A Atrial Septal Defects story

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  All my life I had wanted to be a runner.  Whether it was on the track team running short distances or running cross country.  It didn't matter.  My first time trying to be a runner was in 3rd grade.  I ran with my peers and lots of other kids at my first track meet but I didn't make it to the end on my own.  I knew even before the halfway mark that something wasn't right.  I couldn't breathe.  My chest hurt so bad that I had to stop.  I don't know if I passed out or not, but I don't remember much.  It didn't seem to long before an adult came and found me and brought me to where everyone had finished.  I didn't run again.  I always tried on my own to see how I could do but it was always the same, short spurts and then breathlessness.  I chalked it up to being out of shape.  I played other sports throughout school.  I fell for volleyball, baseball and badminton as they didn't take any endurance.  I wanted to play basketball, but running across the court once was to much.  I rode my bike everywhere.  When I started my first job, my bicycle was my transportation.  In the summer, I was always at the pool.  I was always active, yet because I couldn't run far I always thought I was out of shape.  In my senior year of high school, I started weight training.  I loved it.  It was easy and I thought for sure it would help me get into excellent shape.

My senior year was full of all kinds of events, but what senior year isn't.  I also always seemed to be sick with something.  Bronchitis, pnemonia, mono, were just some of the things my doctor thought I had.  I always seemed to be tired and to just stick to weight training and cycling was all I wanted.  I moved near the end of summer after high school.  Started a new job, made new friends.  And then I got sick again.  Pnemonia was going around so not to take any chances, I went to the ER.  The doctor that was treating me told me that it wasn't pnemonia but that she saw something in the x-ray and wanted me to make an appointment with my family Dr.  So I did.  

It was mid October when I went to see my new Doctor.  He listened to my back and my chest and then asked me if I had ever been told I have a heart murmur.  I said no.  He said then that it was probably just that, a murmur, but he wanted to run a few tests just to make sure all was ok.  I called my parents to let them know what was going on and everyone was confident that everything would be fine.  So, when it came time for these tests, I went by myself.  

The first test they did was an ekg.  No big deal.  Hook you up to a machine with a bunch of wires attatched to connectors placed in strategic places on your body.  My first uncomfortable moments of being exposed to strangers, even though they are medical technicians.  The second test was the echocardiogram.  The ultrasound on my heart.  The woman who did my echo was gentle and as I had my back turned to her, it wasn't as uncomfortable.  I remember when she turned the sound on I expected to hear a rhythmic beat of my heart.  What I heard was a thud swoosh thud swoosh.  It didn't sound right and I got nervous.  She asked me if I had anyone there with me and I said no, that I came alone.  She then excused herself.  A couple minutes later a different person came into the room.  He explained to me who he was and he told me that I needed Open Heart Surgery as I had a hole in my heart.  I was in shock and tears streamed down my face.  He was very kind.  I don't remember a whole lot else that was said to me.  Open Heart Surgery.  I was only 18. 

I went home and called my parents.  There was a lot of shock but reassurances that everything would be fine.  As I was living with my aunt, she was aware of what I was going through and when I told her, she was very supportive.  As I was 18, I was still considered a "kid" and so went with my aunts to the children's hospital to see my first cardiologist.  It was the first meeting to determine the steps for what tests needed to be done. The planning stage. 

After that meeting, going back to regular life was different.  My co-workers teased me endlessly, easing some of my anxiety.  I had a new boyfriend, whom my aunt seemed to think was to old for me.  And then my Uncle came home and was home more than just a weekend and things got just a bit more uncomfortable. It didn't help that my aunt was starting to think about needing a nurse after my heart surgery to care for me and all the complications that could happen.  As if my anxiety about it wasn't enough.  I decided to move back home.

It was a bit of a relief to be back where I knew, yet life was different as I wasn't in school, didn't have a job and wasn't really sure what to do with myself.  I had my 19th birthday so was no longer considered a child. Now I would be with the adults treated as an adult.

We made a 4 hour trip to meet a new cardiologist and set up a date for an angiogram to determine just how big the hole was.  It wasn't long before it was time for the test.  It was to be done at the Royal University Hospital in Saskatoon, Sask.  I was fascinated by the test.  Being able to be awake and hear and feel what was going on.  I don't recall the measurements but I do know what the compared the size of the hole to.  A loonie. The Canadian dollar coin.  They explained to me how my heart is supposed to have 4 chaimbers and how mine, because of the hole, was more like just 3.  The blood was continually flowing from my heart to my lungs and back causing my heart to be enlarged and my lungs expanding and that the blood my body should be getting, was being deprived.  The Cardiologist explained to me that I didn't have to have surgery immediately, but that in 10 years I would likely develop more problems if my body didn't give out by then.  I was given the choice as to open chest or through my side.  I opted for open chest.  As I lay there recovering from the angiogram, the cardiologist brought in a team of students.  I was a fascination to them.  It was explained to me that people with my condition don't normally live as long as I have.  They each took a turn listening to my strange heartbeat.  I was no longer truly embarassed to expose my chest.  After all, how many boobs have these people seen!?

I decided to donate my own blood for my surgery. I had to take iron supplements to build my blood up faster as I would have to donate once every other week before my surgery.  And all out of the same arm.  My right side just didn't have the vein power.   We found out during this time that a family we knew had a daughter who died at a very young age of the same thing I was now diagnosed with.  She would be my age if she had lived.  There was much fascination, encouragement and many prayers.

