New to the group

Hello,
I just wanted to pop in and say hi to everyone. I just joined this group, well, because I have recently been diagnosed with dilated cardiomyopathy. The real kicker is I'm only 30 years old. I'm a stay at home mom of two great boys-they're 3 and 5. The docs say that they do not know why I have this 'condition' other than genetics and another unknown cause. My oldest son has Tetralogy of Fallot with Pulmonary Atresia and has had surgery a while back. He's been a huge source of support in his own little way even though he has no idea that my heart has taken a complete nosedive. I kind of figured that I'm still in a state of shock from all of this and need to be a little more proactive. I really hope to meet some others who are going through a similar situation.
My entire family is flipping out and treating me like I'm going to die at any given time. It's crazy because I just feel tired and a little out of breath sometimes. The doctors have told me that my heart's pretty bad and can't explain why I don't feel as bad as I should-I like to think that means I'll have a miraculous recovery soon :) What can I say-I'm a positive person!
Thanks,
Tanya

By martzj
Posted August 10, 2009 at 6:05 pm
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Hi Tanya,

Welcome and what an adorable family photo!! Too cute!! : )

" It's crazy because I just feel tired and a little out of breath sometimes. The doctors have told me that my heart's pretty bad and can't explain why I don't feel as bad as I should"

THere are other women your age in similar situations and I'm sure you will hear from them soon. The tired is what I call 'heart-tired', which is different from 'tired for good reason' and 'will be just fine after a good night's sleep' tired. Great, truly great that you aren't experiencing this as overwhelming and 'suffering' all the time. This bodes well for you and will give you time to develop all sorts of coping strategies down the line.

This is a wonderful place to come and talk about the things your family may not be ready (ever) or able (ever) to hear. Positive attitude is terrific. So is a practical, realistic approach....which heart girls need to develop with a house full of little boys! (been there)
Lots of great tips on how to manage from the amazing women who show up here. No subject is off limits. If it is a problem for your heart life, feel free to bring it here.

Take good care and hugs to those cutie pies of yours,
Jaynie

By grace5
Posted August 11, 2009 at 6:07 am
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Hi Tanya, and welcome. Love your attitude, it's so important to stay positive, the best thing you can do in my opinion. Your family is doing pretty much the same as I would if it was my son or daughter in your shoes but I can understand how it makes you feel.
As Jaynie said, this is the best place to learn, offload and share, although you have your hands full with your beautiful boys and little time to sit in front of a computer I guess!

Hugs Lidia xx

By Misty1482
Posted August 11, 2009 at 1:54 pm
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Tanya, first of all let me say welcome. You have come to the right place. As Jaynie said there are younger woman like you with heart issues and I am one of them. I found this place a few months ago and I love it. Best place for any kind of support you need.

Definitely keep the positive attitude. Families only know what they are told and once they hear heart problems, they freak. Mine did. I'm now 27 and coming up on my 1 year anniversary from a heart attack. I was 35week pregnant at the time. Long story short...5 days after the HA they rushed me into emergency c-section and triple bypass surgery. They saved my life. The doctors said I should not be here. I have an energetic 8 year old boy and a beautiful 1 year old girl(well she will be one on Aug 21st). Best things of my life and I wouldn't go back and redo any of it especially knowing what I would have to go thru. They are blessings to me. My family still freaks sometimes when I come back from the dr and tell them, nothing has changed. Which is good in a way because nothing has gotten worse. I have an ejection fraction of only 25% but they are still hopefull it will come up. I also have a defibrillator. If you can exercise that might help with the tiredness. I dont know anything about what your condition means, so I really cant give any advice on what to do about it. But I would say definitely keep positive. The doctors said its one of the main reasons why I'm still here after what happened on aug 16th. I had a massive heart attack...they said I had an anyursym that exploded due to the stress of the pregnancy and it caused a tear in my valve. Well the blood started flowing thru the layers and luckily the outside layer was a little tougher and did not tear. If it had I would have been a goner...they would not have been able to do anything for me. Said my case was 1 in 30000 people. Very rare. I find that keeping myself busy keeps my days going by. I try not to make them too fast. I cant believe its been a year almost. But keeping your head up and keeping those young boys of yours busy will definitely keep you going. I know its more like they keep you busy...lol.
Gotta love the positive-ness in your letter. Its amazing at what it will get you. I'm sure you will be hearing from lots of others, some with advice and some just to say hi and welcome. Like Jaynie said there is hardly any topic off limits. Ask away and we will do our best to help support you.
Best wishes and keep us updated, Misty

