Hi I am new and I have Congenital Heart Disease

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Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/23/2005 12:19 PM (GMT -7)   
Hi all I was born with a CHD known as TOF w/PA and DORV.  I have had 4 colorado surgeries 77,79,82 & 2001.  I go see my card every 6 months at childrens hospital in denver.  I had a valve replacement done in 2001 and Pulmonary artery stent.
 
Take Care,
Nikki

Post Edited By Moderator (Teri16) : 5/23/2005 7:20:11 PM (GMT-6)


Patoolla
Veteran Member


Date Joined Aug 2003
Total Posts : 525
   Posted 5/23/2005 1:07 PM (GMT -7)   
Hi Nikki!  I just wanted to say welcome and hopefully, someone familiar with your CHD will be along soon!  God Bless, Pat

Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/23/2005 5:56 PM (GMT -7)   
Thanks me also.
Patoolla said...
Hi Nikki!  I just wanted to say welcome and hopefully, someone familiar with your CHD will be along soon!  God Bless, Pat

Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/23/2005 6:19 PM (GMT -7)   

Hi Nikki and Welcome to the Cardiac Forum of HealingWell!!  We're very glad you are here!   yeah  

So you have (CHD) Congenital Heart Disease. TOF (Tetralogy of Fallot) with (PA) Pulmonary Atresia and (DORV) Double Outlet Right Ventricle, which is really very rare!?  Nikki, you have been through the works!!

How old were you when you had your first surgery?  I know that there are a few that are done to correct the TOF!  Was that the aortic valve you had replaced??  And I can sort of tell why the Pulmonary stent was placed, but perhaps you might tell us and share a bit of your life's experiences with this heart defect and explain please the Colorado surgery, which I have no knowledge of...I'm guessing you are in your mid 20's?

I'd be very interested in hearing from you as I'm sure others would as well!!  So please come on back anytime, Nikki!!

Hugs, Teri tongue


"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/23/2005 10:21 PM (GMT -7)   
Hi Terri,
You seem to know alot about CHD, and yes it is rare all the chd I have.  Infact my Card told my mom back in the late 70's that its the worst kind he ever saw.
 
I was 5(82) when I had my first open heart, but in 77 and 79 I had 2 BT shunts done.  I had my pulmonary valve replaced with a humand aortic valve.  I just mean when I say Colorado surgeries, I just had all my surgeries done in colorado.  I had my PA stented because it was really narrow. (not getting enough blood through (stenosis).  I am 28 years old.
 
I have had lots of heart caths, I go see my PC about every 6 months.  I have no pulse in either of my wrist and my BP in my arms 9 out of 10 times reads 0.  I was a very sick little girl, they didnt expect me to make it.  I had Complex TOF.  4 other little kids went in Colorado General (Unviersity Hospital denver) in 1982 with TOF and all died, expect me I feel pretty lucky but feel sad for the parents of those little kids.
 
I have a 26 year old Brother, 12 year old brother, 9 year old sister and 5 year old nephew.  and a 3 1/2 year old "son" well he isnt my bio but I have custody of him, his parents are in prison. 
 
Thanks for the kind words.
Nikki tet_of_fallot@msn.com is my email, you can email me anytime if you ever wanna talk.
Teri16 said...

Hi Nikki and Welcome to the Cardiac Forum of HealingWell!!  We're very glad you are here!   yeah  

So you have (CHD) Congenital Heart Disease. TOF (Tetralogy of Fallot) with (PA) Pulmonary Atresia and (DORV) Double Outlet Right Ventricle, which is really very rare!?  Nikki, you have been through the works!!

How old were you when you had your first surgery?  I know that there are a few that are done to correct the TOF!  Was that the aortic valve you had replaced??  And I can sort of tell why the Pulmonary stent was placed, but perhaps you might tell us and share a bit of your life's experiences with this heart defect and explain please the Colorado surgery, which I have no knowledge of...I'm guessing you are in your mid 20's?

I'd be very interested in hearing from you as I'm sure others would as well!!  So please come on back anytime, Nikki!!

