Hello! i'm 14 with dextrocardia!! and fed up... big time!

Hello... my name is Amiee and i'm 14 years old.

 

I was born with a heart condition called dextrocardia (for those who don't know what it is.. it's where my heart is in the wrong side of my chest).  This is causing me loads of problems, i have to take all sorts of tablets and things, like warfarin, digoxin, amiodarone and others.  I've had 3 ablations in total, first one 7 burns, second one 14 burns and 3rd one 26 burns, it was horrible and now i have a pacemaker which does help get rid of some of the horrible rhythms.  I was also diagnosed type 1 diabetic in August.. as if the heart thing wasn't enough!

 

Anyway, my problem now is that i'm loosing blood because of my heart (i think), i wanted to know if anyone has the same problem as me? i am a regular at the hospital, i keep needing blood transfusions, and even the doctors don't know why!! i'm very fed up with it, this heart thing is getting to me.. i get tired all the time, out of breath and i look blue.. like a smurf!!

 

ok, i've had my moan!! just wanted to know if anyone was in the same boat as me.

 

Thanks

Amiee xx

 

Hi Pat!

 

Thanks for replying, i am soooo fed up, i've had enough... i have not done a full week at school for ages! most kids would love that, but not me, i just want to be normal and ordinary! wierd eh??  I have been referred today to a different cardiologist.... hopefully she will help me more.... i really really hope so.   i have lived with dextrocardia all my life and just learned to deal with it, but now just wish i could get rid of it!  i have to have 2 more units of blood...again next week, might aswell just move into the hospital!!

 

Thanks again

 

Love Amiee xx

AMIEE, I BET YOUR AN ANGLE. SO SORRY TO HEAR YOU HAVE ALL THESE HEART PROBLEMS. I THOUGHT MINE WAS BAD BUT YOU GOT ME BEAT. I DONT KNOW ANYTHING about YOUR PROBLEM, AS PATOLLA SAID KEEP POSTING , IT HELPS TO HAVE SOMEONE TO TALK TO. ILL KEEP YOU IN MY PRAYERS. NEVER GIVE UP YOU HAVE MANY YEARS AHEAD OF YOU, AND LIFE IS WONDERFULL. PROGRESS IS BEING MADE EVERY DAY IN HEART DISEASE AND THE PROBLEMS IT CAUSES. SOME DAY WE MAY BE ABLE TO PICK A NEW HEART OFF THE SHELF AND CHARGE IT TO A CREDIT CARD. HA!! JUST HANG IN THERE AND KEEP IN TOUCH. DELTACECE

Hello!!  i saw a new cardiologist.... she is sooooo nice to me, i had to have a 24 hour ECG thing... i've had loads of them! and it showed loads of nasties up! my heart keeps changeing rhythm all the time, its very very wierd!  i am on a new drug now, and guess what? its helping! hopefully i will get some colour back, and look pink for a change instead of blue.  I cant help sometimes but feel a little bit depressed about my condition, i just wanna be like my friends, but i cant and never will be.  I know i will be having more operations soon, but i will deal with them when i have to, i just want to be a bit better so i am not tired and out of breath all the time. i'm 14 and i want to do what other 14 year old girls do... and i'm determined to try!

 

Love Amiee xx