Posts Tagged ‘Support Group’

Awareness vs. Assistance

February 11, 2010

Every week is CHD Awareness Week for me. – Fellow Survivor on Twitter

Awareness of Congenital Heart Defects is the focus of the week, but what happens next? Hopefully we can convince mothers to be to give up any bad habit they may have and take better care of themselves, but too often there is no way to predict a Congenital Heart Defect (CHD). Most people feel genetics and environment combine to cause CHDs, but no one knows what the proper mixture is or what triggers them. It is so random that there is really no template – just a number. On average, 1 in 125 children are born with a heart defect.

And that’s when awareness isn’t what’s needed. We already know what a CHD is because the doctor just told us our unborn child has one, now the question in our minds is Oh God, what happens now?

That’s where groups like Broken Hearts of the Big Bend come in. They are the classic support group – folks who have been there before. They’ll be right there, holding your hand. Watching the clock with you during surgery. Another parent will be able to sit down with you and tell you what to expect, because someone in their family has the same type of problem with their heart. They know what it feels like to Walk the Hard Path, because they’ve all gone down that road themselves.

And they hold events like the Regional Forum, too;  so that their members can gather and talk to heart doctors over the course of a day, and not in the rushed environment of the doctor’s appointment. And they ask people like me to speak, because I’ve been there, too – but as a patient. I see things from a little bit different angle, and perhaps I can allow you to stand in my shoes for just a little while.

A support group is not a guarantee – no one can say “Do this, this, this, and the other thing and everything will be fine.” But they can help tip the odds in your favor. And you’ll have an advantage over my generation: we all thought that we were THE ONLY ONE. No support groups, no internet, and no clue that the CHD survivor family was slowly growing, because each one of us was in our own personal little hell. There is no one else like us – what did we do, God?

I hope you have made plans to attend. Because you aren’t alone. I plan to be liveblogging, so even if you don’t live in the Big Bend, just keep checking Adventures of a Funky Heart! on Saturday.

I don’t mind a bit if you look over my shoulder.


We’re all in this Together

November 22, 2008

You’re having a rough week.

If having a Congenital Heart Defect isn’t enough, you’re dealing with all the problems that can occur as a result of your defect: Having to watch your diet all the time. You can’t run and play with the other kids. Having to take a dozen pills every single day. The side effects of all that medication. (I’m pretty sure that my medicine gives me weird dreams.)  The doctor taking a long pause before he gives you your test results… that’s usually a BAD THING right there. Getting out of bed and making it to work on days that you feel like death warmed over. The guy in the next cubicle sneezing and sniffling, while you hope that he’s just got allergies, because a cold puts you in bed for a week.

And dealing with people who just don’t get it, because they are as healthy as a horse and have never even been in a hospital, except for that time when their Aunt Emma broke her leg. It’s frustrating and maddening and it makes you want to punch the wall. It feels like you are climbing Mount Everest, because it never ends.

You’re right… you are climbing Everest. It’s the biggest challenge you’ll ever face. But just remember, a lot of people never make it to the top of the world’s tallest mountain; they get close but have to turn back. For one reason or another, the journey is too much for them. And just remember, these people who always seem to be giving you unsolicited (and useless) advice… they may have climbed a few hills, but they’ve never done anything like this. So you have my permission to politely ignore them.

And any time life starts getting to you, any time you just feel like you HAVE HAD IT UP TO HERE!, go to your Congenital Heart Defect support group and tell them all about it. Vent! (but don’t whine!) Just empty yourself out. We won’t mind, and we certainly understand. You see, we’ve all been there before. We’re all experienced mountain climbers, and we’re more than happy to throw you a rope. Because next time, you may have to throw us a lifeline.

So how do you climb Mount Everest? You do it one step at a time.

Don’t just survive, THRIVE!

October 24, 2008

Live your life.

