About This Blog

To celebrate my 40th birthday in April and the fact that I'm actually able to celebrate my 40th birthday in spite of having had three open-heart surgeries to correct Tetralogy of Fallot,I'm running a 5K this year. I wanted a way to share that journey and possibly encourage others. Hopefully other Adults with Congenital Heart Defects or parents with children with Heart Defects will see this as encouragement that a diagnosis of a Congenital Heart Defect is not the end of the road but just the beginning. Also, I've hit some roadblocks along the way and it's time for some accountability. It's time to get off my but's.

Tuesday, March 1, 2011

So...about those plans

First of all...I am still going to run a 5K this year.  It's just not going to be for my 40th birthday.  My "last" nephew's baby shower is that week-end and I've been given the opportunity to not only attend that, but see my cousin who shares the same birthday as me and her family for the first time in years.  My choices...party like a rock star or run in a 5K.  Decisions, decisions, decisions...

And, my schedule this semester has been super crazy. 

And, we actually had a couple weeks of winter where I didn't want to venture outside for a second never mind trying to run in it.

And, I'm trying to get over my second bout of upper respiratory stuff which for this little heart patient = no running.

So, Monday, March 7, 2011 begins spring training.  There are a couple of 5K's this year on a little bit easier terrain and with more meaning to me personally.  And I plan on being prepared for Master the Mountain 2012 for my 41st birthday.

No....more....beating....myself...up!  I'm going to do this.  Just not yet.

Thursday, February 10, 2011

Survivor of Congenital Heart Defects

I have tons of experience telling my story about recovery from addiction, but this will be the first time I've ever told my heart survival story.  Most of the time people see my scar and ask and I give a short, well-rehearsed speech about how I've had 3 open-heart surgeries because I was born with an underdeveloped heart and I'm in pretty good shape these days and by the time I need another open-heart then by that age all my friends will be having them.

Really...that doesn't cover it....at all.  But who really wants to hear about the heart caths, the postponing of the first surgery, the growing up and not being able to keep up, the making of the decision not to try to have kids, the third surgery and all the fun since then?

Like my story about my recovery...a lot of this is second-hand.  I mean, come on, how can I possibly remember having my first heart cath at 4 months old?  I was a blue baby, but it wasn't until I was 4 months that they had to do a heart cath and found out about my Tetralogy of Fallot with Pulmonary Stenosis.  Or in my world today TOF.  My mom used to tell the story about me standing up in my crib and screaming at the top of my lungs while they took me away.  The doctor told her I had a strong spirit and would eventually be fine.  Or as I like to refer to now...I'm too mean to give up anytime soon.

My parents then had the dreaded talk with the doctors with the surgeons on one side and the regular docs on the other with the surgeons saying "YOU MUST OPERATE NOW!!" and the docs saying "YOU MUST GIVE HER A FEW YEARS!!"  I can't even imagine.  They elected to wait because a funny thing happened.  There's an artery in babies that go up into their neck and then when you're born or close to being born it goes away.  Mine stayed.  So I had a little by-pass that kept me going.

Now, I still had no air and I still passed out and ended up at the ER a lot.  But I grew and became your average sized five year old and they started making plans for the first surgery.  Only I got some weird blood disorder which postponed it a few times.  The last time I was already in the hospital ready to go and they decided to wait.  Apparently having surgery postponed at the last minute is just as annoying for a five year old because I threw another colossal fit.  (hmmm...pattern?)  But they finally did it a few weeks later.  All I remember from number 1 was that the hospital was being completely re-done so I had to sleep in a crib in the baby ward.  And my mom had brought me some bubble gum flavored toothpaste.
The story from the first one was my grandma called to check on me the day I got out of  ICU and my mom said "I can't talk - she's gone" and hung up on her.  Grandma heard "Gone" as "Passed Away" and freaked out.  Mom meant "Gone" as "Disappeared" and hung up to go find me playing in the play room.  (Children's hospitals rock!)

My second one was my 12 hour one.  I was 8.  My first conscious thought was "Why are you poking me?  I'm sleeping really well!" But 12 hours on the heart-lung machine are bad news for brain function so they were doing neurological testing.  I remember hating the oxygen mask...which carries through to today but I like it better than the stupid canula.  Just saying.

Then that was it for awhile.  I got older, stopped having to go to the doctor every 6 months, struggled through sports, got a waiver to keep me out of PE.  Then hit 18 and became active enough with boys that we had to make the decision about birth control.  The general consensus was NOT a good idea so at 18 got my tubes tied.  Through all this I got a lot of cases of bronchitis and my senior year my lung collapsed twice.  Two years later we found out that I really needed some repairs to my heart.

Which led to surgery number 3.  Here's where it gets crazy.  The key to surviving open-heart surgery is your blood has to clot.  Alcohol thins the blood.  I managed to get drunk two days before the surgery.  I knew going in to the deal that I had seriously screwed up my chances of survival.  Before the meds kicked in I thought "Okay, God, here's the deal.  Either I live and there's a reason for me to be here or I'll see you soon."  My next conscious thought was "I could take a deep breath if you'd take this stupid tube out of my throat." and then I threw up.  This was in ICU a couple days later.  And I'm typing this, so, I guess we can all agree I made it.

