Tag Archives: Congenital Heart Defect

May is here!

Surgery month has arrived… which means tomorrow is the only day I have nothing on my calendar. Seriously.

We have some very dear friends coming to town on Wednesday and from the moment I pick them up from the airport, it’s a whirlwind. I’m pretty sure I will blink and it will be surgery time.

Another great thing happening this month before surgery is that my dad is flying in for a visit. He is unable to be here for the actual surgery, so he’s visiting a week or so before hand. I know Z is super excited to see Grandpa.

Last month we crossed a bunch of items off the to do list (bunk beds purchased and assembled, family pictures planned and taken, just to mention a few), so now I’ve started my pre-surgery planning, which mostly consists of starting a packing list for the boys.

I had a hilarious conversation with Z this morning when I said “Hey! It’s May! Do you know what that means?”

He replied “Hospital.  [mumble…toddler words…something I couldn’t understand].”  After several minutes I finally figured out he was saying “new scar.” Which is true.

So that is where we are at, figuring out all the logistics and details of what actually needs to be done when surgery time arrives.

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Heart Valves

Before we met with the surgeon last week, we were praying and trying to weigh the pros and cons of all the heart valve options available.

Here are the different types of valves we were aware of with their pros and cons.

  • Mechanical
    • Pro.
      • Infinite life span
    • Cons.
      • Audible (clicking sounds)
      • Blood thinners for the rest of one’s life
  • Tissue (human, cow, or pig)
    • Pros
      • Silent
      • Probably no lifelong medicines (including both blood thinners and anti-rejection meds)
    • Con
      • 10-15 year lifespan

We really didn’t want for me to take meds for the rest of my life… but the idea of another heart surgery in 10-15 years, that didn’t sit well either.

Much to our surprise and relief, it turns out we didn’t even get to choose. (Thank you Lord! Once again preparing the way when we didn’t even realize it.) The pulmonary valve is too low pressure for a mechanical valve to even be an option. Lower pressure means slower flow, which means higher chance of blood “sticking” to the valve. Plus, with my age, blood thinners means no future chance at having kids (birth defects) and at an early age – I’d have to be on guard against falls. A small fall hitting my head means nothing now. With blood thinners, a small fall could be life threatening.

“So Debra…” (you might be thinking) “…that one Con with tissue valves, that seems pretty major!”

Yes, and No. Yes – I would need a new valve assuming I live to a ripe old age and something else doesn’t kill me. Doing the math – maybe two additional valves in my life time.  So… heart surgery again?!?

Probably not. At least not Open Heart.

Once this valve is put in place, my heart will have a “landing pad” of sorts for a future replacement valve.  In all likelihood – that valve (a melody valve) would be put in through my leg! (Crazy right!?!) It would be a much less extreme surgery. And besides that – 10-15 years from now, medicine and technology will change a lot. I know that from experience. Ten to fifteen years ago, they weren’t sure if it would be a good idea for me to have kids. Well – clearly that changed. 🙂

In my next blog post, I’ll give you a little more detail on what valve I’m getting. Here’s a hint “Moooooo.”

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Because things change

We planned too far in advance 🙂

Apparently we picked the week the surgeon will be out of town for a conference. It wasn’t even on her official schedule yet. haha!

New surgery date will be May 25.

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“Someday” is Now

I’ve been blogging about my heart history for the last few posts. You can read about when I was born, my open heart surgery at age 2, and how having a Congenital Heart Defect (CHD) has affected my growing up years.

I’ve posted in the past about how pregnancy could effect my heart. It turns out, after I was able to carry two wonderful precious babies, my heart has in fact has some negative change.

First – because I can – here are some of my favorite pictures of my boys. I love them to bits!

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The day my youngest (E) was born.

 

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Are they not precious?! Both of these photos of the boys are from when we were still in the hospital. (Z on the left, E on the right)

 

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Twins, two years apart. Z on the left – 5 days old. E on the right – 9 days old.

 

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Love, love, love this!

 

Cankle to Ankle

These two pictures show just how dramatic the swelling in my leg was after my second child. Later, I was told that this is considered “symptomatic heart failure.” Which makes sense I guess, when you only lose .8 pounds after having a 7+ lb baby … something must be amiss.

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From September 9th – it took this long for my leg to go back to normal.

All of this to say – yes – pregnancy had an impact on my heart. HOWEVER — and this is important — This is NOT the reason for what I’m about to say. It had an impact of timing, but it’s not the reason.

So on to the news:

“Someday” is Now.

