Hello Everyone

[Alienswede]

Hi there,

I just thought I'd take a minute to introduce myself. My name is Eiwe Lingefors and I live in Dallas, TX. I'm originally from Sweden but have been here in the US for little over 7 years. I'm 25 years old. I assumed the nickname Alienswede a few years after getting here since I'm an Alien in this country and I'm a swede Makes sense eh? Since then I've used it as my DJ moniker and online name.

I've had very rare palpitations (one or two palpitations a month) since I was very young. I should probably also add that I was prematurely born and was born without much of an immune system. I didn't really develop a proper immune system until the age of 6. When I was 12 or 13 I was checked for a heart murmur with a negative diagnosis. These occasional palpitations is what made me decide to have it checked out once again. I've also had a mild persistent pain in my upper left chest for the last 3-4 months (it comes and goes with irregular intervals and frequency). My PCP referred me to a cardiologist where I had an Echo and wore a heart monitor for 30 days. During this period I ironically did not have a heart palpitation. I went back for my checkup and he told me that the echo showed I had a bicupsid aortic valve.

I've done a ton of research since then (this was about a week ago) just to know what I might be faced with further down the road. I haven't requested a copy of my echo results as of yet. My cardiologist did not mention anything about the persistent pain being related to the bicupsid aortic valve. All he mentioned was that I may experience earlier calcification of the valve than people with regular tricupsid valves. My research online tells me that there is probably more to the story than that. I'm currently not experiencing any noticable symptoms from my little genetic defect. Other than the occasional persistent pain, which I still don't know if it's related. What do you guys make of it?

My cardiologist scheduled me for a checkup in 6 months unless I started experiencing other symptoms like shortness of breath or diziness/fainting. Thus far I've had nothing of the sort, even under physical stress. I keep a fairly regular excercise schedule.

Well, I don't mean to type your eyes out so I'll stop here. Just figured I'd introduce myself and say hello. Any insight or recommendation you might have will be greatly appreciated!

Thank you!

 

[Ross]

Hello and welcome to the forum.

There are many people who can answer some of this, though I'm not one of them. OUCH. Because of the holidays, it's a bit slow in here right now. Give it some time and I'm sure someone will be along to help out.

Again, welcome aboard.

 

[Arlyss]

Hi Alienswede,
Yes, you are correct - there is more to the bicuspid valve story than just the valve. However, the big picture is not well understood and appreciated in the local medical communities typically; one must find those who specialize in aortic disease. The tissue of the aorta itself may also be abnormal, making it subject to enlargement (aneurysm) or tearing (dissection).
Please get the report of your echo, and find out the dimensions of the aorta itself. Even if the reading says it is in the "normal" range, it is possible that is has begun to enlarge relative to what is normal for you! Quite often there are no symptoms or pain when the aorta enlarges, but sometimes people do experience symptoms. It is important to get to the bottom of what may be causing your pain.
Here is a reference for you to read that covers the big picture regarding bicupid aortic disease quite well. http://circ.ahajournals.org/cgi/content/full/106/8/900?eaf
My husband had a bicuspid valve; I have written his experience at http://www.westga.edu/~wmaples/velebir_arlys.html There is a wide range of variation amongst those with bicuspud valve/aortic disease combinations. Please feel free to email me with any questions.
Best wishes,
Arlyss

 

[Alienswede]

Thank you so much for the links. However, the first one returns a page not found. Could you check the link again?

After having done the research I have now I am definately getting a copy of my echo.

Thanks again for your help, I really appreciate it.

 

[BillCobit]

Valve Disease Info

Valve Disease Info

Hello and welcome, Eiwe -

You'll get some good first-hand knowledge from the nice people at this forum. Also, the American College of Cardiology Guidelines for Management of Valvular Heart Disease = the best & most comprehensive reference I've found on the web...and I've done a LOT of web research. You can download the .pdf version or view html @:

http://www.acc.org/clinical/guidelines/valvular/

This is a great book - describes pathophysiology & progression, symptoms, and indications for surgery.

Good luck!

 

[JimL]

Welcome, Swede! You needn't be an alien here.
There are a lot of numbers on the echo report that mean nothing to me. Two that do are the ejection fraction; normal is up to 75%, mine is now 69%, but before surgery it was below 30%. The other number is the diameter or area of your open valve. I don't know the numbers, but as this narrows, you need surgery more quickly.
I just had surgery at age 46. My history is similar to yours, other than the premature birth. Be sure that your valve is monitored regularly with an echo.

 

[Nancy]

Hi Alienswede-

Nice to meet you. You'll love the folks here. There are so many different heart valve and other problems, that you're sure to get some related info.

My husband is the patient here, and has been through some pretty serious stuff, his is related to rheumatic fever.

I hope you'll become a frequent poster, and that you'll look through lots of posts, and use the search engine. That can pull up a lot of relevant things.

 

[Arlyss]

Hi Alienswede,
So sorry about the error in the link. I had a typo - should have tested it! I tried it now, and it works - so if you just go back to my first message, the Circulation article should come up now. It is a very good overview of this condition, written by aortic experts at the U of Toronto. In fact, I suggest that people print it out and review it with their doctors. I cannot explain the reason, but even though this condition has been described in the medical literature for decades, it has not received the attention it should have. It may be partially due to lack of good diganostic tools in the past - but today that can no longer be the excuse!!
In my write up of my husband's story, I mention a paper by Dr. John Burks. He is a cardiologist in Pennsylvania. His paper describes two quite young men - one still had his original bicuspid valve, the other had had his valve replaced - both developed life threatening aneurysms.
Please don't hesitate to ask more questions. And just because the echo says your aorta is in the normal range, that does not necessarily mean it is normal for you! Once you know the number, we can review how to tell what it means for you.
If you have flexibility in the doctors you see, I would be glad to share with you some of the centers of bicuspid aortic expertise in this country. Please feel free to email me.
Arlyss