Dec 13
idnihus , Posted on SUPPORT NETWORK Blog

How to get your "head" in the right place.

I was diagnosed over 3 years ago with servere aortic valve stenosis. It came about after I passed out and was taken to hospital for concussion. A number of tests were run to see why I passed out and was given the diagnosis. They wanted to operate straight away, but I managed to get out (my mother had just had a stroke and I needed to take are of her). I needed time to think all this through. I was told I would be dead in two years, blah blah blah.
Well I am still alive after three years and I still can't get myself or my "head" in the right place to have the surgery done. I have a very difficult time accepting that this is not my fault (it is congental) that this happened to me. Its also very confusing to me that the cardiologists don't even want to confirm that this is congenital even though the radiologist confirmed it.
It is also difficult for me to belive that I might survive the operation, which btw the surgen will only do by open heart surgery.

Has anyone else here experinced "head space" problems or does everyone just "blindly" accept what the doctors are telling them?

  • cahuston
    idnihus, I knew that I had aortic stenosis, congenital like you, and an aneurysm for 17 years before I needed surgery. Stenosis usually happens because the valve was bi-cuspid instead of tri-cuspid. More than likely, you did nothing to cause this. Over the years, I did all kinds of research on the risks and the surgery. My valve went from 1.1 centimeters square to .8 centimeters square in about 9 - 10 months. I couldn't walk across a store without being tired. I was surprised to hear that it was time for the surgery. But hearing that made a lot of things make more sense. My cardiologist did an echo every other year and a CT odd the years. After an echo showed the aneurysm had grown a dangerous amount in a year. He ordered a CT to confirm. The CT showed the aneurysm was stable, as usual, but the valve had reached the serious stage. We saw the surgeon 2 weeks later on a Thursday, I was in the hospital the next Wednesday. Surgery was supposed to be on Thursday but the surgeon had a 12 hour surgery so I was pushed to Friday. I was nervous, but I knew what to expect. I was in ICU for about a day and a half. Thankfully, I don't remember much about ICU. That was planned by the hospital staff. I consider myself lucky. I was not in as much pain as I thought I would be. But keep in mind it is different for everyone. My surgery was on Friday, October 28, in the morning, I went home Wednesday morning. Because I live on the second floor, getting to the apartment was not easy but I had my husband and my mother to help. My recovery has been faster than expected. It helps if you are in generally good health before the surgery. I would suggest that you ask your cardiologist for a confirming test. If he won't, find another cardiologist that will do the test. Do some research and learn about the surgery. I listened to the doctors over the years but I did get the confirming test. I also suggest that you have the surgery. My brother had bacterial endocarditis 23 years ago. It took 3 months for the doctors to figure out what was wrong. His recovery was slow because he was so sick. Get the surgery before you get very ill. I hope this helps. If you can get in a positive mind, it will help. Having friends and family around will help too. Today, I start cardiac rehab, I'll be 7 weeks post surgery on December 16. I'm doing this because my heart hasn't worked right for a long time. I have my first grandchild coming in June and I want to be here is meet him or her. Good Luck
  • Elizabeth17
    @idnihus - Hello! Its the CEO of the head space club posting for you! lol I personally do not think it really matters if your condition is congenital, or lifestyle related etc. when it comes to making a decision on whether or not to have surg
  • debbadu
    I too am in that head space about my diagnosis chf they can't tell me why or much about it only that I'm maintaining which is really no quality of life because I no longer can do any thing I like without planning a 3 hour nap or a hole day of rest frustrated does. anyone have any ideas where to get these answers please
  • dwaynec
    Have you tried Nitric Oxide therapy? The medical community is calling Nitric Oxide the miracle molecule! Along with lifestyle change it's helping people who suffer from cardio vascular disease. I do a health awareness webinar every Monday and Wednesday at 8 pm eastern to help fight CVD. Please feel free to join in on our next webinar this Monday or Wednesday by clicking this link: or you can dial in 712)770-4010 code 594427. Also check out "The Whole Heart Solution" by Dr. Joel Kahn MD. To Your Health!! Dwayne
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