BAV and Heart Aneurysm

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Gcxtian
New Member


Date Joined Aug 2014
Total Posts : 1
   Posted 8/5/2014 1:59 PM (GMT -6)   
My doctor has been leaving me in the dark, and I was wondering if anyone could give me some care advice or if they've experienced something similar and could help me feel better.

I am 22 with bi-cuspid aortic valve and have recently been experiencing some severe symptoms. Regular fleeting chest pain, extreme shortness of breath (I was an MMA athlete and now I can barely make it up a set of stairs), heavy weight gain despite no changes in diet, left arm goes numb very easily, and a few weeks ago I lost consciousness for an unkown amount of time for no apparent reason.

My trusted cardiologist I had since I was a small child passed away so I was forced to seek a new one. Couldn't get an appointment for two weeks and then after the appointment couldn't get my echo test for another two weeks. After that my followup got scheduled for another two weeks out which I'm currently waiting on. He was supposed to have a nurse call me with results of the test but never did. When I called up there i was told he was on vacation and all the nurse could do was tell me I have an Anuerysm in my heart and an enlargement. She couldn't even remotely tell me what that might mean. Am I dieing, is it no big deal, should i be prepared for a rupture any moment, is it okay for me to drive around despite frequent dizzy spells?

The word Anuerysm is very scary and I'm kind of freaking out about it. Since doing my echo test and heart monitor I feel like the shortness of breath has just been getting worse and worse to the point of I can barely function.

Has anyone here experienced anything like this? Is there anything to give you relief? I was considering going to a Hookah bar that has an 02 station and seeing if maybe the pure oxygen could help me breath normally for a little bit. Also should I get a new Doctor is it normal to never have my phone calls returned and be left waiting for answers for so long?

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 8/5/2014 8:14 PM (GMT -6)   
We looked it up, from what we saw, the Bi-Cuspid valve is congenital, it's supposed to be a Tri-Cuspid. This I'm sure you know.

Do you have fluid accumulation, often shows readily in your legs, usually shows up as indentable edema, push where the top of the sock line would be and hold for several seconds, if you pull your finger away and the imprint is substantially there, it a sign of edema. Alternately, it shows in the ankles.

My wife worked for doctors, including a cardiologist, she said that a specialist should have a doctor on call to handle the patients in the hospital and emergencies. Certainly, you have a right to speak with a doctor before your regular (new) cardiologist returns, your symptoms are profound, you need specific guidance. Sometimes you can call the doctor's office after hours, an answering service picks up, and you can tell them you need to speak with someone.

Do you know what your blood pressure is? If you're holding water (edema), it may be elevated, the doctor should consider your conditions and decide if you need a diuretic (water pill). This probably explains the weight gain. This is a decision that, in my opinion, needs taken care of before you new doctor returns from vacation.

My wife suggested that your family doctor may be an avenue as well for interim treatment. I requested that my family doctor call my cardiologist, which he did, and my family doctor detailed what the cardiologist suggested.

Last, but not least, the Emergency Room is an avenue. I'm not sure where you live, but many of the tests I had done here are in the computer, so that the E.R., specialist, and family doctor have instant access, it didn't have to be sent to them. If you are concerned, don't hesitate to be seen and tell them of your condition, symptoms, and concerns. They could admit you if warranted. If you know the hospital where your new cardiologists works through, it may help your overall care, or at least simplify it.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1157
   Posted 8/6/2014 2:38 PM (GMT -6)   
I have bicuspid aortic valve disease (BAV) and aortic aneurysm (AA), which is common to have with the BAV. I'm 38 and now have a prosthetic valve .

Where do you live? I would look for an Adult Congenital Heart Disease Clinic in your are.

If I were to lose consciousness, I would go to he Emergency Department ASAP and I have been instructed to do so by my medical team. If my weight fluctuates more than 3-4 pounds a day ( I weigh at the same time everyday) and I have feet or abdominal swelling, I go to the ED or Clinic. Those can all be symptoms of progressing problems with BAV and AA. Shortness of breath is another would garner a phone call to clinic right a way as well.

Here is a clinic directory. Good luck!

http://www.achaheart.org/resources/for-patients/clinic-directory.aspx
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