Aortic Bicuspid Valve 25yr old female

[MissShelly]

     I am 25 yrs old , 112lbs 5' 2, at 7 wks old had surgery for a Patent Ductus Ligation, they then discovered my BAV. The Dr's told my parents would eventually need it replaced when she is 50-60. At the age of 20 I had an 4.5 Ascending Aortic Aneurysm repaired with Valve sparing surgery. Im followed by Duke University Medical Center every 6months.

      After my surgery my Surgeon Dr Jaggers told me and my parents that I had an Transverse arch Aortic Aneursym that was about 3.5cm and also a Coarctation of the Aorta. Within a year my Aneurysm grew to 4.5cm and the Coarctation stayed the same.I also have mod aortic stenosis  Last June when I went for my regular checkup with my Cardiologist Dr. Bashore he informed us that my heart was enlarged and that my left ventricle was dilated to 6.2cm. EF of 45%.  My aneursym was now at 4.8cm and the coarctation was 1.2cm.  

        I've been having alot of sx lately alot of chest pain, shortness of breath with activity, I constantly have nosebleeds atleast 4-5 a week, I've had to sleep with mutiple pillows almost to the point of sitting up because I cant hardly breath at night, Im constantly waking up at night trying to catch my breath. My question is when does the point finally happend when I need surgery??? I talked to my surgeon and he informed me that once your left ventricle dilates to 6.3 or greater you are considered almost congestive heart failure. Im 25yrs old. Im not ready for that. Also with everything I have would I every be able to carry and child to term safely without risk to me or the baby??
Does anyone else have anything else they could offer ??? If so they would be great...sorry for everything being jumbled just along history...

Thanks,
Shelly

[kenkeith]

Your condition indicates you are in heart failure range (EF below29%). About 6 years ago, I was in similar situation.. The problem is your lungs are congested with fluids (edema) because the heart is receiving more blood from the lungs that it is able to pump into circulation.  When you sit up gravity helps reduce fluids in your lungs.

I went to hospital emergency and told all I need to have said is that I am short of breath.  I was admitted to ICU for several days with congested heart failure, told I had had a heart attack and required oxygen... I was shocked.

You should go to emergency before there is serious heart cell damage that could be permanent...very important you do this without much delay  Currently, my heart is the normal size and pumping adequately...proper treatment can be effective and you should be able to have a normal life.  You may not require surgery but treatment is the only option as not doing anything can be life threatening.