as I’ve mentioned a few times in my posts I was born with some Congenital Heart Defects in a pattern that my new cardiologist has called a form of Shones Syndrome

Basically, I’ve got obstructions to the inlet of the left side of my heart (Parachute Mitral Valve, Mitral Stenosis) and to the blood being able to get out of the left side of my heart (to the rest of my body) (Sub Aortic Stenosis, Bicuspid Aortic Valve, and Coarctation of the Aorta) and a hole in the wall separating the lower chambers of my heart (VSD)

These were found about 2 months after I was born, I wasnt thriving, and all of the sudden I started gaining weight, my pediatrician put this together with the fact that I had a heart murmer and realized that I had gone into congestive heart failure, and the weight gain was water. Pretty much the rest is history, Dr Yeager in Burlington did some tests and made the diagnosis.

He immediately sent me to Boston Childrens Hospital for intervention. Surgery was held off at the last minute because some kid needed the OR emergently, I was bumped out of the OR…They did some more testing and decided to put me on Lasix and Digoxin send me back home to gain weight before they did surgery.

Mom tells stories of how difficult it was to get me to eat and gain weight, she also tells stories of me having breath holding spells, where I’d pass out and stop breathing…

They eventually decided to do surgery in march of 1988, they did an open heart surgery to patch my VSD with Dacron. After a couple of weeks in the hospital, and a few issues with arrhythmias post op I went back home minus the hole, plus some dacron and hardware and a few new scars doing a whole lot better

After my first surgery I did much better, was gaining weight easier, and thriving better, I still needed the lasix and dig to keep me out of congestive heart failure. They kept a close eye on me, doing frequent echos and EKGs and in 1991 they decided that I needed another surgery because I was developing sub aortic stenosis.

In april of 1991 they opened me up again and resected the membrane and stenosis below my aortic valve, again, I came through with flying colors, rumor has it that I was up and walking the next day. I have a few memories of this hospital stay that stick with me, most are positive, memories of playrooms, of walking down the hall from the cafeteria, etc. again I left the hospital doing much better than I was before I went in, minus the sub aortic stenosis, plus a few new scars…

1991-2008 I did awesome, regular checkups, some symptoms that were always either chalked up as nothing or as normal for me, my echos and EKGs were always normal for me with no progression:yeah your mitral and aortic valves are bad, but they arent bad enough yet, you’ll eventually need more surgery 5-10-15 years down the road, and the symptoms you have are going to be normal for you….you do have a couple bad valves you know

May 2008 I landed in the ER with a heart rate in the 180s which self converted, subsequently ended up with multiple ER visits for the same thing, and multiple episodes that I didnt go to the ER for, including several at clinical and work that interfered with what I was doing, eventually, after an appt with Dr Yeager and some testing I got in to see an electrophysiologist, Dr Lustgarten who said that I probably had SVT, and gave me a few options, an ablation, medication (Diltiazem) we decided to try the meds first because I was about to start my 3rd semester in college.

At the same time I switched from seeing Dr Yeager, who I’ve seen since 2 months of age to Dr Hopkins, my adult congenital heart cardiologist that I see now, kind of an emotional switch, I really miss Dr Yeager, as much as I like Dr Hopkins…

The diltiazem worked for a while, but by the end of december/beginning of january I was starting to have breakthrough episodes on the diltiazem.

In January I had an annual appointment with Dr Hopkins, they did an echo, and we talked about things, he said that everything looks good, no changes, we’re just gonna watch things. We also talked about the SVTs he encouraged me to get back in to see Dr Lustgarten to get the ablation.

in February I went back to see Dr Lustgarten, and had the ablation scheduled.

March 26th 2009 I had the ablation, Honestly, it was a SHITTY thing to go through, but it was successful, and I’d do it 100 times over for the same results, I’ve had a HUGE improvement since the procedure, at the post op appt Dr Lustgarten was really happy with the results, and told me I only had to come back if I need to.

in Sept I had a 6 month appt with Dr Hopkins, he said everything looks great, no echo, but the murmer sounds the same, and I look great…he told me to keep at it

all in all things are awesome, yea, I have symptoms, yea, day to day I have to deal with the emotional aspects, but I’m freaking lucky!!!!!

look for further posts on the emotional aspects…there’s alot I’ve left untouched here!

One Response to “My Heart”

  1. […] blog here.  You can also read about her CHD experience in hear Heart Stuff tag here, and her My Heart page here on her site), who has .  Morgan is also a RT, and is super awesome at being a great […]

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