31 | Summer 2017
t age 36, Monica Penaranda of California has lived
longer with pulmonary hypertension (PH) than
without it. She was diagnosed at 16 when she
became very ill during her third month of pregnancy. “I couldn’t
even roll over in bed without losing my breath,” she said. Her
doctors told her that if she didn’t terminate the pregnancy, both
she and her son would die. She tried to tough it out, but by the
fifth month her body couldn’t take it anymore.
“My baby was taken from the security of my womb, and
I was dying,” she said. “I don’t remember most of the time in
the hospital, but it was touch and go for a couple of weeks.”
The cause of her problem was diagnosed as a hole in the
upper chamber of her heart, a congenital defect called an
atrial septal defect (ASD). “I was very active in softball and
cheer and was told I could have collapsed on the field from a
massive heart attack and they would have never known why.
That was not the first twist of fate in Monica’s medical
odyssey. The doctor who treated her ASD had recently
attended a workshop on PH and was able to diagnose her
idiopathic pulmonary arterial hypertension correctly within
two weeks. Although the hole in her heart was suspected,
no cause was ever concretely identified.
Over the past 20 years, she has been treated with a variety
of drugs to dilate her lung vessels. She has been in clinical
trials for most of that time. “For every second of those 20
years, I have been on a pump that has a tube that connects
to my heart. I also take Adcirca®, which more people know as
Cialis®, and it works wonders!” (This medicine, also known as
tadalafil, was originally created to treat PH.)
Living with intravenous meds is complex. For instance,
showering is complicated because the pump can’t get wet,
nor can the site where the central line enters the body. “No
more just jumping in the shower,” she said.
The central line must be kept clean and the dressing
changed every day. “Sometimes the tape can make your
skin raw, but you have no choice but to cover it up again
or you risk getting an infection that can actually kill you,”
Monica said. “You become an instant nurse.”
She also felt like an instant pharmacist as the medicine
that goes through the line does not come prepared, and it is
not a just-add-water procedure. “It involves syringes, needles,
vials and a lot of pieces to complete the process,” Monica
said. “It all has to be done in a sterile environment. There is
no ‘Oh, I will do it tomorrow;’ tomorrow you die. It was a big
responsibility for a 16-year-old to adapt to overnight.” Plus,
the drugs, both oral and IV, have a plethora of side effects,
such as pain in her hands and feet, headaches, jaw pain, hot
flashes, nausea and food interactions.
She is currently in a clinical trial with the first implantable
pump to treat PH. “It is like a miracle for me not to carry around
a pump or risk getting my central line infected,” she said.
Since she was diagnosed so young, she believed she
would never find someone to love her and have the family
she dreamed of. She was called the pump girl at school and
says she felt like the bionic woman.
However, PH did not get in the way of love for Monica.
She and Brandon were married in 2010, and he had two
children. “Brandon had lost his wife to cancer when his son
was a baby. When I said yes to becoming Brandon’s wife, I
was also saying yes to becoming the mother of his kids. My
daughter, Bryce, is 19 and my son, Bear, is 10. When Bear
was 5 years old he asked me if he could call me mom and if
I would adopt him. He is my miracle boy. Bear says that his
mommy in heaven is being mommy to my son in heaven.”
Living with a complex condition has brought Monica
rewards: “Living with this disease gives me life through a
beautiful perspective. I see the good in things. I look for the
positives in bad situations. I don’t take anything for granted.
On my good days, nothing holds me back! We do not have
an expiration on us, so do not live like you do!”
LIVING WITH PULMONARY
Monica Penaranda with husband Brandon