Since February is heart awareness month and February 7th-14th
is specifically congenital heart disease (CHD) awareness week I thought I would
write a post on what it’s like living with congenital heart disease. If you go back in my blog and read some of
the first blog posts, it will go into a little more detail about my congenital
heart defect(s). In short, I was born with multiple heart defects, from patent
ductus arteriosus (PDA), a small ventricular septal defect (VSD), atrioventricular
canal (AV canal- I just had a common atrium instead of having both a right and
left atrium), all of the valves in my heart were leaky, and other abnormalities
with my heart caused by heterotaxy polysplenia syndrome (a rare birth defect
that involves the heart and the other organs in the body. I have multiple spleens and the other organs
in my body don’t sit in their normal anatomical position).
My childhood was not normal, at least not in the sense like
it was for other healthy kids my age. I
don’t remember a lot about my childhood but I do remember having to take
medicine for heart failure twice a day, not being able to run around with the
other kids because I would get so tired (my normal oxygen sats without exertion
were between 83-85), and going to lots of cardiology appointments. I loved my cardiologist and loved going to
Primary Children’s Hospital so I didn’t mind all the appointments. At my appointments I would normally get my
favorite nurse who always did my EKG which made it nice. There were times when I hated going to my
appointments because my cardiologist would make me do stress tests. Running on
the treadmill was SO tiring! I normally didn’t make it very long because I just
couldn’t handle it. After one particular
stress test when I was seven, my cardiologist decided it was time for me to
have a heart cath to determine if it was time to repair my AV canal.
I had my heart cath sometime in the Fall of 1997. This heart cath turned out to be a traumatic experience
for me. I was awake when the nurses put
my IVs in, which was not a fun experience in and of itself and then I woke up
during the procedure. I can remember
opening my eyes and seeing the doctor who was preforming the heart cath. He noticed that I was awake and so he told me
that he was almost done, and that he had tried going through my right femoral
artery but discovered that the path to my heart on the right side was blocked
so he had to change and go in through my left side. I was terrified that I had woken up during
the procedure so I closed my eyes and don’t remember waking back up until I was
in recovery. I can remember that while I
was in recovery, my cardiologist came in to get my parents so they could see
the images of the test and hear the results.
The results showed that it was time for me to have my AV canal
fixed.
I had my first open heart surgery on January 27, 1998. During the surgery my AV canal was fixed and I
now have two atriums instead of just a common one. My mitral valve was also repaired during the
surgery. My surgeon left my aortic valve
alone hoping that it would last until I reached adulthood. I remember waking up in the ICU with a tube
down my throat and my hands tied to my side so I didn’t pull anything out. My parents were there when I woke up and
communicating with them was very difficult since I was intubated. Back then they didn’t take the tube out of
your throat as quickly as they do now. I
just remember being miserable with the tube in and was SO happy when they
finally took it out! I don’t remember
much about my ICU stay, which is probably a good thing. I know I was in pain because having your
chest cracked open and then put back together is no picnic. My
brother and sister came to see me the day after my surgery. It was hard having them come in to see me because
they were crying and I knew it was hard on them. I knew they didn’t want to see me this way
and I had to reassure them I was fine.
I had the surgery on a Tuesday and the hope was that I could
go home that following Sunday, but that didn’t happen. The electrical system in my heart was interrupted
during surgery so I had to keep the pacer wires that had been placed after
surgery in a lot longer than planned in order to help my heart beat. So my stay in the ICU was longer than
everyone had anticipated. I was in the
ICU for 4-5 days before I was moved to a regular room (still with the pacer
wires in place) and then I had to stay there for another 5-6 days while my
heart was monitored and the decision to place a permanent pacemaker was made. I had my pacemaker placed nine days after my
open heart surgery. Normally a pacemaker
is placed on the left side of your heart but because of the anatomy of my heart
mine was placed on the right side. I was
able to be released from the hospital the day after my pacemaker was put
in. After ten days in the hospital I was
so excited to go home.
Since that surgery twenty years ago, my heart has been doing
really good. My oxygen sats are now in
the high 90’s and I haven’t had too many complications. I was blessed to have my aortic valve last until
I was 20 years old before it needed to be replaced (that is a whole other story
that I will write about later). I have
had my aortic valve replaced twice now, with the last time being a year ago
this month. So far my mitral valve has
held up and I am hoping that it will continue to hold, but if not then I will
have it replaced as well. I haven’t had
to take any special medicine for my heart in years which is a blessing. The only thing I take is a full strength
aspirin to help keep my blood thin since I am not allowed to take any other
kind of blood thinner because of my history with bleeding. I am on my third pacemaker with the hopes that
it will last another 2-3 years before it needs to be replaced again. I see my cardiologist twice a year where I have
a pacer check, EKG, and a complete echocardiogram. Problems with my heart can happen quickly so
I never know how my clinic visits are going to go.
For me, living with a CHD isn’t a big deal. To be honest it’s made me who I am
today. It instilled in me my passion for
medicine and a thirst to learn as much as I can. Most days I completely forget that I have heart
problems. I have learned to live with
the occasional chest pain, getting tired easily, not being able to exercise as
much or as hard as others can, feeling my heart stop for a second before my
pacemaker kicks in and it starts beating again, and dealing with the symptoms
of severe aortic stenosis or regurgitation when they come. I’ve had to make sacrifices and adjustments
to my life because of my heart and other health problems but it’s not a big
deal. I know that I will have to have
more heart procedures done and I know that I have at least one, possibly more
open heart surgeries down the road. It’s
something that I have accepted, and while I’m not looking forward to them I
know that I can handle it. I was given
this life for a reason and I am grateful for it. I know with all my heart that I won’t have
these problems forever. I know that one
day I will be resurrected and that my body will be made whole. I look forward to that day, although I will
miss my scars and the sound of my heart (seriously it sounds AWESOME)!
In the ICU after my first open heart surgery. The box down by my leg was the pacemaker that I had to carry around until I had my permanent one put in.
These are the first two pacemakers that I had. The one on the left was put in February 1998, and the one on the right was put in July 2006. The pacemaker I have now was placed December 2011. I use my pacemaker about 32% of the time with it mainly being at night.
