgery and rehabilitation.
Now I am facing aortic valve replacement, mitral valve repair, along with a bypass (not critical, but when they have opened up my chest, they might as well). I was diagnosed almost a year ago, after an echocardiogram I requested due to reduced capacity for exercise. Up until then I had been commuting by bike the last 5 years (13 miles r/t), in rain, wind and even snow once in a while, rollerblading on weekends, as well as hiking and skiing.
A few days after the echo I was advised I needed to set up an appointment with a cardiologist. Long story short, he sat me down and literally told me that my heart was ?shot? and needed complex surgery very soon. The heart was severely dilated, ejection fraction 20% or even less, both the aortic and mitral valves were leaking. The severity was quite a shock, but not completely a surprise, since I had been doing echos for a minor leak regularly. This time though, it was four years since the last time. They are almost certain the damage is caused by the radiation treatment I went through to cure Hodgkins' disease (lymph cancer) when I was 15. An angiogram some weeks later also showed narrowing in one coronary artery, also likely caused by the radiation.
I was put on the standard regimen of medication (beta blocker, ace inhibitor, lanoxin, spironolactone). Fortunately, this helped my heart shrink back to almost normal size, with an ejection fraction at 45%, and stabilized the situation. The doctors therefore recommended to not do the surgery until the the situation got worse, due to the risk associated with surgery. This was about five months ago.
However, with the combination of medication and the leaks, my capacity for exercise is drastically reduced, and activities I used to enjoy, are hard to complete, if at all. I tried to commute by bike, but had a hard time making it home. Being used to something completely different, this is hard to live with. Besides, the longer I wait, the larger the risk of permanent heart damage, as well as increased risk during surgery itself. After the latest echo showed some degradation in the numbers, my cardiologist recommended it was time. I think that was the news I was hoping for. In fact, I am starting to look forward to it, despite the risks and rehabilitation.
Yesterday I met with the surgeon, and it made the decision even easier. I had my questions prepared, some I found in this forum. Just a simple thing like asking about the brand of mechanical valve they would use for the aortic replacement, and if I had a choice. He said they were using St Jude. I mentioned On-X, and he said I could choose either of the two. After the consultation I ?reserved? my date of July 21st for the surgery with pre-op the day before.
If all goes well with the surgery, I should gradually get off the medication and back to normal exercise capacity. I am a little worried about life on Warfarin, (I have had a handful of hard to stop nosebleeds over the years), as well as health insurance issues in the future. Fortunately I am well covered now.
I am glad I found this forum. It has already been very helpful. Thanks to everyone contributing their knowledge and experiences. It makes it easier to face the surgery and rehabilitation.
