Mbeard

[mbeard]

This will be my first post anywhere in my 57 years. I was just diagnosed with a bicuspid heart valve (from birth), and an enlarged aorta , 4.2 ascending. I have been an avid athlete all my life, and this just showed up in July 2013. I have gotten two opinions, from two surgeons , and they both advised me, "let's just watch this.". I am not a very good "watcher", and I am shocked that I have this and it is just now showing up.

 

[Midpack]

Mbeard

Welcomed abroad!

There are MANY members here with your exact pathology. It is allways shocking to realize you have some heart condition, but with time and good information, most of the anxiety goes away. Nobody knows exactly how your valve and aorta disease will evolve over time. It may need surgery, or not. But you have to know that, if surgery is needed, you will be ok. Many posters have already had this kind of surgery, and they are enjoying completely normal and active lives. To sum it up, it is of course better to have a normal heart. But if something is not ok but is perfectly fixable, dont worry too much about it. Just make your regular checkups, and relax. You will be fine.

 

[mbeard]

Hey thanks . I have been sweating wasting everyone's time, cuzz I can see that the old adage "everybody has something". I am having a lot of pounding heart issues...been to the emergency room once in the last six weeks. They did another ct scan, more radiation, Wahoo! No changes. Anyway, thanks mid pack.

 

[MrsBray]

Hi there! I'm new to the forums as well, but I got my diagnosis 10 years ago. My "surprise" is that my body isn't going to wait until I'm 60 to need repair, it's probably going to be next year. I've slowly worked myself up from "woe is me" to "can we just get on with it already?"

A lot of my anxiety and anger and depression has gone away just by reading other people's stories.

Everything will be ok in the end!

 

[mbeard]

Hey mid pack ...again,?

I don't know how to do this questioning about my heart issues, but you have responded so you are ON for my questions. By thank you.

I was wondering how long I would be waiting to see how my aorta would grow?

My problem was discovered in July 2013. We were hiking I Jackson Hole, Wy. I felt bad, ie...altitude sickness, but when I got home, I pursued it, and discovered my bicuspid valve, and thoracic aneurism . 4.2 , 4.5 ascending.

 

[mbeard]

Mrs.bray

Mrs.bray

Hi there! I'm new to the forums as well, but I got my diagnosis 10 years ago. My "surprise" is that my body isn't going to wait until I'm 60 to need repair, it's probably going to be next year. I've slowly worked myself up from "woe is me" to "can we just get on with it already?"

A lot of my anxiety and anger and depression has gone away just by reading other people's stories.

Everything will be ok in the end!

We all have unpleasant surprises to take in, I have found. The size of my aneurysm isn't necessarily determining my discomfort. I have a pounding heart that scares me all the time. It is comforting to read that we all have an issue.

 

[ski girl]

MrsBray and Mbeard, I hope you can both take comfort from reading these forums, as you will see (and I don't mean this in a bad way!) you're not that special . . . ;-) You're no doubt both shocked by your recent surprises but the good news is you have something not uncommon and doctors have successfully been fixing BAVs for decades!

Deep breaths, and march ahead knowing that HEAPS of us have gone before you so your doctors have all had plenty of practice.

 

[AZ Don]

I was wondering how long I would be waiting to see how my aorta would grow?

You are lucky to find out that you have an aneurysm as now you can have it watched and corrected when/if necessary. I'm sure you don't feel lucky. I found out at age 51 that I had a bicuspid aortic valve and a thoracic aneurysm. The thoracic aneurysm's tend to grow, at about 0.1cm/year on average but it can vary widely from person to person. With a bicuspid valve your surgeons are likely to recommend surgery when your aneurysm reaches about 5cm. Losartan has been shown in a limited study to slow the progression of aneurysm in those with Marfan's, and it has been speculated that it may help in those with Bicuspid valves as well. This is currently being studied: http://clinicaltrials.gov/ct2/show/NCT01390181?term=losartan+bicuspid+valve&rank=3

There is a good summary of aortic aneurysm's and treatment, here: http://content.onlinejacc.org/article.aspx?articleid=1140497

 

[mbeard]

Thank you Az Don. I will read that as I sit in the waiting room waiting for my husband to come out of back surgery.