Meaning: I’m getting a heart valve!

We met with the surgeon this week and I am currently scheduled for a Valve Implantation on May 17th. May 25th  (updated to reflect new surgery date)

[It’s not a valve replacement or repair, because I don’t have anything to replace or repair. 🙂 ]

We were able to ask a ton of questions and are feeling confident that this is a good decision and the timing is right. It is considered “non-emergency”.  That’s the entire reason my doctors have kept such a close eye on me all of my life – to figure out exactly when “now” should be. While not an emergency, it is necessary because at this stage, they expect my heart to return to “normal” size since the pumping function has not been compromised (yet).

Mostly, we are wanting everyone to know so that you can be praying.

Prayer requests:

*Peace of mind for both JJ and I (I’m feeling ok about actual surgery – being put out will be better than the c-sections. Recovery – not so much. I’m dreading that and looking forward to late summer when, hopefully, I will begin discover energy I didn’t even know was possible.)

*Clarity and discernment on when and how we explain to Z what’s going on. Thankfully, due to E arriving via c-section, he already knows that Hospitals & Doctors “Help people”

*Work for JJ now, so he will be able to take some time once it’s surgery and recovery time

*A good plane ticket price for my mom as she flying here for the surgery and some of my immediate recovery time

*That Insurance will cover everything. We expect it to – but – you never know.

Praises

*Great doctors that are experts in their field

*We finished our emergency fund – a few weeks before we learned this was what our spring contained

 

I’ll be continuing to do some blog posts regarding my heart and up coming surgery. I’ll answer some frequently asked questions and such. Also, when May 25th arrives – this blog (not facebook or twitter) will be the best place for updates.

Thanks for stopping by. I know I have friends and family all over the US and Canada, the world really. Since I already had an established blog – we thought this would be the best way to let every one know what’s going on.

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Growing up

A few years after my open heart surgery, my family moved from Chicagoland to the Pacific Northwest. I was 6 and a half when we moved.

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Around 5 or 6 years old in Chicago. I think this is a sweet, rare photo of me in a dress.

 

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(L) My second year of 1st grade. (Yes, I took it twice. That’s what happen when you move and are really shy.) and (R) kindergarten. Please notice the amazing cutting work on these pictures. Done by yours truly, ages 5 & 7. I’m better at this now.

As I mentioned in my last post, there is no cure for CHD. I spent many days going to cardiology appointments. For a while, it was once a year, then twice a year. There was a period of time I got to go only once every two years, which was short lived as I hit puberty and my cardiologist knew I needed to be monitored more often.

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On a family vacation. This is a picture of my brothers and me. Unlike the photo above of me in a dress, this is much closer to my “normal” as a kid. And check out that mullet!

My “normal” has always been a little off from actual “normal.” For instance, I’ve always had restrictions on what sports I may participate in. When I was in 5th grade, I participated in track, only to be chastised by my cardiologist. “Don’t you know you aren’t supposed to run track?!? Don’t you hear the new stories of kids dropping dead on the running track!?!” Oops! (If you are wondering, I got the green light to play soft ball, and be in a bowling league.)

Because of these physical limitations, I was not allowed to participate in P.E.. That awkward, learn to shower at school with classmates situation – I never lived it. It also meant I got to take a ton of extra electives in High School. (Lots of Art!)

piano

Piano recital. I took around 5 years of lessons. I played ok, but I was terrible at actually putting in time to practice. That dress! :-/

 

dog

I have always loved reading. This was probably from my Jr. High years. Hanging out with our golden retriever.

Medically speaking, everything is always more complicated for me. In high school, when I needed to have my wisdom teeth removed, no one would touch me because I was such a risk. I had to have them out up at Seattle Children’s Hospital.

When I had a very unusual case of gall stones the summer before my senior year of college, I had to have extra tests just to make sure it was not being caused by my heart. Apparently my blood was breaking down faster than it was supposed to. This resulted in hard conversations about “What happens if they say I’m dying?” Thankfully, that was not the case and I was able to return to college and complete my degree.

As most of you likely know, more recently, my heart health made for some high risk pregnancies. (You can read more about that here.)

I’ve been blessed and am very fortunate to live what I call “bonus time.”  If you think about it, we are all in bonus time – I just happen to have tangible proof.

Thank you for reading my story. Come back soon to find out “What’s Next.”

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It all started at the beginning

I was born in the suburbs of Chicago. My parents moved from Bismark North Dakota to the Chicago area when my mom was seven months pregnant with me. This part of my story always seems miraculous to me. Who does that? Who moves when they are 2 months out from having a baby? Apparently, my parents and it’s fantastic they did as you will soon read.

