Thanks for stopping by

If you are new to my blog – more heart surgery updates will be posted tomorrow.
If you want to read (and see) some of my story, and why I’m having heart surgery…

Start here: It All Started At the Beginning

(January 25th, 2016’s post)

As always, Thanks for the continued prayers!

No matter what happens tomorrow, in all things, God is good!

 

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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.

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.

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.

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

 

(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.

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

 

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.”

My CHD – Pregnancy Edition

So last post, I ran through what I mean by “my heart condition.”

I thought this post, I might write about what it meant for being pregnant.

To lay some groundwork, when I was a teenager and young adult cardiologists said that I might not be able to have kids. Not that I couldn’t, but that it’s very highly likely that I shouldn’t.

Before you start thinking “Way to go and ignore your doctors, Debra. You just had a baby!” In the last maybe 8 years or so, my doctors changed that. My current cardiologist told me a handful of years ago that it shouldn’t be a problem. I would be high risk, and have to be watched closer than a ‘normal’ woman, but I should be able – and could if I wanted – to have kids.

Biggest Risk

Now, as I mentioned last post in “Long Term Outlook,” the long term risk to me with my CHD and resulting enlarged heart is Congestive Heart Failure.

The four main symptoms of Congestive Heart Failure are:

1. Irregular heart beats

2. Swelling due to the heart not being able to keep up, extra fluid in the lungs and around the heart, but also showing up in ones legs, hands, etc.

3. Trouble breathing, particularly while lying down and resting (due to fluid around the lungs)

4. Dizziness

These are the things I keep an eye out for. However, symptom 1 is VERY common for me. My heart skips beats or races on a fairly often basis. So it’s hard to take any special note of that symptom, unless I seem to notice it happening more frequently then what would be ‘normal’ for me.

Increased Risk While Pregnant

With the increased blood flow and fluid retention that pregnancy brings, Congestive Heart Failure is a bigger risk.

The second symptom was extremely frustrating during pregnancy. I had some major swelling issues at about 3 months. It was a little early for pregnancy swelling, yet, it was difficult to determine if it was pregnancy or heart related.

My cardiologist suggested to cut down on sodium and see if that helped. Thankfully, it did! I was pretty bummed to have to be super cautious about how much sodium I was eating for 6 months – and it did affect our food budget as my normal way of cooking (with canned goods) had to be altered, but it made a huge difference. I only had a little swelling for the remainder of the pregnancy. And when I did, it could usually be traced to a higher sodium meal recently eaten, or having just spent a lot of time on my feet (which is normal for pregnancy).

The other main risk is once the baby is born. When the body is eliminating all the extra fluids. I was told to expect to stay in the hospital for observation for 4-5 days after our baby was born.

Z was born. And things looked to be going well. However, about 4 days later, one of my feet blimped up really bad, and really quickly. I was told it probably was NOT heart related as the typical MO for that would be that both feet would be equally swollen, not just one foot becoming very swollen. It was a little scary and they had me go in for an ultrasound to make sure I didn’t have a blood clot. Thankfully, I did not.

It was not a big enough concern for me to stay much longer in the hospital as I was discharged the next day. It did take my foot a week or so to finally get back down to size, which was such a relief when it did.

I did experience symptom 3 (trouble breathing while lying down) when I got home. It was concerning enough to call the cardiologist. They suggested that (since my heart was looking so good when I left the hospital) it might just be something that anemia (from loss of blood during the c-section) was causing. Funny enough, the second night I experienced this, I discovered that in actuality, I was having issues with Snoring! (Which is not normal for me.) As annoying as it was, it was such a relief.

The same night I had trouble breathing, I was also dizzy (symptom 4) at one point around 12:30 am. This only happened once and was also chalked up to being anemic.

So there you go. I was able to be pregnant, and have a child, while not having Congestive Heart Failure. But it was not without a few scares and I was so thankful for the great care from my cardiologist, my OB, as well as the nursing staff and of course my loving family.

What All This Means For My Child

To quick rehash from my previous post, heart defects are the most common birth defect – just about 1% of babies are born with one. Major ones can be very obvious from day one, and minor ones might not be caught until adulthood. Even though my heart defect is not due to genetics – it still increases the risk that my children will have a CHD.  Statistics say bout 4-6%.

Jackpot! Little Z has a minor CHD. Because of the slightly higher statistical chance, at 20 weeks, and then again at 24 weeks because they thought they saw something – we had fetal echos done. Basically, a super long sonogram – focusing in on the little guy’s heart.

Based on those two tests, they recommended we have an echo done on Z once he was born, before he was discharged from the hospital. We did – and it confirmed the diagnosis: Pulmonary Stenosis. Same valve that I have an issue with, but different issue. He’s valve is slightly narrowed.

Thankfully, tests confirm it’s very mild and the long term outlook is quite good, probably not ever involving any type of surgery or procedure.

So there you go – more than you ever wanted to know about CHD and pregnancy.

“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.