Hugs, Teri tongue


bc2
Regular Member


Date Joined Feb 2004
Total Posts : 71
   Posted 5/23/2005 10:38 PM (GMT -7)   
nikki you are one tuff lady i wish you nothing but the best yeah
ONCE A MARINE ALWAYS A MARINE
 
SEMPER FI


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/23/2005 10:52 PM (GMT -7)   

Hi again, (((Nikki)))! tongue

It's one of my nights that my mind gets overly active and I seem to go to bed late! lol

I did some nurse's training at a Children's Hospital and we learned a lot about babies with this.  It's hard as a bystander, even harder as a parent, and I could never say I know how you feel.  Perhaps you'd share that with me, or us here sometime when you feel up to it.

It's been many years and I'm sure there are many new treatments since I was in training, plus I worked in geriatrics, so you could teach me a lot!! tongue

Growing up I'm guessing was pretty rough?, or we're you so adapted to this from little on, that you accepted all the Dr.'s and Hospitals and surgeries?  I know that the BT shunts were used to get the blood flow going, as many babies and young children were called 'blue babies' with this.  Do you still take aspirin?, or heparin?  How are you feeling?!

Please feel free to come here anytime, Nikki, and post anywhere, not just on this thread!  And please, to help me out, could you use the full words, instead of the abbrieviations? lol  I knew several of them, but had to look others up! (at least til we get used to them?) tongue

You take care!!  Big Hugs, Teri tongue


"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/23/2005 11:21 PM (GMT -7)   

My life has been crazy, I had a rough time in PE, kids constatally made fun of me because I was to slow, couldnt run as fast or as long as them, was over weight.  I couldnt go to outdoor ed, I am real clumsy, I cant do more than one thing at a time, I cant drive I have had my permit, just cant get a hang of driving.  I am on SSI, cant work, feel like I have no life because I cant get out on my own, have never been married, cant find a guy, I want to know what its like to have a baby.  Want to just have a life of my own, instead of living a life with my parents.  I am 28 years old and I am not getting any younger lol.  was in special ed all my life, have a hard time learning stuff.

Take Care,

Nikki

 


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/24/2005 11:44 AM (GMT -7)   
Nikki, you said that you do have a son.  One doesn't have to "give birth" to be a Mom!  I think that's wonderful that you've taken on that responsibility. smurf
 
What do you do for fun, Nikki?  Do you garden, paint, crochet?
 
What about exercise?  What can you tolerate?  Is your weight from prednisone?  Can you just walk a bit down the street maybe?  I don't know what to recommend until you tell me what your Dr.'s have said you can tolerate.  Have they told you that you cannot live on your own?
 
You have been through what a lot of people could not have lived through.  It has been rough, there's no doubt about it...but I bet you have a lot to offer!! yeah
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/24/2005 11:54 AM (GMT -7)   
Teri16 said...
Nikki, you said that you do have a son.  One doesn't have to "give birth" to be a Mom!  I think that's wonderful that you've taken on that responsibility. smurf
 
What do you do for fun, Nikki?  Do you garden, paint, crochet?
 
What about exercise?  What can you tolerate?  Is your weight from prednisone?  Can you just walk a bit down the street maybe?  I don't know what to recommend until you tell me what your Dr.'s have said you can tolerate.  Have they told you that you cannot live on your own?
 
You have been through what a lot of people could not have lived through.  It has been rough, there's no doubt about it...but I bet you have a lot to offer!! yeah
 
Hugs, Teri tongue

Baby sit kids, hang out with my friends, talk on the phone or internet, play my game cube, swim (we have a swimming pool in back yard), go to movies, hang out with family.
I can do whatever really I just know when I need to take a break.  I am always tierd and really have no engery to excersie (which is mostly due to my lack of excersie and weight, has a little to do with my heart but not much).
My docs did tell me I can have babies, but have not ment the right somebody lol, well I am talking to this guy for the past 2 years but he is to shy to meet me lol, he has weight issues and HBP but so do I, and he knows about my heart.

Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/24/2005 12:07 PM (GMT -7)   
Well, I'm beaming!!  Good for you, girlfriend!!
 
Sounds like you are more active than I am and that's wonderful!
 
Swimming is a wonderful exercise.  If you are not limited in exercise and are overweight, how about a treadmill?  Do you have one?  Is there a reason you are not working?  How about working at a day care?  Unless you make more money doing it from home?   Or how about becoming a teacher's aide for preschool, or kindergarten?  It sounds like you love children! yeah It seems you have your Dr.'s go ahead to enjoy some life now, but to meet people you need to get out of that house and maybe even get a parttime job?!  Would your parents help with your son??, or could you work nights?  Just some thoughts...maybe someone else could help give a few of their thoughts on this.
 
