Sunday, May 17, 2009

Life with a CHD as an adult

Life as a CHD adult (though I still feel like a child most of the time) certainly hasn't been easy. I look around at other people's lives and I know mine could be worse so I shouldn't complain, but on the other hand I wasn't born like everyone else. My life, my story, is one that from the outside world is unheard of, but since I've gotten involved with CHD world it IS life, OUR life. I always thought I was the only one that has been through so much and that it is so UNFAIR that this is what I have to live with, yet I've pushed through everything I've been thrown and managed to have a close to "normal" childhood (or whatever anyone calls "normal").

Anyways, I'm getting off topic, I talking about my life now not my past. I will talk about my childhood later, for now what is life like now (or the past few years). Well, it has been tough. Over the past 4 years I've been dealing with the hard reality of knowing that I'm facing the great unkown for my health. Doctors don't know what will happen, this is new territory for them. I'm still seeing a pediatric Cardiologist as those are the best of the best for me right now, they know more as of right now. That is why it is so important for more CHD research and for more doctors to specialize in CHD in adults as we are different cases then the children.

I was dignosised with minor SVT's (SuperaVentricular Tachycardia aka fast heart rate) four years ago and I'm on medication for them called Atnenolol which is a beta-blocker. It does a pretty good job of stoppping the pain, but when I'm stressed or just randomly I can get chest pain ranging from minor to pretty painful. On top of dealing with on and off chest pain, I get tired very easly so naps are a must most of the time. I have some water retetion due to some other heart medication that I'm on.

Since I've been dignosised with minor SVT's four years ago things have been tough for me health wise and mentally. It has been hard for me to cope with not knowing what is going to happen to my heart in the future and will I be prepared for it. I have turned to faith alot and I believe God will take care of me. I know that I will be able to get through whatever is thrown at me with the support of my family, friends, boyfriend, and having faith.

Despite of my downs the past four years I've had alot of ups. I'm in my third year of college and my major is Psychology. I've been blessed with getting envolved in CHD organizations and communities. I've also been blessed with a wonderful boyfriend of 6 months.

My boyfriend, Chris, and I:

My life isn't always easy, but no one's ever is. My life is defintely different then most people's and the challenges I have encountered and will aren't easy. I didn't ask to be born this way and to have this fear in me about what tomorrow will bring, but I try my best to live life to the fullest and try to be positive (I'm a big pessimist so it's really really hard), and give thanks to God. Many people think I should be angry at God or the world, but I'm not. I don't think God makes any mistakes, I was suppose to be this way, I was suppose to send a message. I have a mission to complish and I will complete it. The CHD angels and CHD patients give me strength by their smiles.

Eveyday I'm remined by my heart condition, so despite what I've been told to just act like I don't have a CHD or since I look fine or I'm fixed (which is NOT true) I can't and never will. The scars on my chest, the medication, the getting tired easliy, the doctor appointments, the pokes, the water retention; they all remind me each and every day (that and the medical bills). Though I have a CHD and it has impacted my personality and who I am today, I do like to be treated with the same respect as a normal person and not be judged by what I have. I'm just like anyone else, only with a special heart.... A mended heart.

I think I'm going to end here today, but I have more to share. I hope I didn't ramble on too much. Thank You for all who reads this blog, my carepage, send me messages, and/or prays for me. It all truly means the world to me.

God Bless and many Heart Hugs!!!

With LOTS of Hope, Love, and Faith,

1 comment:

  1. Hey Lauren! This is the first time I have had a chance to log onto your blog. Sorry it has taken me so long....I'm so involved with reading the many care pages I follow that it seems like I never get the chance to hop over here as well.

    I just read your latest blog and I want to cry! {{{HUG}}} My goodness girl it never gets any easier does it? I have so many hopes for Logan and my main wish is that he will be able to grow up feeling normal with no worries. I know that is a bit naive of me to believe that he will ever feel normal since I am fully aware of the reality of what having a chd means. As a heart mommy we know how serious our child's condition is and that they face a lifetime of challenges. However that doesn't mean that we don't hope for their life to get easier as they get older.....that they are accepted and loved just like everyone else....and that they are able to come to terms with their condition and accept it so they can live a fulfilling life as an adult.

    I'm sure it is scary for you dealing with the new heart issues and not having anyone to give you the answers as to what your future may hold.

    My advice to you would be to keep living Lauren! Live for each day and try to let go of the fear. I know it is hard...believe me I know how hard it can be letting go of that fear. I'm still trying to figure out what I am going to do when Logan actually goes to school. I think they might have to put me on some heavy medications because that day is going to be tough. He is my precious miracle and I am sure your mom feels the same way about you. She would want you to embrace life and be happy!

    Keep blogging and spreading the word Lauren. You can be an amazing voice to so many families out there and to the other chd kids following in your footsteps. They need a voice and someone they can look up to.

    God bless you!

    Stefenie Jacks