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,

Saturday, May 2, 2009

A Bit About My Journey

Hello Everyone!

My school semester is finally over and I have four months off. Yay!

I’ll be posting about a quick sum up of my journey along with how my journey has led me to CHD Awareness and connecting with other CHDers.

The list below is a summary list of all I’ve been through so far:
-2 open heart surgeries (age 4months and 2yrs)

-2 heart catherizations (age 3months and 2yrs)
-3 eye muscle surgeries (age 15months, 7yrs, 20yrs)
-one bout of RSV which landed me in the hospital (age 5months)
-one blood clot (in my right leg) during 2nd heart cath., stayed at hospital for 3-4 days
-eye patch therapy for a few months before age 1
-4 stitches in bottom lip, right side (age 8yrs.) from getting hit by a swing
-bad case of chicken pox (age 10yrs)
-minor case of walking pneumonia (age 13yrs)
-diagnosed with scoliosis at 13yrs
-diagnosed with SVT’s (Superaventricular Tachycardia) at age 18 (I’m on beta-blockers for it)
-over a dozen medications in my lifetime so far, though I'm only on 3 right now
-at least 30 cardio appt. that involves EKG, Echo, a meet with the doctor, and every other year since I was 13 a stress test

-having my blood drawn more than a hundred times
-on and off migraines since at least 4th grade (they can get pretty bad)
-I've done a few holter monitors in my lifetime and one event monitor

This journey hasn’t been easy, but I’m ever so grateful to be here. When I was dignosed with SVT’s I felt like I needed to share my story somehow, give support to others, and spread CHD Awareness. It took a few more years for me to find carepages, then find the courage to start a publice blog. I’m part of a few CHD organizations. The first is the Adult Congenital Heart Association, it is an awesome place to talk to CHDers my age who “get it”. They have forums were you can talk and the great part is, it not just for adult CHDers it’s also for CHD parents.

Speaking of people who get it, one of my closest friends in college (same is age as me) has a CHD as well. She has Pulmonary Atresia and is doing well. She is going to be a teacher and a great good one, I know it. It is great to have someone like her, but I want to stress to CHD parents that we CHDers wanted to be treated as “normal” as possible. We don’t want to be defined by our CHD alone, yes it is a big part of who we are, but we want to fit in to the extend of being treated as equally as our condition allows us (did that make sense? I hope so).

The second organization I’m part of is called Hypoplastic Right Hearts. It is for CHD parents with a heart kid with HRHS which can be defined as many different indiviual defects, like mine. I believe I’m the only CHD that is part of the group, but I enjoy it. I don’t always get a chance to read posts and post myself, but I try. They have seasonal news letters that go out by e-mail (once you join you can receive it) and I have my own column called “Heart to Heart with Lauren” were I answer CHD parents questions about living and having grown up with a CHD. I enjoy doing this very much, though I always stress that my answers to the questions are purely based on my experiences alone and that every CHDer is different.

The last organization I’m part of is called: Heart of Hope SE (South Eastern) MI (Michigan). I have spoken at one of there events already as I’m the oldest CHDer in the group. I enjoyed doing this as well. I love seeing kids just like me thriving, but I also hear sad stories to. All the CHD angels are my heros and they give my strength and motivation to keep going and spread CHD Awareness.

I hope I haven’t lost any of you yet, if you got through all of this, “Thank You”.
I’m going to end the post here tonight. Next post I will share more about what my life is like right now.

Till next time… May God Bless, Comfort, and Guide you on your journey.

With LOTS of Hope, Love, and Faith,