has finally come and passed! That's right, one thing I can finally check of my list of things to do this week! Today I met my new adult congenital heart cardiologist. Dr. Green.
Today was full of crazy terms that no 21 year old should know. But I know them. And I know what most of them mean!
Superior Vena Cava apparently I have two. Which isn't normal, but some times happens with other heart defects.
Hypo-plastic Right Ventricle was told that doctors now pretty much inter-change this with Hypo-plastic Right Heart Syndrome. But HRV is when your missing the ventricles but still have the aorta and HRHS is when your missing the aorta too. Or something like that. Either way, doctors inter-change them.
Anyways I know there was many more terms. I'm just slow right. It is 11pm after all.
So, I'm not sure how I never heard of Saint Alphonsus's before, its a big hospital! But we shockingly parked next to the right building! Go us!
So I met Dr Green. He was a nice, upbeat old guy. But I liked him. A lot!! He talked a lot, but made everything he said understandable. He mentioned my 2 superior vena cava's. And brought up the transplant subject. On average, fontan-ers (that's me!) usually go into heart failure in their early 30's. That means they usually get a transplant in their late 30's early 40's. But every case is different. That's just a average. So according to the average, I have 15 some years before transplant! As long as nothing happens.
He also brought up the baby thing. Again saying that it's really not a good thing. And most fontan-ers he's treated, cant successfully complete the pregnancy without either damaging their heart or miscarrying. I'm still not sure how I feel about this. I've been trying to work through this for some time now.
I asked him about my mitral valve. He told me it's leaking. I asked him about my lightheaded-ness. He wants to switch my beta blockers as he thinks the atenolol is causing it. So I am now on Coreg, which I have to take 2 times a day instead of one. Which isn't a big deal. He also wants me to carry a water bottle with me. To keep really hydrated.
So after I saw him I got an echo. Which took TWO HOURS. The techs (yes that's right, she brought in another to see my heart)where having a field day looking at my heart. They told me cause they usually just see babies, when they are sick. They don't usually get to see the heart all grown up, and repaired. Which really didn't bother me to bad. I like that people get all excited about my heart. It's neat.
Then after that it was on to blood work. Not an all time high, only 2 vials. My high is 6. But they are doing a CBC and all the usual stuff to make sure everything is okay. Plus checking my liver to make sure the extra strain on it isn't messing with it too bad.
They will call me with the results of both tests in a week-ish. But only if things are bad. So hoping for NO phone calls! And now its on to hurdle #2, my disability hearing. Please wish me luck, or say a prayer. I'm so nervous!!
Today was full of crazy terms that no 21 year old should know. But I know them. And I know what most of them mean!
Superior Vena Cava apparently I have two. Which isn't normal, but some times happens with other heart defects.
Hypo-plastic Right Ventricle was told that doctors now pretty much inter-change this with Hypo-plastic Right Heart Syndrome. But HRV is when your missing the ventricles but still have the aorta and HRHS is when your missing the aorta too. Or something like that. Either way, doctors inter-change them.
Anyways I know there was many more terms. I'm just slow right. It is 11pm after all.
So, I'm not sure how I never heard of Saint Alphonsus's before, its a big hospital! But we shockingly parked next to the right building! Go us!
So I met Dr Green. He was a nice, upbeat old guy. But I liked him. A lot!! He talked a lot, but made everything he said understandable. He mentioned my 2 superior vena cava's. And brought up the transplant subject. On average, fontan-ers (that's me!) usually go into heart failure in their early 30's. That means they usually get a transplant in their late 30's early 40's. But every case is different. That's just a average. So according to the average, I have 15 some years before transplant! As long as nothing happens.
He also brought up the baby thing. Again saying that it's really not a good thing. And most fontan-ers he's treated, cant successfully complete the pregnancy without either damaging their heart or miscarrying. I'm still not sure how I feel about this. I've been trying to work through this for some time now.
I asked him about my mitral valve. He told me it's leaking. I asked him about my lightheaded-ness. He wants to switch my beta blockers as he thinks the atenolol is causing it. So I am now on Coreg, which I have to take 2 times a day instead of one. Which isn't a big deal. He also wants me to carry a water bottle with me. To keep really hydrated.
So after I saw him I got an echo. Which took TWO HOURS. The techs (yes that's right, she brought in another to see my heart)where having a field day looking at my heart. They told me cause they usually just see babies, when they are sick. They don't usually get to see the heart all grown up, and repaired. Which really didn't bother me to bad. I like that people get all excited about my heart. It's neat.
Then after that it was on to blood work. Not an all time high, only 2 vials. My high is 6. But they are doing a CBC and all the usual stuff to make sure everything is okay. Plus checking my liver to make sure the extra strain on it isn't messing with it too bad.
They will call me with the results of both tests in a week-ish. But only if things are bad. So hoping for NO phone calls! And now its on to hurdle #2, my disability hearing. Please wish me luck, or say a prayer. I'm so nervous!!
<3 praying for you jessi ... i am really glad you liked your doctor!
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