When I was born, I seemed fine.

1980_woodstock

Me – new. See that hair? The nurses nicked named me “Woodstock” like the yellow bird from snoopy because my hair stood straight up. I was 8 lbs 14 oz when I was born. Another blessing as my ill health caused me to lose a lot of weight. I’m still “pink” in this photo because I haven’t crashed yet. Everyone is unaware of what is about to happen.

And then something went terribly wrong. Had I been born in North Dakota – this is the end of the story. I die. You never read this. But it isn’t the end because my parent’s trusted God’s best for them and now being near a major US city, I had a chance.

1980_blue

This is a picture of my dad holding me (with my maternal grandparents). If you look close, you can see I don’t quite look the normal “pink”. I’m a little blueish – gray. It’s called being cyanotic. It has to do with having low oxygen saturation.

While my mom was still recovering from my birth, I was put in an ambulance and rushed 40 minutes to downtown Chicago. Within the first 24 hours of life, the doctors discovered I had Pulmonary Atreisa (complete blockage of the pulmonary valve – blood could not get to the lungs to pick up oxygen), so they performed a Waterston Shunt to help reroute blood so that I could pick up oxygen from my lungs.

While this did improve my condition and bought me time, I recently learned that I was only at about 75% oxygen level. Not good enough. At around 30 days, the doctors went back in and basically “poked a hole” where my valve should have been. My mom says I “pinked right up.”

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This is a picture of me after my first surgery. I still have some pretty sweet scars from this one, including the “dent” in my leg. (I forget what normal legs look like, from day one I had a dent from the cut down IV.)

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I’m looking a lot better in this photo. It’s likely right before I went home or at a later check up.

Both of these surgeries were what’s called “open chest” meaning they did not stop my heart (at least, I think… I’m a little foggy on the details and my old medical records don’t provide much help). I went home at around 40 days old and that was it for a few years. I’m sure there were many doctors appointments and check ups, making sure everything was going ok.

I’ve heard stories about how I was a terrible baby (I cried a lot – screaming really). I’ve been told that my mom got approval, even encouragement, from the doctor to let me cry. It was “good for my heart.” I’m pretty sure I don’t have any screaming baby Debra pictures to share. 😉

Life moved on into toddlerhood.

Come back to read what happened when I was around 2 and a half years old.

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Taking blogging to Heart.

I was trying to decide what to blog about next since our Dave Ramsey journey (while it continues) will not be my main subject matter anymore.

I don’t think I’m going to be a “mommy blogger” as I read somewhere that there are lots of mommy bloggers when the kids are infants and toddlers – but somewhere between elementary and teenage years, they tend to disappear. Toddlers are hilarious. Teenagers are – not so much (or at least I’ve been told).

I thought some of my long time readers, as well as new readers, might be interested in learning more about my heart condition.

I’ve mentioned it a time or two, but I thought I’d give a little more details and toss in a few throw back pictures. So if you are interested – check back soon. 2015 was not the year of the blog – but perhaps 2016 will be different.

Now to go tell people I have a new post up. 🙂  9pm on a Saturday – that should reel in the readers haha! Let’s be serious – I might reject the idea of being a “mommy blogger” but I am a mom, who blogs, and now is the time the kids are in bed – thus… I actually have time to write.

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“My Heart Condition”

**UPDATED – to include additional information about my first two surgeries**

I’ve used this phrase a lot over the years and I thought some might be curious (or scientifically / medically minded) to know what it is I mean by this.

Heart Defects

First and foremost, my heart condition is a “Congenital Heart Defect” (CHD). Did you know that heart defects are the number 1 birth defect? Just about 1 in 100 babies are born with one.  This can be anything from a murmur, or valve issue, to PDA’s not closing in the proper time, to much more complicated – multiple issue formation problems.  Another item to note is that for those of us with a CHD – we have a slightly higher chance of our children being born with a CHD – about 4-6% (instead of the normal 1%).

My CHD

So what exactly is “my heart condition”?  It’s called pulmonary atresia, which is a complete blockage of the pulmonary valve. In my case, the pulmonary valve never formed at all – there was just a wall of heart muscle where the valve should have been.

When a baby is in utero, the baby is not breathing (or using his or her lungs), so there are some “short cuts” in the heart that allow for blood flow. The PDA & the PFO are small holes that allow a baby to pump blood while bypassing the lungs.  Upon birth, normally these holes close (if they don’t as mentioned above, it’s a heart defect – usually fixed by medicine or if needed, a fairly simple medical procedure).