And then April came.  It was surgery time.  I was nervous and calm at the same time.  I was now anxious to get it over with.  I had cut my hair short as I thought it would be easier to deal with after surgery as I knew I wouldn't be able to do a whole lot for 6 to 8 weeks after surgery.  So, the morning of surgery I was shown to my room.  Had to change into a gown and then wait.  They gave me something to take, but I don't recall what it was.  Mom and Dad were able to walk down to the OR with me, but only to a certain point.  Then it was goodbye until it was all said and done.  In the OR it was cold.  I laughed a little to myself remembering how my co-workers had teased me that they nearly freeze you before they open you up.  And then the sleeping gas came.  I was out before I knew it.  

Waking up was scary.  I heard sounds before I could see anything, and I couldn't move.  My parents were visiting and I could hear them talking about me.  I heard the Cardiologist tell them everything went well.  Then I was out again.  The next time I woke up my parents were still there - or there again.  I didn't know what time it was. I tried to move and still couldn't open my eyes.  I didn't even know or understand then that I was still hooked up to the heart and lung machine.  That I wasn't breathing on my own.  My mom must have been looking down at me because I was trying to move and get their attention.  I finally was able to open my eyes.  I was so tired.  I was trying to ask what time it was.  I wanted them to go.  Eat, relax, whatever.  But that they didn't need to worry.  My mom figured it out.  I was able to move my right hand like I was pointing to a wrist watch with my left hand slightly raised.  She asked if I wanted to know the time.  I blinked my eyes.  She told me - it was late.  Then i moved my thumb in the manner of go..get out of here.  Mom asked me if I wanted them to go.  I blinked my eyes and this time was able to nod my head.  Mom smiled at me and said they would go eat and be back in the morning and to get some rest.

 I slept a little more after they left. I woke up after a while to the nurse reading off a number.  She noticed that I was awake, smiled at me and showed me that if I wasn't able to sleep I could watch some TV.  I was starting to have some issues with the heart/lung machine.  I was trying to breath on my own and it was interferring with the machine.  I felt like I was going to be sick.  She told me to try and pace my breathing to the machine.  It was a task, but I was able to do it for a time and then it got worse again.  The cardiologist on rounds that night came by and said it was time to pull the tube out.  I had to take a deep breath and they pulled that tube out.  Seemed like forever before it was all the way out!  Shortly after that they removed the drainage tubes.  I had a good nights rest and before I knew it, morning had come.  By the afternoon I was moved from ICU to the recovery unit.  I was in a lot of pain.  They gave me a morphine drip that I could control on my own but it didn't seem to help, no matter how much I had.  And sleep that night was next to impossible!  It seemed there were constantly alarms going off as the recovery room was filled with other heart patients.  Older, senior, heart patients.  They moved me into a room beside the recovery room and I was able to get some better rest, though not a lot. I asked for tylenol and no more morphine.    The morphine was making me feel awful and the change to tylenol helped a lot.  

The next day they moved me into a regular hospital room.  I had a roomate for a while.  She was 91.  The nurses got a kick out of our ages.  Me at 19 and she at 91. I was able to get out of bed now.  Slowly at first though.  Sitting up without feeling dizzy and then walking only to a chair or to the restroom.  The chest pillow helped a lot with movement.  My mom had stayed in town with friends and my Dad went back home to my siblings.  He brought them all back with him and I was able to have visitors.  It was good to see everyone and begin to feel like normal.  

My cardiologist and the surgeon came to see me and told me a few things.  First they said that the hole was bigger than when it was initially measured.  They couldn't stitch it closed like they planned, but used a patch from the pericardium that surrounds the heart to close it.  I was told that if I had opted to go in through the side they would have had to go through the chest after the discovery of the hole being bigger.  They said that if I had opted to wait for surgery, my chances of complications would have happened far sooner than later.  They also said that my heart was alike a brand new heart.  I was quite glad that I had chosen to get it done and over with when I did and how.  

Just a few days later I was able to leave and go home.  I had to swallow about a half dozen pills before they discharged me.  Vitamins.  Oh - that vitamin E they gave me after the heart and lung machine was miraculous!  My lips were so dry from the machine I didn't think they'd every be normal again!  Recovery went well.  Pain happened only when I went to lay down or get up.  My chest pillow was a great help there.  I went for walks and had a good reason to walk.  My parents thought a dog would help give me a reason to walk, and he did!   Best dog ever :)

It has been 25 years this year since I had my surgery.  It took a long time for me to get over my scar.  I kept it covered up as much as I could.  I've had a weight problem ever since though.  They pumped my body full of fluids and didn't need any of my blood that I donated.  That number the nurse was reading when I woke up, was my weight.  I didn't know it right away because I knew how much I weighed and it wasn't the number she read.  The first time I saw myself in a mirror I thought I was looking through a window and was apologizing to the person when I realized it was me.  I didn't recognize myself.  I struggled with the weight for a long time.  When I became active again several years later I found that I could actually run without feeling like I was going to die!  It felt so good!  I wasn't ready to get on with running then, but I did several years later.  How good it felt to run!  Zumba fitness was a lifesaver for me.  Music and dance.  My body struggles now due to the excess weight I carried for to long.  I have mild hypertension, joint issues and thyroid issues.  But life is great!   I'm glad that I didn't wait and had the surgery when I did.  That would be the advice I would give to anyone who is diagnosed with ASD.  Don't wait to have your surgery.  The sooner you have it done, the sooner you will start to feel better.  It is like getting a brand new heart.