HI Knew here... Tons of questions.....

[haley1298]

Hello everyone. My name is Jessica I am 32. I am married to a wonderful man, his name is Dan and he just turned 40 at the end of April. We have two beautiful girls, Haley 6, and Emma 3. While I was pregnant with Emma he woke me in the middle of the night with heart palpatations, he felt his whole body shaking and couldn't stop it. The next day we took his blood pressure and it was very high I called his doctor and got him in right away. They did many tests and put him on blood pressure pills, his kidney were functioning high to but they thought that may be because of the high blood pressure. Anyhow he was on the pills and the BP got better. Well three years later he woke in the middle of the night once again with heart palpatations plus chest pain. He woke me and I took him to the ER. They did the EKG, and some blood work said he didnt have a heart attack and sent him home with instructions to contact his doctor. She had him take a stress test which she said he failed, but the cardiologist said it was ok. He did an echocardiogram on my husband and found the following: "Te heart is essentially normal with very good pumping function. No evidence of scar tissue. Your mitral valve, however, does show evidence of what is called mitral valve prolapse. Both leaflets of your mitral valve are a bit floppy and when they seal they tend to bend backwards a bit causing some leakiness of this valve. You also have some mild leakiness of your tricuspid valve. The final thing noticed on your echo, was the suggestion only that there may be some narrowing in your descending aorta."

We meet with him after recieving this and it was discussed that he would do an MRI to further see the problems of the descending aorta. The radiologist also asked to do a CT along with the MRI. We got a phone call that same day from his cardiologist stating that indeed Dan has Coarctation of the aorta. It shows at least 50% pinched. The cardiologist here in our town have never seen this in an adult and we are now being sent over to Mayo Clinic in Rochester for their tests and meet with a specialist over there. I can not find much info on the net that has to deal with adults having this as from my understanding most dont surrvive this long without under going any treatment. I don't understand how it was missed as he has always had high blood pressure, two heart murmors.

Please does anyone know, or have had some kind of experience with this! Any info would be greatly appreciated.

Thanks
Jessica

 

[Georgia]

Hi, Jessica, welcome aboard. I don't have any information for you, but more folks will be along as they get home from work. You're at the right place. Suggest you search the site for "coarctation" and I know you'll find a lot of information.

Hang in there, and again, welcome.

 

[Karen]

Hi Jessica,
I had a coarcation of the aorta. Mine was in the ascending part -- something I have believed is most common. I'm about 13 years older than your husband, but probably even 40 years ago, coarctations were not regularly screened for as they are routinely in newborns today. I'm surprised that the high blood pressure and heart murmur didn't raise a red flag long before now, though. Two years ago, I was first diagnosed with my bicuspid aortic valve (a common defect among those who have coarctations). The technician who did the echo told me of a 50 year old man who had just recently been found to have a coarctation and had had a successful operation to fix it. But you're right, it's usually done at a much earlier age. I am considered to have been "old" having mine repaired at age 15. But not much was known about coarctations many years before that. Certainly the technology (or education) was not available then to diagnose the bicuspid valve at the time. My surgeon told us that there was only a pin-hole opening in my aorta as it left my heart (the blood finds other ways to get to various parts of the body) so it was pretty severe, and yet I did fine until I was 15 when the murmur was found in a routine physical. (The blood pressure was way high, but I hadn't been to a doctor in many years....)

I hope you get answers to the many questions that have been raised with these new findings. And that the coarctation will easily be repaired.

Best wishes!
Karen