Did you know that the new dietary rules suggest that we eat 2 cups of fruit per day and 2 1/2 cups of veggies?  Eat more fish & chicken and limit your red meat intake, eat less starchy foods.  Watch those snacks and desserts and perhaps that will help you to add some self confidence to you!!
 
Nikki, you rock!!  Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/25/2005 9:23 PM (GMT -7)   
Nikki, how are you doing today?! Have any plans for Memorial Day? We're just going to kick back and relax, my husband starts a new job Tues., so we're going to appreciate the days he does have off for now-might be a while til it happens again. lol Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/25/2005 9:34 PM (GMT -7)   
Teri I doing fine, thanks.  I wont be doing anything until July 1st, I am going to my family reunion.  My son is going with his grandma all weekend, I will be relaxing and cleaning lol.
Teri16 said...
Nikki, how are you doing today?! Have any plans for Memorial Day? We're just going to kick back and relax, my husband starts a new job Tues., so we're going to appreciate the days he does have off for now-might be a while til it happens again. lol Hugs, Teri :)


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/25/2005 9:47 PM (GMT -7)   
Hmmm...Relaxing and cleaning? lol No bon bons and the women's channel?! Just teasing!

A family reunion-that does sound like fun!!

You take care and keep me posted. Big Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


heartangel
Veteran Member


Date Joined Mar 2004
Total Posts : 638
   Posted 5/27/2005 9:18 AM (GMT -7)   

Welcome Aboard this family of Survivors Nicki  yuo have ben through the wringer but keeping up with everything and swimming too is such great exercise. I am glad yuo came here to open up and share yuor story with us all of us have some ort of heart disease some worse than others and sosme have family members with it too but feel free to post or -mail me or maybe even Teri too anytime and we can e-mail you bacak when we receive the message again thanks for coming aboard.

HEIDI


 Heidi
Be kind for everyone you meet is fighting a harder battle
Plato
 
 
 
Friends are angels who lift us to our feet when our wings
have trouble remembering to fly.
 
Mighty hands are guiding me to protect me
from what I cannot see
 
I am a SURVIVOR :)


Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/27/2005 10:08 PM (GMT -7)   
Thanks for the kind message.  Heidi.
heartangel said...

Welcome Aboard this family of Survivors Nicki  yuo have ben through the wringer but keeping up with everything and swimming too is such great exercise. I am glad yuo came here to open up and share yuor story with us all of us have some ort of heart disease some worse than others and sosme have family members with it too but feel free to post or -mail me or maybe even Teri too anytime and we can e-mail you bacak when we receive the message again thanks for coming aboard.

HEIDI



Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/29/2005 7:11 PM (GMT -7)   
Hi Nikki!!  tongue Hope your weekend was relaxing?!
Best wishes to you!!
 
Hugs, Teri xoxoxo
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/29/2005 8:34 PM (GMT -7)   
Yes My weekend was good.  I never did get a chance to clean.  Oh and plans have changed I am going to califionia instead of Pueblo.
Teri16 said...
Hi Nikki!!  tongue Hope your weekend was relaxing?!
Best wishes to you!!
 
Hugs, Teri xoxoxo


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 5/30/2005 11:51 AM (GMT -7)   
That's okay, Nikki Jo, those dust bunnies will wait for you to clean them when you are ready!! lol

The family reunion is going to be in California? That should be nice!! :)

Hugs, Teri :)
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Nikki Jo
New Member


Date Joined May 2005
Total Posts : 19
   Posted 5/30/2005 12:00 PM (GMT -7)   
No but my grandma, uncles, and cousins live out there.  I am going to have a break from things and visit my family.  Its such a beautiful place out there.
Teri16 said...
That's okay, Nikki Jo, those dust bunnies will wait for you to clean them when you are ready!! lol

The family reunion is going to be in California? That should be nice!! :)

Hugs, Teri :)


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 6/1/2005 5:22 PM (GMT -7)   

Hi Nikki!

Hope you had an enjoyable weekend?!  Keep in touch and let us know how you are doing!!

Hugs, Teri tongue


"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:

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