Ventricular Assist Devices--
Helping Your Heart at Home by Beth Hawkins.
The HeartWare HVAD is a ventricular
assist device that can give pediatric cardiac patients
with advanced heart failure a chance
to live their lives while allowing them
the sense of normalcy that is vitally
important to every patient.
The system is designed to allow patients
to be discharged from the hospital allowing patients
to take it with them wherever they go.
When I got on the VAD, I felt the way
I did before any of the symptoms so--
honestly, I think it's normal.
I felt pretty normal, and I got my life back.
The HVAD that can plug into a standard household outlet
and also comes with four rechargeable batteries.
When the controller indicates a low battery,
the patient can simply plug in a freshly charged battery
and continue on.
Battery changes are meant to be simple
so patients can change batteries on their own
without supervision.
A VAD coordinator educates the patient and their caregivers
on how to manage the device, respond to any alarms,
and care for where the drive line exits the body.
If the patient or caregivers notice the drive line exit
site is showing signs of infection,
they are taught to contact their VAD coordinator.
Patients go home on medications, including
ones that thin their blood.
They will learn all about these medications
and be provided with a detailed medication list
prior to going home.
Patients will also visit a lab periodically for blood work
and meet with a VAD team for regular clinic visits
to ensure everything is going well.
Patients are implanted with this device
for a variety of indications, but most commonly, it
is used as a bridge to heart transplant
with the goal of improving the patient's quality of life,
not just the quantity.
Deyven's Story.
Deyven is your typical college student.
He lives an active on-campus life and like any good student,
spends a lot of time studying in his dorm room.
He has been living with the VAD for almost two years.
They've been really accepting.
They made sure, basically, if there's anything
I needed I can come to them.
For example, if there was a power outage,
they told me the particular buildings
that had backup generators to go to
in case I have to charge my batteries.
And again, I have to make sure my batteries are charged
so I bring extra batteries in my bookbag when I go to class.
Deyven's dorm room contains no IVs or medical devices.
Everything he needs to live on his VAD, fits under his bed.
A quick battery change and he is off to class.
The easy stuff that I was able to do in the past,
it does take more time.
So like showering, I can't just like get
a towel and hop in the shower.
I have to cover the dressing site,
make sure that it doesn't get wet.
Danny's Story.
I was nervous.
I was scared.
It was just all of the emotions at the same time.
Danny's lacrosse season was coming to a close,
and he had just gotten his driver's license
with an entire summer ahead of him.
He had been working out all winter
and was getting really built up with muscles and weights
and working out.
And all of a sudden, he started to lose weight.
And with the weight loss, he also
started to feel winded when he was going upstairs.
And so after a few more weeks of feeling the same symptoms,
I went to get a lung x-ray to see
if it was walking pneumonia, and it turned out
that I had an enlarged heart that they
could see in the x-ray.
So we ended up getting a echocardiogram,
and they told me I had a very enlarged heart.
And I had to go to Boston Children's right away.
So that was probably the scariest day
of my life for sure.
The days and weeks that followed were a whirlwind
for Trish and Danny.
Tests were taken and options were laid out.
Initially, they managed a continuous infusion
of milrinone because it seemed less invasive.
It soon became clear that this option was not for them.
So after two weeks, I was having trouble
walking more than like 100 yards.
I was becoming jaundice, and I just overall
was feeling pretty terrible.
He just was not thriving.
It was so sad to see him this way so eventually his heart was
so bad that eventually on the milrinone
his kidneys and liver started to fail.
So at that point, he had to go back to the hospital,
and we had no choice but to put him on the VAD.
Soon after his surgery, Danny realized being on the VAD
was the best option for him.
So after a week of post-op, I was feeling so much better.
I could do stairs.
I was in the little back emergency exit
stairwell doing like sets of 10, up and down, two stories.
And I was breaking a sweat, and I just felt amazing.
I mean, it was the first time I broke
a sweat in like three months.
He had so much energy.
He had color in his face.
He just felt so good.
So for us, it was definitely the right move for Danny, for sure.
Danny and his family soon fell into a routine,
and normalcy began to return.
So in the morning, he would get up, and he would take his meds.
Then he would click himself out of the electrical outlet
and into a battery, and all his batteries
were in a place that were being charged.
We would sometimes change my site
if it had to be changed, which was every two days.
And then I'd kind of walk around my parents' just to get
exercise.
And then I'd kind of have the day to myself.
I'd hang out with people, I had friends over,
and I was actually getting ready to go back to school.
Not long after Danny was implanted with the VAD,
he got the call that they had a heart for him.
His transplant went well, and he is now living a normal life.
Have faith in your doctors, and it's going to be all right.
And the VAD's not scary.
It's amazing.
And it'll save your life like it saved mine.
And you just got to keep trudging on,
and you'll get to that heart transplant.
Deyven, too, hopes that day will come.
But until then, he knows that the VAD will not only
keep him alive, but it will also keep
his life as normal as possible.
All of the goals that I've had, I've
been able to achieve even with the VAD.
So not really much I'd change.
I know I'm going to get a heart.
I don't know when it's going to happen.
I don't know what time.
I just have to wait and hope, and when I do get the call,
I know it will be a great one.
So, just got to look forward to it.
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