That’s probably the best three words of advice I can give you. You (or your child) has a Congenital Heart Defect. Certainly there will be times that care has to be taken, adjustments have to be made. With a bad heart, you must take care of yourself first. Don’t volunteer to be on the “tote and load crew” and don’t let anyone volunteer you for something that you aren’t capable of doing. Sometimes you have to use a little trickery; when I worked at the museum I’d always volunteer for a job “if someone will help me.” When I got tired, I’d say “Hey, you look a bit tired, let’s take a quick break so you can catch your breath!” (Sneaky, huh?)

You have a Heart Defect, but the defect does not have you. Never give up and never give in. Exercise will build your stamina and allow you to do more later. Don’t have an exercise program? Talk to your doctor. Personally, I walk. Start at 15 minutes a day and walk until you are used to walking that 15 minutes. The next day, walk 20 minutes. Increase your time every few days – you’ll feel pretty tough those first few days, but after a while, you’ll feel your extra stamina kicking in when you need it. (Don’t take medical advice from me, since I’m not a doctor. This is what works FOR ME. Ask your doctor’s advice!)

Get involved. Find a good Congenital Heart Defect support group and participate. Share your story – who cares if you stumble and stutter at first? The more times you tell it, the more comfortable you will be. Be there for others when they are going through a rough time. Stand duty in a hospital with a family that needs your support. Volunteer to stay while they get lunch or some much needed rest. Support one another in person and online.

Teach by example. Wear a CHD Survivor T-Shirt. Participate in fundraisers. Get a customized license plate like one of my blogger friends has: HRT MOM. My friend Rachel has it right: “I’m a heart warrior!” I LOVE THAT PHRASE! I think that from now on, I’ll refer to adults with a Congenital Heart Defect as Heart Warriors. We fight battles that you can’t even begin to imagine!

Encourage research. Write your Representative at all levels of government. Make sure CHD issues become a priority. And hope for the day when all Cardiac Kids, Heart Moms and Heart Dads, and Heart Warriors can say, “There will be no more like us.”

Deja vu… all over again

October 14, 2008

You might have seen this video before.

I originally posted this video back in late August, when there were about 3 people (including me!) who read Adventures of a Funky Heart. Now that we’ve grown, I’m running it again.

Heart Moms and Heart Dads, YOU need to watch this very short video. I know that I tell you “This is important!” or “Click here and read this important link!” a lot of times, but this one probably tops them all. It will especially come in handy if you ever feel that you and your Cardiac Kid are all alone in the world, and you’re waiting on the other shoe to drop.

Did you see that? Over One Million adults with heart defects. And there are about 885,000 children living with a heart defect, too, and medicine is improving all the time. A child who has Congenital Heart Surgery today has a 90% chance of reaching adulthood.

The odds are very good that your Cardiac Kid is going to grow up and live a happy life. But this is your child, and I am sure you worry. I bet you already catch your breath when the phone rings and he/she is not around. I’m sure you already dread that middle of the night phone call… nothing good happens in the middle of the night. But with good cardiac care and good fortune, this doesn’t have to happen. That unexpected phone call will be your Cardiac Kid screaming SHE SAID YES! in your ear.

Until then, you owe it to yourselves to find a good group of CHD families and patients and get involved. I say a “good group” because groups can be toxic, just like people. When I went to college a local CHD group was recommended to me by my new Cardiologist, and I attended a meeting. Everyone who spoke had a tale of woe… it was almost as if they were saying “I’m sicker than she is!” I knew two things about my heart at that time –  I have a heart; and it doesn’t work so great – but I had just managed to graduate high school and was 200 miles from home attending college, for crying out loud. I didn’t want to hear “We’re Doomed!” repeated over and over. I never went back.

So find a GOOD CHD group: No whining allowed! (“Venting” is different from whining. Whining is a general “Woe is me!” attitude. Venting is more of a “This is unfair and it makes me angry! How can I change it?” mindset.)

What will a good CHD group do for you? Just watch:

So take a little friendly advice and get involved. Because there is someone out there who thinks they are in this all by themself. Show them they aren’t.