In my case, the holes closed as they should, but in doing so, it took away the short cuts and prevented blood from making it to the lungs to pick up oxygen. About 12 hours after birth, I “crashed” – that is I started turning blue, also called cyanotic. I was whisked away from my suburban Chicago hospital and shipped via ambulance downtown to a large children’s hospital.  There they did my first heart surgery while I was just about 24 hours old.

The Fix

I don’t have all the details, but basically as I understand it, they put in a Waterston Shunt (grafting 2 vessels to reroute the blood).  At 30 days old, they did a second surgery, basically “poking a hole” where the valve should have been to increase my oxidation levels.  And by 40 days, I was on my way home. Both of these surgery are called “Open Chest” because the heart was not stopped to do the surgery, like with open heart surgery, and a bypass machine was not used. (Side note, if this happened today – there is now medicine to keep the PDA open or an increased chance they would catch the issue via sonogram- so they can buy time and come up with a plan. )

Obviously, I don’t remember, but I’ve heard the story so many times – it was pretty dire.  My dad overheard the surgeon arguing on the phone about getting an Operating Room “stat – or this girl is going to die”. Apparently, there was not an OR available right away. Yikes. I can’t imagine hearing that.

Last Surgery

Then when I was bout 2 and a half, I did have Open Heart Surgery (I’m part of the ‘zipper club!”). I believe this surgery was to repair a small hole called a ventricular septal defect (VSD), which is a slight hole between the right and left ventricle wall. And that was my last heart surgery – over 30 years ago.

Through the Years

What all this means is that through the years, I’ve had to go to the cardiologist almost every year, just for check ups and to keep an eye on the size of my heart. Because I do not yet have a pulmonary valve, I have no “gate keeper” regulating blood flow. This, in turn, means some blood goes backwards (called regurgitation), and thus, my heart is less efficient. Through the last 32 years my heart is slightly enlarged – and overall less efficient than a healthy person’s heart.

Another thing that can’t be left out is that I was considered one of the worst cases every to eventually do so well. If I had been born just a few years earlier, or in North Dakota (where my parents lived until my mom was 7 months pregnant & they moved to Chicago), I would not have survived. Because of this, I’m kind of on the “cutting edge” of Adults with Congenital Heart Defects. There aren’t that many of us with complicated CHD’s that are now alive and thriving in adulthood.  In fact, because it’s such a new specialty field, I had to go to the children’s hospital until I was 23 when they finally completed setting up a transition team for specialists at the University of Washington. I often joke that they should pay me for all my tests as I’m unique and they are learning from me.

When I moved for college, and then after college to Texas, it presented a major priority to find a new cardiologist.  **Pet Peeve Alert** So many individuals hear I have a heart condition and recommend a cardiologist when they hear I need one. I know they are trying to help and have the best intentions – but I can’t go see just a regular cardiologist. I don’t have heart disease, I’m not at risk for a heart attack, I don’t have clogged arteries. Sorry – regular cardiologists have only read about people like me in text books. 🙂

I digress. So what does this mean long term?

Long Term Outlook

Well for starters, I still do not have a valve. So my less efficient heart is often noticeable to me in the fact that I have less stamina than most 32 year old women.

It is also very common for me to have irregular heart beats and palpitations. Most of the time this is normal – though a few times through the years, I’ve noticed them more frequently which I report to the doctor and usually end up having a heart monitor for a day.

Because my heart is enlarged, and will probably continue to become more enlarged over time, it is key that I go to the doctor every year so they can keep track of how big it is, and how much ‘regurgitation’ is taking place. At some point, my heart will reach a threshold of irreversible damage. And should this happen, or should it completely wear out, the ultimate outcome is “Congestive Heart Failure.”

The goal is that by keeping track of where it at, I will have a valve put in before it reaches that threshold. The reason we wait – is because 1. Medial technology is always improving and 2. Once I’m done having children, I’ll have more options available.

They would put in either a live tissue valve (which believe it or not, is done in a way that anti-rejection meds are not needed) or a mechanical valve (which requires blood thinners and would not be safe for a baby if I were pregnant).

So we wait.  8 years ago, I was told “best case scenario, I’d probably need a valve in the next 10 years”. Last year, I was told “”best case scenario, I’d probably need a valve in the next 10 years”. So I gain some time!

There you go. If you ever wondered what I meant when I said “my heart condition,” now you know.

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