Military Wife Confessions

I presently only have 1 of these 3 conditions, but thought I would post my story and offer advise anyone may have if they have or know someone who has any of these conditions. I dealt with all three for most of my life, so have a LOT of knowledge on them.

(Bicuspid Aortic Valve): When I was 3, I was diagnosed with a bicuspid aortic valve during what was a routine checkup for my MANY ear infections as a child (FYI parents=frequent childhood ear infections can be indicators of heart conditions). The doctor heard a faint murmor when listening to my heart one day, and after further exams, they discovered it was the BAV. I would mostly be seen by military doctors in those days, tho I saw a cardiologist or two at a children's hospital in Ft Worth.  When I was 11, my mom moved us back to New Mexico. At that time, TriCare/Champus began being the pain in the ass that they can now be known for (for those who also carry other insurance through employers or whatever). So I stopped seeing military docs and started seeing a pediatrics cardiologist and ....

(Distended Aortic Root): ....he diagnosed me as also having a distended aortic root. He put me on beta blockers (I worked my way up to as high as 150mg/daily to keep my heart ratedown). I had annual checkups and was told I would have to have surgery prob before age 18-20 to replace the valve w/ a normal sized one, if it progressed at the same rate as it had been. Without following precautions of meds/physical limitations/surgery, I ran a risk of aortic dissection which is almost always fatal.

(Marfans Syndrome): An 11 year old girl standing 5' 10" is not something you see every day. Add with this and several unique characteristics, and the cardiologist also felt like I should be seen by a geneticist for possibly having Marfan's Syndrome. Aortic dissection is one of the highest causes of death for those with this disorder. So I got checked out and sure enough I showed enough physical characteristics to be diagnosed with the syndrome. At the time, they did not have a blood test that could be performed for 100% accuracy.

At age 22, during my pregnancy, I  started seeing anadult cardiologist due to very high risk of carrying a baby w/ my distended aortic valve condition. My obstetrician also shook his head at me for having gotten pregnant, since Marfan's is genetic and runs a strong chance of being passed on to the baby, which would cause future health problems for it too. This was NOT a planned pregnancy, so my mom told him to stop showing so much disappointment (he's a family friend) Up front I was told c-section was the only possibility for birth because if I got my blood pressure too high, I could rupture the valve. The cardiologist did a couple regular echo cardiograms, not seeing a lot of concern that had previously been seen in the years before. Then he dida transesophogeal echocardiogram to get more of a look at the aorta. He then determined that I had "grown into" the size of my aorta - YAY! That means no surgery, and I was given the okay to deliver my baby naturally- which I DID!

Because of the risk of Marfan's having been passed on, my son's pediatrician wanted him checked out for it by a geneticist. By that time, they had developed the blood test that could be run to determine if it had been passed. We saw the exact same geneticist I had seen 11 years prior. At first glance, she looked at me and told me she no longer felt like I had the syndrome - I no longer displayed so many of the up front physical characteristics. She evaluated me and told me she felt like I just finally grew into my body, I must have just grown very fast at an early age.  She offered to still run the blood test on me, if we could afford it (VERY expensive). Thank God for being a military spouse and having TriCare, who could cover the entire expense if justified. The risk of the disease having been passed to my son was enough justification for TriCare, and we were able to have the test performed. The results: NEGATIVE!

I am so happy to say that I no longer deal with those two conditions. I do still have the Bicuspid Aortic Valve, but it is not an issue and presents no physical threats. I still go to a cardiologist every year to keep an eye on my Aortic Valve, should it ever decide to grow too much again.

My son is truely a miracle baby, if it weren't for all the tests I ran through with the cardiologist and then the geneticist, we would still be going on thinking that I still had both of those conditions!