By Winglover
Posted August 11, 2009 at 11:29 pm
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Tanya,
Welcome to Womenheart! My 16 yr old son was diagnosed with Dilated Cardiomyopathy last May. So far his EF has remained 20%. He too looks and feels better than his echo shows. I am blessed that he has kept his positive attitude like you. He is just glad to be home, able to go to school and says "thank God I don't have Cancer". I am the worrier like all families do when someone they love has something you just don't understand. Just keep asking questions. You should find a lot of support here. Stay positive!
Lisa

By AZMommy
Posted August 12, 2009 at 12:56 am
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Thank you all so much for the warm welcome!!

Lisa~I almost had tea come out of my nose reading your post! I had some lab results come back today from a liver biopsy and the doctor told me all was well it was just congested from my heart failure and my reply was, "Thank God all I have is a heart problem and not cancer!" I went into the hospital to have my gallbladder removed and through the chain of events they discovered my poor enlarged heart...lol.
And Misty,
You seem sooo strong! My EF is at 20% but I like to think that in two weeks when they check it again I will be miraculously healed! The docs told me to quit my job and absolutely no jumping on the trampoline or playing freeze tag with my boys anymore. I'm not even supposed to walk out and feed my stinking chickens! I have to admit that I'm not up to playing tag but the trampoline is too much fun-I just have to let my kids bounce me around for a change-lol.
It is a huge adjustment for me. I was so used to always being on the go and playing with my kids and now I get exhausted giving my kids a bath or cooking dinner for my family. Thank God that my husband and I moved in with my in-laws a few months ago (thanks to our wonderful economy!). I don't know what I would do without my mother and father in law-I'm really lucky because we actually love each other and enjoy one anothers company.
Happy early birthday to your baby girl! I was told that under no circumstances was I to ever get pregnant again...so, I will never get to do pigtails and pink party dresses :( I guess I'll have to settle for mud and lizards in the pockets!
Thanks once again for the welcome. I'm sure that if I ever accept this pain in the rear thing with my heart, I will eventually have some questions pop up that might need answering...until then I'll be here mainly to vent about the annoying wires I'm having to wear for the next month and how my husband is afraid that he'll give me heart attack if we have sex...good way for me to go, I guess but it might be a tad bit scarring for him-LOL.
Tanya

By nanamo
Posted August 12, 2009 at 7:00 am
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welcome,

you have found a wonderful loving site and i love that your so energetic and not letting this get to you i have lived with chf for 10 years now and i believ we have to live and be postive about this disease yes it kills but we have the power to control it as much as we can then the good lord will do the rest
but welcome and god bless

god bless
surviving heart disease one day at a time
with trigger 04/08
for 10 years
nanamo

By Marietta
Posted August 12, 2009 at 8:52 am
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Hi there - welcome to WH and welcome to the young women with heart disease club....lol. No...it's not funny but we have to keep the positive going, right? I had my first MI at the age of 32 and my children were just 6 & 7 at that time so I certainly know how you feel. Just when you think your life is perfect and you are enjoying your...wham...you are smacked in the face with heart disease. But...we are WOMEN....we are mothers...we are wives...we are daughters....we are fighters...and we are SURVIVORS! Being part of this club is not what I had in mind when I was a young girl but now that I am a part of it ...I'm going to be the best member of it that I can be and with the help of WH and the wonderful women on here and the ones that I have met in person...it's so much easier to be a member of the "young women with heart disease group"

