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

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Amiee
Regular Member


Date Joined Oct 2005
Total Posts : 101
   Posted 11/30/2005 2:19 PM (GMT -7)   
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
 

Patoolla
Veteran Member


Date Joined Aug 2003
Total Posts : 525
   Posted 12/1/2005 2:51 PM (GMT -7)   
Oh I'm so sorry your are having so many problems Aimee and at such a young age too!  I don't know a thing about this type of problem so I can't make any suggestions.  But I wonder if maybe you need to change to a different cardiologist!  I would think there would be something they could do that would help you more.  My Prayers are with you.  I hope someone here can give you more insight on this!  Hugs, Pat
 
 
 
 


Amiee
Regular Member


Date Joined Oct 2005
Total Posts : 101
   Posted 12/1/2005 3:37 PM (GMT -7)   
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

Patoolla
Veteran Member


Date Joined Aug 2003
Total Posts : 525
   Posted 12/3/2005 2:47 PM (GMT -7)   
Oh I think that's great that you are going to see a new cardio doc Amiee, and a woman too!  Personally I feel more comfortable with a woman.  Be sure and let her know how down you feel, it isn't uncommon to get depressed when we are dealing with health problems.  An anti-depressant may be helpful.  And keep posting here too!  It helps to know that we have someone to talk to about this stuff!  Wish you the best at your next appointment with your new doc!  I have goooood feelings about it!  yeah Hugs, Pat

deltacece
Regular Member


Date Joined Aug 2005
Total Posts : 95
   Posted 12/3/2005 5:46 PM (GMT -7)   
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

tool
Regular Member


Date Joined Nov 2005
Total Posts : 27
   Posted 12/6/2005 8:31 AM (GMT -7)   
My thoughts and preys are with you. I have been diagnosed with costochondritis here, its like a heart attack only its 24/7. and than you get the anxiety from that on top of it. It really scare the BEEP out of me.

Im so sorry to hear about your condition. My thoughts and preys are with you. Take care. feel free to email me or add me to msn whatever pleases.

keep in touch girl

Grantly

Amiee
Regular Member


Date Joined Oct 2005
Total Posts : 101
   Posted 12/7/2005 1:16 AM (GMT -7)   
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

Patoolla
Veteran Member


Date Joined Aug 2003
Total Posts : 525
   Posted 12/7/2005 11:31 AM (GMT -7)   
Yippie Amiee!  It makes such a big difference when we like our doctors!  Sounds like your new one is great!  I'm glad the new med is helping too!  Its hard not to be depressed when going through this stuff and it has to be especially hard when your just 14.  But hang in there and try to just take a day at a time.  The future is overwhelming and uncertain for everyone right?  Hugs, Pat
 
 
 
 

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