What to Expect
So it turns out the Seattle Heart Failure Model is not what I thought.
Josh and I went to Milwaukee a few days ago to see my Cardiologists. Funny thing is that it turned out the man who designed the program is a friend of my main Cardiologist. But he informed me that it wasn't really meant for individuals but more as a tool for heart failure in general. He also told me that things like that are not helping me. Both looking up stuff on the internet, and putting hope in such a thing. Knowing exactly how much time I have left will not get me better. And I understood.
It was a really tough visit, but a helpful one. I tried to explain that I was looking for the longest life span of a patient with heart failure. Because all I wanted was hope. And that is how I found the Seattle Heart Failure Model. I told him all I ever read is the standard 5 year statistic, or at most, 10 years. I never read about anyone living past 10 years. So I just asked him, have you had any patients who've lived another 20, 30 years? And he said yes.
Just hearing that made me feel much, much better. I realize that might not be me, but it makes me at least feel like it could be me.
I don't know, I'm obviously still having problems dealing with this. Hopefully it's normal. I feel like I've been given a terminal diagnosis. No one used those words, but there's no cure, and I'm not expected to live long, though that doesn't mean that for sure. AND, I JUST had a baby. What a great thing to hear after that. "Congrats on your new daughter, too bad you don't get to see her grow up" Is what it feels like pretty much.
One day at a time, right?
Josh and I went to Milwaukee a few days ago to see my Cardiologists. Funny thing is that it turned out the man who designed the program is a friend of my main Cardiologist. But he informed me that it wasn't really meant for individuals but more as a tool for heart failure in general. He also told me that things like that are not helping me. Both looking up stuff on the internet, and putting hope in such a thing. Knowing exactly how much time I have left will not get me better. And I understood.
It was a really tough visit, but a helpful one. I tried to explain that I was looking for the longest life span of a patient with heart failure. Because all I wanted was hope. And that is how I found the Seattle Heart Failure Model. I told him all I ever read is the standard 5 year statistic, or at most, 10 years. I never read about anyone living past 10 years. So I just asked him, have you had any patients who've lived another 20, 30 years? And he said yes.
Just hearing that made me feel much, much better. I realize that might not be me, but it makes me at least feel like it could be me.
I don't know, I'm obviously still having problems dealing with this. Hopefully it's normal. I feel like I've been given a terminal diagnosis. No one used those words, but there's no cure, and I'm not expected to live long, though that doesn't mean that for sure. AND, I JUST had a baby. What a great thing to hear after that. "Congrats on your new daughter, too bad you don't get to see her grow up" Is what it feels like pretty much.
One day at a time, right?