By Patybluetx
Posted August 12, 2009 at 11:18 am
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Welcome! Well I too am one of the ones that are young and with cardiomyopathy issues. I actually got chf while I was 9 mos pg so it was a little extra complicated and very painful to deal with. When I got out of the hospital my EF was 10-15% I followed a low sodium, low fat, low cholesterol diet (which I still follow b/c I'm too scared to get off it) and was on a liquid restriction (which was way tough and I was so glad when they took me off of that). I felt so helpless for the longest time b/c they told me that b/c of my c-section and chf combo I couldn't lift anything above 5#s...not that I had the energy to do so but still being told that was frustrating. Because my daughter didn't make it I not only had to deal with everyone treating me like I was going to drop dead in front of them (so I know what you're dealing with there) but I also had to deal with everyone and they're mama trying to diagnose me with post-partum depression and trying to shove antidepressants down my throat. Yes, I dealt with depression who wouldn't be depressed after all that? But I was positive that with therapy and just letting myself work it out I'd be able to fight it drug free (I had enough drugs in my system as it was, I didn't need another pill to take care of!) and so with determination and the right attitude (and a wonderful husband!!) I got through it and my recovery from CHF my ef is now 71% and I'm off meds :). So you're on the right path with your awesome attitude, you just need to make sure and follow doctor's orders to the 'T'! Good luck and I look forward to getting to know you!

-Martha

Oh! BTW Your boys are adorable!

By Sparks
Posted August 12, 2009 at 9:19 pm
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Tanya,

I would like to "ditto" what everyone else said on staying positive. There is a recent study in the Journal of the American Heart Association entitled, "Optimism appears to lower women's risk of death, heart disease..." I have a paper copy and if I can find it on the web, I will provide y'all with a link. Basically, it says that "In the largest study to date on the health effects of optimism and cynical hostility in women...researchers found that optimisitic women, compared to pessimistic women, had a 9% lower risk of developing heart disease and a 14% lower risk of dying from any other cause.."

Even though the study references women who have not developed heart disease yet; it has implications for those of us who have it already.

So, keep your chin up and stay positive!

Sandra

By Misty1482
Posted August 13, 2009 at 8:41 am
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Tanya, what kind of wires are you wearing? I had to wear an outside defibrillater called a life vest for 3 months after I gotta outta the hospital. I was just wondering if you are wearing something similar. I understand your husband being afraid, mine was too. The wires didnt help any, cant exactly be "sexy" with wires hanging all over. But slowly he came to the understanding that we could be intimate without anything happening. I would just joke with him about my heart beating too fast and the vest shocking me...lol. He didnt think it was too funny at first but I kept reassuring him the docs said it was ok, and he got over it and starting laughing at the situation any time I would joke.
Misty

By Kennarina
Posted August 19, 2009 at 9:08 pm
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Hi Tanya

I'm glad that Martha jumped in here, as she is our resident expert on PPCM here.

Read these two things:

1. "A Trip Down Mommy Lane", Martha's blog about her experience and her new adventures trying to have another baby, post PPCM: http://tripdownmommylane.blogspot.com/

2. Martha's story, "Young, Pregnant - and a Deadly Heart Condition" - http://myheartsisters.org/2009/07/29/martha/

While it doesn't change your reality one tiny bit, it is sometimes a comfort to know that you have LOTS of company when it comes to young women being diagnosed with awful things. Young women, old women, it really doesn't matter because believe me, it is just as devastating for any woman no matter what (single, married, kids, no kids, money, no money, parents alive, parents dead, skinny, fat, black, white - you get my drift). Heart disease is an equal opportunity attacker.

And it does of course mean that your day to day life will be impacted. Many of us (former Type As, running around with our hair on fire) have learned that our heart attack is the only thing that has successfully managed to bring balance into our lives - it's the 'gift' of heart disease!

And by the way, what a lucky break that you had a gallbladder problem! Without it, your heart condition may not have been picked up in time.

XOXOXO

http://www.myheartsisters.org

Welcome to Inspire!

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