Tuesday, May 3rd, 2011

In February of 2008 I went to the cardiologist and was diagnosed with aortic valve disease - mild to moderate insufficiency.  Mommy has been writing that on countless forms and informing every new doctor and specialist since then.  For the last two years, although I have gotten an EKG I have not wanted to "participate" in getting an echocardiogram.  So when we saw my new cardiologist Dr Mack in May of last year he recommended having me get a sedated echocardiogram the next time it could be arranged with another procedure I was already being sedated for.  My parents figured my jaw distraction in January of this year would be a perfect time but despite Dr Mack writing the order twice and Dr Norlin's office coordinating with my surgeon it didn't happen.  Mommy didn't have high hopes at my yearly cardiology appointment today that I would participate this year either.

First up was the EKG which usually doesn't bother me too much because I think having all the "stickers" put on me is kind of fun.  After that was done Dr Mack came in and hauled out a picture similar to the one above and discussed very thoroughly what was going on with my heart. First off - I have a bicuspid aortic valve.  Aortic valves are normally tricuspid (with three leaflets) but in 1% of the population it is bicuspid at birth (congenital).  Because of my abnormal valve the valve will not open fully (aortic stenosis) and will not close completely either (aortic insufficiency).  These two processes often go hand in hand like they do for me. Because the valve does not open fully it blocks blood flow to the heart and because it will not close completely some of the blood leaks back in the wrong direction.  My EKG looked great, though, and on listening Dr Mack heard just a slight murmor.  He promised to come back to talk after my echocardiogram.

We had to wait quite a while so Mommy let me listen to Yo Gabba Gabba music on her iPhone and even went out to YouTube and let me watch Caillou videos.  I was thrilled so when it was time to head to the echo room despite some inital nervousness once Mommy sat me on her lap on the exam table I watched the Caillou videos on her phone and the tech got right to work without a peep out of me.  About 15 minutes later we were all done and back in the exam room. Dr Mack came in and went through a short intro into statistics and standard deviations (Mommy had a terrifying flashback to the statistics class she took in college which she never thought she would need again) and explained that a few of the measurements were in the 1.5-2.5 standard deviation range which was not bad but one particular measurement was at the 2.69 standard deviation which was still technically within normal limits but a little higher than he would like to see.  Since Dr Mack doesn't have my previous echocardiogram he can't tell how high it was to begin with or how quickly it is changing.  For now instead of coming in again in 2 years he wants me back in a year and he is going to try to get my echo results from my cardiologist at UC Davis as a comparison.

Some things Mommy learned today:

1.  There are three periods of fast growth that place a strain on the heart - infancy, 18 months and puberty.  I have already made it through 2 of them with little change so the next hurdle is puberty.
2.  An aortic valve replacement is not the first choice if it were to get worse.  I could be placed on blood thinners, have the valve opened by a balloon or even have the valve repaired by either shaving off the thickening around the valve or adding additional tissue to the leaflets themselves to prevents so much leakage.  Doctors don't want to cut into the chest any more than necessary and depending on how early a valve is replaced it may need to be replaced multiple times over the course of someone's life. 
3. My type of heart disease is not the kind that usually results in someone dropping dead one day like the athletes you hear about on the news.  In their cases it is one of three things:
          a.  Thickening of the heart - since I am getting echo's regularly this is
               something they are already monitoring
          b.  Irregular heart beat -  I am not any more likely to have an irregular    
               heart beat than someone who doesn't have aortic valve disease.
          c.  Unusual electric pathways - just like the irregular heart beat I am
               not any more likely to have this than anyone else
4. Mommy had previously been told that when I am having surgeries (dental extractions, distraction, etc) that I need antibiotics as a preventive measure because of my heart.  When I had the hardware removed two weeks ago they had me take antibiotics for three days and when I had it put on I had doses for a week.  Dr Mack said that is old school protocols and overkill.  I only need one dose prior to the surgery - that's it.  My tummy thanks him!

After all the stress of will I or won't I sit for the echo Mommy was so glad to have it over and done with.  It was a great visit and Dr Mack and his staff took all the time I needed to get everything done.

Peyton Nicole Smith