Dec 13, 2022
In this episode, pulmonary hypertension patient, Becky Mack
discusses navigating her rare disease diagnosis right after losing
her husband to cancer. She also shares her story of adoption and
motherhood.
My name's Becky Mack, and I live in San Diego. I am a pulmonary
arterial hypertension patient. My entire life I've had difficulty
and had trouble breathing. I’ve always had lung things, but was
never really diagnosed with anything. As I got older it got worse.
I was, as is common with pulmonary hypertension patients,
misdiagnosed with them all; asthma, bronchitis, COPD. Go down the
list, I had them all. Doctors gave me pills and they gave
treatments and they gave me all kinds of stuff, and none of it
really helped.
Then my husband got sick. He got cancer, unfortunately, and he
died. I went to my cardiologist for my yearly checkup, because I
had… as part of my story we now know, I had a mitral valve
replacement 22 years ago. The only thing they could tell me at the
time was that my mitral valve had been fused and blown or wrecked
from rheumatic fever as a child. We checked with everybody in the
family. Nobody remembers me having rheumatic fever. My oldest
sister said, "No. If you had anything and anybody had said those
words or if you would've been in the hospital, I would know. You
did not."
Okay, so whatever it was, I evidently had something. I had bad
strep throat. It was probably a cousin of rheumatic fever. Whatever
it was, it blew my mitral valve. Life goes on. Years later, I grow
up, and I start having difficulty. I went to a doctor, blah blah
blah, and he diagnosed me with a blown mitral valve. So we replaced
it. I got mechanical valve 22 years ago, and life was good.
Then the breathing trouble started. It got a little worse. It got a
little worse, and life went on. My husband got sick. After he died,
I went for my checkup about two months later. As I'm getting my
sonogram, the technician said, "Oh, stay right here, I'll go get
the doctor." That's always your clue that something's wrong.
She comes back in and says, "The doctor would like to see you in
his office." I said, "Oh my gosh, it's got to be bad news." I went
into the doctor's office and he looked at it and he said, "I see
something wrong. I'm not real sure what it is. I would like for you
to see a pulmonologist. I'm going to send you to a colleague who's
two offices down."
I marched my little rear end two offices down right then and there.
He wanted me to do it right away. I went into his office and he
listened to my lungs, and he said, "Well, those are the clearest
lungs I've heard all day. I don't hear any wheezing. I don't hear
anything." He said, "But I suspect something. I'm going to send you
to a colleague of mine at UCSD." I said, "Okay." He said, "Let me
make a phone call." Then he said, "Okay, next Tuesday morning, 7:00
AM, show up at UCSD, blah blah blah, do this, that, and the
other."
So I did. I had my number two son with me. The doctor was going to
give me a right heart catheterization. I had never had one. I
didn't know what they were. As everybody now knows, when you have a
right heart catheterization, they don't put you completely out.
Therefore, my son was able to be in the room. So I'm laying on the
table and the doctor's got the little scope and his little camera,
and he's putting it down and he's barking orders, telling everybody
what to do. Everything's going along fine. My son is standing in
the corner. He's observing everything. I'm aware of what's going
on.
The doctor gets all the way down, takes all the pictures he wants
to, and says, "Just as I suspected, she has pulmonary
hypertension." Without skipping a beat, he turns to my son and
says, "Don't google it." In the meantime, my son's on his phone
googling it. His eyes get big. I had no idea. Six hours later, I
was in the pulmonary hypertension center at UCSD diagnosed with
pulmonary hypertension, getting fitted for a subcutaneous pump.
That was seven years ago.
That was in a new reality. I was absolutely, totally blown away.
Here I was, alone. It was the most unreal time in my life, because
everything had happened so quickly. I was still very much grieving
the loss of my husband. I get him buried and it's like, okay, now
it's time to focus on me, and then boom, this. Now I've got this
life-threatening illness, and I have to deal with that. It was
scary as all heck, because I no longer had my partner to lean on. I
had to do it by myself. I had no choice.
My kids are, at that point, 28, 29, and 30. They all stepped up and
did what they could as they knew how, in their grieving of just
having lost their father. So it was tough on all of us. They all
just kind of took turns getting me to the doctor. It was tough on
everybody, because not only were they grieving the loss of their
father, now they've got a mom who's sick, who's got this weird
thing going on, and all this medical equipment she's got to use.
She's got to be hauled all over town to doctors. It was a really,
really, really rough time.
