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Almost new to the club!
Hi there...my name is Andrea and I go for my "Shocker" surgery next Monday, Feb 8th. I will have a defibrillator put in due to VT.
I've been a heart patient my whole life. Born w/ tetrollogy of fallot, but had a total repair when I was 4 by Dr. Denton Cooley at Texas Heart Inst. I've always had right side enlargement and mvp, but issues started increasing. I ofcourse always said..."I'm FINE." In November, some of my coworkers noticed my blue hands and nervous attitude and sent me to the school nurse where I work. It happened again a week later, but I also had blue earlobes, back pain, and nausea. Heart Cath was done in Dec. and found the pulmonary valve has a severe leak. They dont know how much surgery will improve my condition, so they want to wait to do it via Trans Cath Valve replacement....which is not in Houston for general public yet. To see if I could wait a year or 2, I was given a 21 day self transmitting ecardio pack. Lots of skipped beats and pvc's. What they didnt expect was the ventricular tachycardia.
I am scared, but have gone thru brain surgery w/ my youngest. SO I AM STRONG......just mad that I have to deal with something else. More of my fear is getting shocked afterwards.
I am going to read as much as I can here....
Thanks for letting me post my story. It helps just telling it and feeling like I'm not alone! I'm 40 and the mother of 3 boys...18, 14 and 7. I dont want to live if I'm suppose to die...but I dont want to die if I am suppose to LIVE.
God is in control,
AndiC
3 Comments
Here's another forum for you
by agilitydog - 2010-02-03 04:02:12
Come visit valvereplacement.com for help/support with your valve issues, too.
We're a great group, several tet. of fallot folks there, and other congentital heart issues, too.
Ain't v-tach fun though??? NOT!
Thanks...
by AndiC - 2010-02-05 11:02:16
Thank you so much! I am 40...and do have a wonderful family and great friends. So much of me is trying to be positive and say " this is NO big deal ", but.......
So...one step at a time...Monday= defibrilltor.
Once I get thru this, I'll check out the valve replacement group. Maybe they can give me some insight on whether to wait for the trans cath valve surgery or just GO to where they are doing it and GET IT DONE!
Great group here...and loads of info!!!
Have a great weekend!
You know you're wired when...
Your life has spark.
Member Quotes
It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.
wow
by sam78 - 2010-02-03 02:02:18
you know I have stumbled upon some people like you, that make me smile every day. I did very intense care of children (neonates, infants, children up 20 years old) with congenital heart problems. Was my speciality to give care directly after surgery. While I dont know you the least bit, it is so nice to know that I can understand what you are going through from both the patient and the healthcare side of things. It is amazing to me when I get to meet patients that are old (and I dont mean OLD like anciet.. but old for me because they are no longer these tiny frail babies with sick hearts. So when I read you story.. you took me from imagining what your life entailed and what my life entailed up until now. And now here, you and I, are sitting in here with ICD/pacemakers and arrythmias. You make me proud of myself because I dont get to see the end results of my hard work at keeping these children alive. And now... you here 40 and 3 kids!!!!!!!!!! Wow I feel a sense of accomplishment just from hearing your story. I feel empowered. AndiC, you have been though so much in the first 6 months of life alone,...that discovering this will be NOTHING for you. I am sure that you know there is a lot stuff that goes on with valves later in life and things that need replaced depending on the type of repair they did... at 40 years old with kids, you have obviously lived a fairly healthy and productive life. This my friend is just the next step. God is in control, when he is ready, he is ready!!! This is what I tell my patients: you are about to embark upon a journey that will take you many places....but you cant start that journey until you take that first step.. This Andic is the first step into a new journey for you. Dont take 2 or 4 or 10 steps, just one. get this ICD put in and then we will look at step two. Next thing you know you will have perfect valves and good readings and will be wondering what is next cause life is just so easy. Every day is a blessing, enjoy life as best as possible because God blesses us with it and some times those blessings dont come.
sorry hope that wasnt too sappy or wierd or whatever.. sort of in a funk.. Was a nice trip down memory lane though.