New test results and what is happening now..

[dani's nana]

I am happy to find out about my congenital heart defects. This coarctation is probably the reason for my stroke and and is the reason I have an aortic aneurysm right above my congenital bi-cuspid valve. Lots of things fall into place from my childhood on. Please keep up on following through when symptoms present themselves without pushing them to the side. The sad thing is from the past 6 years of 7 echoes that should have revealed the coarctation it was missed until yesterday. In fact it it developed within the first 8 weeks after conception. When problems presented symptoms when I was an infant the doctor told my parents I was lazy. Thank God for the advancements in the medical field. God Bless .. Next appointment Feb 19 is to see if they can repair the pinch in my aorta. I tried to attach a pic to show what I was talking about but I can't seem to do that.

 

[Paleowoman]

Very glad to hear that you have found some answers at long last to your problems. Bicuspid aortic valve also develops a few weeks after conception when the embryonic heart valves are formed, maybe around the same time as your coarctation developed, in fact it says in this paper about the embryonic development of bicuspid aortic valve that "BAV occurs in several genetic syndromes, including Turner syndrome, and is associated with coarctation of the aorta........" http://www.mdpi.com/2308-3425/2/4/248/htm Sounds like you are under a good team now - such a shame you had to wait so long !

 

[dani's nana]

The new team say that I am at such a high risk because of my previous stroke. I am hoping a stint will help stall the progression of my stenosis. Just diagnosed as severe which is why I was seeking a second opinion. Now just waiting for the doctor to tell me if my son and daughter should be seen. I have no idea if this is inherited or now. I want to keep my kids as safe as possible.

 

[Paleowoman]

How is your bicuspid aortic valve - will they replace that at the same time as dealing with the coarctation ?

 

[dani's nana]

No because of the high risk of replacing the valve. They want to put that off as long as possible

 

[Warrick]

Hi there, I also had a bicuspid valve which was replaced back at the start of November with a mechanical St Jude. I asked my cardiologist about scanning my 3 children as I had read it can be hereditary, he agreed and my kids are all having transthoracic echo's next week on the 10th Feb. From what I've read it is advised that siblings and children of BAVD are checked. Fingers crossed.

 

[Warrick]

Hi there, I also had a bicuspid valve which was replaced back at the start of November with a mechanical St Jude. I asked my cardiologist about scanning my 3 children as I had read it can be hereditary, he agreed and my kids are all having transthoracic echo's next week on the 10th Feb. From what I've read it is advised that siblings and children of BAVD are checked. Fingers crossed.
Sorry if this has posted twice

 

[dani's nana]

Warrick, I pray you are doing well. My daughter is scheduled for her echo on the 19th as I am undergoing my angiogram and aoivus on the 19th. I have told my siblings that they should be checked as well as my son, who at 34 thinks it is not necessary but thank God his wife doesn't agree, Prayers that results for you children are positive