People say, "Oh, you're so strong, you're so strong, you do this,
that, and the other." There's no choice. I have no choice but to
step up and do what needs to be done. I got to do it myself. So I
do. I don't like it, but there's no other options. My choice is to
stay as healthy as I can for as long as I can, continue to do as
much as I can for as long as I can, and advocate for my own health.
So you just do it. Now, I have my days of depression, but most of
the time it's okay. It's either that or, I don't know what, curl up
and not get out of bed. I don't want to do that. I'm stubborn. I'm
not ready to die.
The support of the few people that I have met through support
groups really is what kept me going, because in the beginning I
didn't know anybody. It's such a rare disease that you don't meet
people in the supermarket that say, "Oh, yeah, my nephew's got
pulmonary hypertension. Oh, yeah, my great-aunt had PH!" Nobody's
ever heard of it. It's like, okay, I have to find something. I have
to find my people.
I was lucky enough to do that through UCSD. They connected me with
the San Diego Pulmonary Hypertension Support Group, Pulmonary
Hypertension Association, and Facebook groups. Sandy Lombardi was
marvelous for doing that. When there was something going on that I
could go to, I go, because I crave being around other people,
because nobody's ever heard of it.
My husband and I got married in 1980 and children were always on
the plan. A couple of years later, okay, it's time, We're preparing
to have kids, and I can't get pregnant. We wait six months. Then we
start the infertility treatment. Nothing is working. We were both
checked out. They didn't see anything major. We tried everything,
spent every single dime we had. Any money we had saved for a house
all went into infertility treatment.
About six years later, I had a fellow at work who just kind of
looked at me just out of nowhere and says, "Well, what's most
important? Do you want to be a parent or do you want to be
pregnant?" For some reason that just clicked, and it's like, I want
to be a parent. So then it was like, okay, okay, adoption's our
next option. We talked and we thought about that. Then we started
the adoption process. We fostered for a while.
What was important to me, and I know it sounds selfish, but what
was important to both my husband and I was that we had a child that
looks like we could've given birth to him or her. We applied to
many, many, many agencies. I started at A and we went all the way
through. We found Vista Del Mar Childcare Services in LA. They were
just like a perfect fit. I remember they said, "Okay, come to an
orientation meeting." So my husband and I dutifully went down
there. We walked in and this fellow's up there, and there's this
whole roomful of people. He looked at us all and said,
"Congratulations, you're all about to be parents." I just started
to cry. Everybody in that room did. It's like, wow, somebody here's
offering me hope. We stuck with their program. It took us about two
years, and we were blessed enough to be matched.
We adopted a baby boy. We brought him home from the hospital, and
life went on, and it was good. When he was five years old, it's
like, okay, we'd like to do this again. By that time we had moved
to San Diego and had looked into adoption here in San Diego. Then I
got to thinking, you know what? I am 40 years old. I am not so sure
I want to do that infant business again. Well, God had other plans,
because my next door neighbor, who was a minister of a church,
said, "Oh, I know two little boys who need a place to stay just
temporarily, and I know that you guys have room." We said, "Sure,
we'll take them in." So we did. They were in the foster care
system. We were already licensed as foster parents. Rory and Ryan
were six and seven at the time. And they stayed, and that's a whole
other story I won't get into.
A year, 18 months later, we had a conversation and a social worker
had the conversation. "Okay, obviously there's no reunification.
How do you guys feel about adopting them?" We said, "We're in." So
life goes on. It took us another year, and we adopted Rory and
Ryan. Now, all of a sudden, I have three boys, five, six, and
seven. It was like, okay, we're done. I got three boys.
Pulmonary hypertension and pregnancy do not mix. I'm thinking that
this was going on, and I'm thankful that that's the case, why I
could never get pregnant. It would've killed me. You know, what is
is, and there's no way I could ever know that, but it worked out.
That's how we became parents. That’s how it fits in with my
pulmonary hypertension story. Had I been pregnant, it might've
killed me.
If I had to give advice to a newly diagnosed patient, I'd have to
say, "Imagine if you were planning a vacation to Holland, and you
had read everything there was to know about Holland. You'd seen
pictures of all the flowers. You knew exactly what you were going
to do in Holland, what you were going to see. How life was going to
be. You got on the airplane to go to Holland, and the plane landed
and you got off, and you're in Italy. Now what? Okay, you enjoy
your time in Italy. You learn how to love Italy. You just do
whatever it takes. You planned on going to Holland, but you ended
up in Italy, so here we are."
My name is Becky Mack, and I'm aware that I'm rare.
Learn more about pulmonary hypertension trials at
www.phaware.global/clinicaltrials. Follow
us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com