Introduction

[pellicle]

Hi

UPDATE 10/25/16:

Last Monday I had my echocardiogram.
...
As I mentioned, no point playing Dr. Google lol, but my gut instinct tells me both cardiologists will want to do another TEE to get a closer look. Which hell, isn't necessarily a bad thing before I opt for such an invasive procedure.
... I'm trying to focus on one day at a time... getting enough sleep, staying hydrated, eating well, taking (short) walks, meditating/listening to guided imagery CDs/reading helpful books, & enjoying life.

reading that post I think you've got your head set in the right place, and with your attitude and a little bit of care I'm sure you'll come through the next few months with no problems and emerge on the other side better and able to restart life without the bung valve.

Best Wishes

 

[honeybunny]

I agree that you have a good grip on your situation from all angles with everything you have on your plate. Of course, this doesn't mean you will be anxiety free. I like the plan to go to the Cleveland Clinic. If nothing else I believe it will be a better place for you emotionally.

Come here whenever the stress gets to be too much and you need some emotional support. Everyone here cares about you and has been down this road.

Hugs~
Michele

 

[Guest]

Thank you both! And you're right @honeybunny.. I think I need to be somewhere completely different. My first TEE was done in the same hospital where my Mom died. Imagine my anxiety levels walking through those doors.

 

[Nocturne]

I'm sorry to hear that your progression was so fast. That sucks.

 

[Guest]

UPDATE 10/31:

My cardiologist's nurse called to discuss my echo test results. My doctor is out of office this week, so the consulting M.D. (whom I'll be meeting w/ 11/17) reviewed my results & basically confirmed what I already knew. My aortic valve is very, very narrow. There appears to be some narrowing of my mitral valve as well. Because two valves are showing stenosis, the cardiologist wants to check the pressure of my aorta (the main artery of the body, supplying oxygenated blood to the circulatory system). To do that, I need to have an MRA done. An MRA is a magnetic resonance angiogram.. a type of MRI scan that uses a magnetic field & pulses of radio wave energy to provide pictures of blood vessels inside the body. I'm a bit concerned about the radiation causing any sort of harm to my body. And well.. I've never had an MRI. Looks scary laying still in a tube. Of course, I'll have it done though. It's right in the midst of of my fiance's busy season (working 7 days/week), so I doubt he'll be able to join me. I don't want to ask my Dad. So I guess I'll have to suck it up & do it myself! I'm admittedly a bit more nervous now knowing I have two bad valves. I suspect that'll make for a much more complicated surgery & recovery. The nurse was unable to answer my question about timing (approximately when I'll need surgery), but seemed positive everything else read normal on the echo report, & I have no symptoms. Please send positive vibes (or pray, if that's something you do) for a good MRA report so I can at least get moved 'n married before surgery.

Will update you all again soon!

 

[Paleowoman]

UPDATE 10/31: I need to have an MRA done. An MRA is a magnetic resonance angiogram.. a type of MRI scan that uses a magnetic field & pulses of radio wave energy to provide pictures of blood vessels inside the body. I'm a bit concerned about the radiation causing any sort of harm to my body. And well.. I've never had an MRI. Looks scary laying still in a tube.

Hi - MRIs don't have any radiation, that's what's so good about them. And really MRIs are lovely ! Put me in an MRI tube and, well, I'm so relaxed. Ever seen 'House' ? Dr House takes himself off to an MRI scanner when he wants to think - it's away from everyone and just relaxing. You are given a pair of headphones as the machine makes several seriies of repetative noises/bangs which, if you didn't have the headphones on, would be too loud, but those bangs are still wonderful. I have extremely sensitive hearing but I do like to try and work out the patterns of the bangs which vary - the technician will tell you when the machine is going to make noises. Some people take a CD of music with them to listen to but personally I'd hate that, I can't imagine hearing music with the machine bangs in the background, that would be hell for me, just give me the blissful silence interspersed with the repetitive patterned noises. I've had several MRIs and always imagine I'm in a space pod in 'Star Trek' with aliens trying to comunicate with me. Here's a Youtube sound of one of the typical noises, they do vary: https://www.youtube.com/watch?v=8oI9YnhPNcQ

all the best !

 

[Guest]

I've seen several episodes of House! What's interesting is I used to really enjoy the show before my Mom died. After that, I was unable to stomach watching any episodes up until just a few months ago.

Hi - MRIs don't have any radiation, that's what's so good about them. And really MRIs are lovely ! Put me in an MRI tube and, well, I'm so relaxed. Ever seen 'House' ? Dr House takes himself off to an MRI scanner when he wants to think - it's away from everyone and just relaxing. You are given a pair of headphones as the machine makes several seriies of repetative noises/bangs which, if you didn't have the headphones on, would be too loud, but those bangs are still wonderful. I have extremely sensitive hearing but I do like to try and work out the patterns of the bangs which vary - the technician will tell you when the machine is going to make noises. Some people take a CD of music with them to listen to but personally I'd hate that, I can't imagine hearing music with the machine bangs in the background, that would be hell for me, just give me the blissful silence interspersed with the repetitive patterned noises. I've had several MRIs and always imagine I'm in a space pod in 'Star Trek' with aliens trying to comunicate with me. Here's a Youtube sound of one of the typical noises, they do vary: https://www.youtube.com/watch?v=8oI9YnhPNcQ

all the best !

 

[Nocturne]

Long shot here, but Guest. Have you ever had your Lp(a) levels checked? High Lp(a) is both heritable and strongly associated with AVS, especially when coupled with the G variant of SNP LPA rs10455872

 

[tigerlily]

Hello, your story is similar to mine. My mother also died from aortic stenosis, also she had rheumatic fever as a child, so other valve were damaged. I have three bothers and a sister, knowing it was genetic, we all went to get checked. Well, I am the only one that inherited aortic stenosis. I get quarterly check ups, doctor told "me" I'll probably need surgery within the next year or two. But it hasn't worsened over the past year.
With me, I felt I was lucky to be diagnosed, other than the aortic valve, everything else looks great. Blood pressure and cholesterol ect.. within range. (and have been a non-smoker all my life.)
I know it can be stressful, it was for me too at first, then convinced myself I was glad it was found. Great strides have been made concerning the heart, I'm not "to" worried about surgery.

Nusb22, I was just wondering what your quarterly checkups consist of. Do you get an echo everytime? I ask because they are expecting that I will need a valve replacement sometime within the next year.