Real Mayo Update- 9/29/10

Hi All,

Sorry for such a long silence...I'm at my folks in Oklahoma and we've been having so much fun, I haven't had time to blog! And when I have had time, I've been too tired from all the fun. :)

So, a little more about my Mayo visit- it was really good. We didn't uncover anything wild; most of the test results were similar to my tests done in Seattle. But for some reason I really wanted to have everything done again just to make sure nothing was missed. So when the results came back very similar, it made me more comfortable trusting the docs in Seattle going forward. Maybe I'm not loyal, but this really is a business transaction for everyone, and I wanted to get "quotes" from other places, just to be sure. : )

Some of the tests I did were an echocardiogram, an exercise stress test, blood work, an overnight oxygen test, and chest x-rays.

The echo showed my heart function at 24%. My test in Seattle a few weeks ago showed 23%. The margin for error on that test is 3-4%, so it's essentially the same, but I like that it went up a bit, instead of down!

The exercise test was pretty telling. I'd done this test before and it had shown that when I had to stop the test, it was because I reached my limit with my heart. That was after I'd done cardiac rehab for months and was in pretty good shape (considering). This test showed that when I had to stop, it wasn't my heart limiting me, but that I was deconditioned. That's a fancy way to say out of shape. I'm not surprised because after my sparky shock, I was too scared to work out on my own and have just gotten back into cardiac rehab. So that means some of this wimpyness I've been feeling should go away as I get back into rehab full swing. Excellent!! We thought that was excellent news. I was worried that the shock had done permanent damage and I was just wasn't going to be as strong, but that's not the case.

The only other test that showed something different was the overnight oxygen test. You clip this little monitor to your finger as you sleep and it monitors your oxygen levels. During the day, my oxygen levels are very good (97-100%). But during the night, my levels got to 79% or so. That's low. The doctor thinks I may have a bit of sleep apnea, which you can get from congestive heart failure. So I may be doing a sleep study in Seattle sometime soon. Treatment for sleep apnea has been shown to improve the ejection fraction a bit, so that could be really cool too. And I may get better sleep and need less under eye make up in the mornings. Win win!

After I finished all the tests, I met with the doc to review. He was a little cocky, but pretty nice. He did tell me that after I get to the therapeutic dose of my beta blockers, my heartrate may get too low and that would make me eligible for a biventricular pacemaker/defibrillator. Basically, Sparky 2.0. This device has two leads that go into the heart (Sparky just has one) and can improve the ejection fraction. So that's exciting too!

I did ask him about transplant and he said I'm just not sick enough yet. He told me heart transplants are for survival, not quality of life. He said you have to weigh the risks vs the benefits, and the risks just aren't worth it yet. Who knows what will happen in the future, but for now, he said to plan to live like this for some time. He said to focus on getting stronger, losing weight, reducing stress, and building up on my meds. That is the best recipe for me right now.

I do feel good about the visit, even though nothing groundbreaking happened. I'm ready to plug along slowly now, just taking things day by day. That's completely against my nature, but I've been broken, like a wild horse in a Disney movie. Well, maybe not broken, but I'm tamed a little.

So that's what happened at Mayo. One sidenote- we saw more REALLY old people in Cadillacs there than you can shake a stick at. And one old guy stole my dad's newspaper and another old guy stole our lunch table in the cafeteria. I guess sick old people don't have much to lose, so they live life on the edge. : )

And thanks to you all for your well wishes for the trip!

Love,
Jana