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,

1 comment:

  1. Laurn,
    I wrote you once before. My name is Ken Kopp Father of Samantha Kopp HPRH. You are an amazing woman. Your heart is stronger and bigger then anybody I know. You are truly blessed. And a huge insperation to all CHD's and Parents. God Bless you Lauren!
    Ken Kopp