Since then, the hearts been doing pretty good.  I'm on a schedule with my doc, pop in and say high in the spring, have an echo and a holter monitor in the winter.  Go over the fact that I'm not exercising enough.  And re-schedule for the next time.  A couple of years ago we discovered I've sprung another leak.  But it's not bad enough to be serious and in need of repair any time soon.  Yay!!  Although, I'm sure the day is coming and since I'm on the verge of 40...which is a whole other post....I will be at the age when all my friends are having one.

And to the doctors who told my parents that if I didn't have the surgery right then I would be dead by the time I was three.  You....were....wrong!!!  Never underestimate the power of a hard-headed baby and parents willing to do whatever it took to keep her here.

Thursday, January 27, 2011

The Best Laid Plans...

Thanks to the beginning of the semester and a flu/upper respiratory infection/bronchitis/pneumonia bug that's working it's way around work, I've managed to work out twice and run not at all in the last two weeks.  To say I'm frustrated is an understatement of epic proportions.  But it's not just in this area that I'm frustrated, so I could say that I'm pretty well balanced. 

But I'm taking antibiotics and decongestants and I can actually breathe now, so this won't last.  And my schedule will even out soon.

I sat down last week and made several mini-goals.  Where I want to be health wise in a month, three months, 6 months and  a year.  There's still time to accomplish the one month goals so I really need to chill out and quit beating myself up.

But maybe that's the point.  If I get myself on track...what will I beat myself up about then???

Wednesday, January 12, 2011

Exercising in a Small Town

I live in a small town.  It's a wonderful place to live and I have family and friends here.  I have a wonderful job and church and I absolutely love it.

But it's a small town.  Not like, Mayberry small.  But small enough that we don't have a variety of places to do much of anything.  For example, if you're going to shop in town, your options are the mall or Wal-Mart.  If you're going to see a movie, we have one movie theater with 4 screens.  If it didn't come out 5 minutes ago, you're going to have to drive to a nearby city.

And when it comes to exercising your options are limited too.  We have a Y.  We have a 24 hour place that is absolutely awful (I seriously almost spelled it offal).  And we have the Fitness Center at our sister campus (I work at a community college for the deaf - our sister campus is a regular community college).  But the Fitness Center has been closed for several months for renovations.  I'm not a fan of the Y.  I loathe and despise and generally hate the 24 hour place....if I'm going to pay $50 a month, could you at least have one working treadmill???  So I've been kind of cobbling together an exercise plan utilizing the little bit of equipment I have at home.  And then the track at the high school.  Which is kind-of hard to do when there's no light past 6:00 pm and the high for the day is 30 something.  It doesn't happen often, but when it does it's not easy to convince myself to get my booty out there and try to walk/run.

So this has been my problem.  Until Monday.  The Fitness Center has re-opened.  And I'm in love.  So Monday I went to check it out and exercise.  I am now up to almost 2 minutes of jogging and I walked for 25 minutes.  I feel like a rock star.  Their new hours are great.  The new equipment is nice.  They've fixed the heating and air conditioning so it'll be warm in the winter and cool in the summer and not the other way around.

So, you hear that?  That's the sound of my last excuses leaving the building.

So now if I don't work out...it's just me.   

Friday, January 7, 2011

Seriously

I'm seriously going to do this.  I WANT to run.  I do.  But I don't think my goal of running a full 5K by my birthday is realistic.

First of all, It's 14 weeks away and I just missed a full week of walking/running because of circumstances beyond my control.  And I'm up to 97 seconds of jogging in 20 minutes of walking.  I'm making progress.  My first time was 54 seconds.  But it's going to take me several months to get built up.  So there is no way I'm going to be able to run a full 5K for my birthday in April.

So I've been wavering back and forth between going ahead and participating and just running what I can, because it is a Fun Run/Walk and it would still be a step in the right direction or not doing it at all and finding one later in the summer, like competing in a 5K for my 16th sobriety birthday in August.  But not doing it at all is a cop out.  One that I will not let myself take. 

So I just realized what I need to do....Set the goal of competing in the Master the Mountain for my 40th birthday and running as much of it as I'm ready to and then running a full 5K to celebrate my 16th sober birthday.

I feel better already.

Friday, December 17, 2010

Day 1

Thursday, December 16, 2010 - Day 1 of Preparing for Master the Mountain

Runners don't laugh at me.  I'm a heart patient, I'm almost 40 years old and I haven't ran since maybe the 5th grade. 

Walked a brisk pace for 5 minutes
Jogged for 32 seconds
Walked a brisk pace for 5 mintues
Jogged for 33 seconds
Walked a brisk pace for 5 minutes
Jogged for 32 seconds
Walked a brisk pace for 5 minutes

Walked a total of 1 mile
Jogged for 97 seconds.

Go me.