Aug 9, 2022
CTEPH patient, Carol Templeton details her complex surgery,
called pulmonary thromboendarterectomy (PTE), which involves the
removal of chronic clots from the lung vessel and the impact it had
on her as the adoptive mom to her 18 month old daughter.
My name is Carol Templeton, and I'm from Los Angeles, California. I
was diagnosed with CTEPH (Chronic thromboembolic pulmonary
hypertension) in 2007. Before that, I didn't have any lung issues.
A couple years before, I had a blood clot in my leg. I had DVT
(Deep vein thrombosis). I went to Kaiser Hospital and they gave me
Heparin. Then they sent me home and said, “Take Coumadin for six
months and everything will be fine.” I would go on hikes, like up
in the local Hills. I was usually able to keep up with the crowd.
But at some point, I noticed we were going uphill and I was not
making it up the hill, which was strange. I always thought, "Well,
maybe I'm just tired." At some point, I couldn't make it up the
hill without breathing heavy and I was just curious about it. But I
didn't really think about it too much.
I'm an architect and I go to meetings. I remember being in a
meeting on Hollywood Boulevard for a project. I had suddenly in the
meeting a major start of a panic attack where I couldn't even
breathe. I went off to the bathroom there and I was like, "Wow, it
just came out of the blue. Like I couldn't breathe." But I got over
it. I’m pretty strong. I didn't really think anything else about
it. Then it happened again. It happened a couple times where I had
this weird panic attack. I remember going to my office one day in
Santa Monica and it was a really rainy day. I was sitting at my
desk and it's like I couldn't breathe. I thought, "What is going on
here?" I went outside and it was raining really hard, which is
strange for LA. I just couldn't catch my breath. I just said, "Wait
a minute. I think I'm done. I'm going to have to go to the
doctor."
I just drove myself to the ER. They put all those stickers on me
for the EKG. Then they looked at me and they said, "Here comes the
gurney. Could you please hop on it?" Then they wheeled me off to
emergency and said I had irregular heart problems. At some point,
the doctor came into my room and just looked at me and said
pulmonary embolism. I didn't even think about what pulmonary
embolism was. I thought maybe people would have a pulmonary
embolism and they would just die right there. Or maybe you had time
to call the ambulance or something. I didn't know I was walking
around with it turns out multiple pulmonary embolisms over a few
years and I was just walking around.
They said, "We're going to have to keep you in the hospital for a
week." They gave me my room and I had to just sit there with an IV
for a week. Then they said, "You'll be fine. Here's some Coumadin.
Goodbye." I was maybe at home for five days and still just felt
really bad. I didn't know what was going on. I drove myself back
again to the ER and I said, "I just don't feel right." They put me
back in the hospital for a few days, running all kinds of tests.
Even then, they didn't come out with what it was. All they knew was
that I had had some sort of blood clotting condition that they
couldn't really define and that I needed some hematologist to come
and figure out what was wrong with me, because I just wasn't
feeling right.
He came through and said that I had tested positive for
anticardiolipin antibodies syndrome, which is APS, and that I would
have to be not taking Coumadin. I'd have to take the Lovenox® shots
through my abdomen twice a day for the rest of my life. Somehow
that would make everything better and then he sent me home. The
problem is I did not get better. I then went through about six
months of unusual swelling. At some point, they thought I had heart
failure. They took me to see a cardiologist. My doctor did the
echocardiogram and said, "Oh, this is very interesting." I think he
brought somebody else into the room because he said, "I don't
understand why you're walking around when you have such an enlarged
right heart." They were like, "Well, this is not a good sign. We're
going to have to go back and all the doctors are going to have to
go figure out what's wrong with you."
The process was taking months and no one seemed to know what the
problem was. Then I went back to my pulmonary doctor and he said,
"Would you like to take a trip to San Diego?" I'm like, "What do
you mean? Like an all expense trip to San Diego?" He said, "Well,
you can go and get tested, because we think that you have some sort
of condition in your lungs that's creating pulmonary hypertension
and your blood clots are not resolving." I said, "Well, that's
pretty rough because I've got an adopted daughter and she's 18
months old. I wasn't planning on a trip to San Diego for this
surgery that they said if you were selected after a week of
testing, it would require that you were frozen for 40 minutes."
They have to stop all blood flow and the doctor was going to go in
and cut out the clots in your lungs. Then after that, I would be
placed in a coma and after that they said, "We don't know how long
you'll be in the hospital, but hopefully this will work." It was a
lot to take in.
It got complicated. We had to get relatives to watch my daughter. I
went down to San Diego. They did a week of testing. They said after
four days or so, they would know if you were going to be a
candidate for the surgery. By day three, they just looked at me and
said, "Come on down. You're going to check in today right this
second." I was prepped and taken down to the operating room. After
the eight-hour surgery, they wheeled me over to the area where
you're in a coma for two days or something like this.
After 18 hours, I heard some nurse next to me nearby saying
something about breakfast burritos. It woke me up, because I was
thinking, "When's the last time I even ate? Boy, I would love a
breakfast burrito." I woke up, and I just have all that stuff down
my throat. The nurse sees me and she's like, "Wow, you really woke
up early." I couldn't talk. They just wrote something on the wall
and they didn't even let me write anything down. They just told me
that I had to wait for the doctor to show up and it would be about
two hours before they could take the respirator out. That was
really difficult, but then they took everything out. Instead of a
breakfast burrito, they gave me this incredibly dry piece of toast,
which I couldn't possibly eat.
Then the recovery started. It was really painful and they wanted me
to take a lot of drugs. I had to do these breathing exercises and
all that. I could barely lie back onto the bed. I was there for
three weeks. I slowly made it to where they said I could go home. I
got home and they told me not to lift anything heavy for three
months or something like that. I had an 18-month old daughter so I
really couldn't lift her at all. We had to get a nanny. Also, my
relatives showed up, my mother-in-law came to try to help out with
my daughter and it just got to be this super crowded house. I ended
up moving across the street to my neighbor so that I could sleep,
because I just needed a room. I would sleep at my neighbors for a
couple weeks and then come and visit them. Visit my in-laws and
visit my daughter and my husband. That was pretty stressful.
Then after a couple weeks, they left, but I still had a nanny to
try to help me with my daughter. I didn't go back to work for three
months. But then when it got to be three months, I really felt like
I still wasn't ready to go back. I somehow got disability to agree
to another three months. I had to go there in person and show them
my scars. After six months, I went back to work, but part-time,
because I just didn't feel like I had the stamina anymore. For
workouts, I would try to walk somewhat. One of the things I would
do is go to Target and get a shopping cart and walk every aisle of
Target. I could rest with the shopping cart.
Here we are 13 years later, and I'm in this group of people that
have been cured of pulmonary hypertension. I still have lingering
swelling occasionally in my leg from the DVT and I have to wear
compression socks. I'm always concerned if I'm flying a lot and
drinking a lot of water. I feel like I can't push myself. I can't
become a marathon runner or anything else. I had doctors that told
me just go out and no more ice skating, no more bike riding, no
more contact sports. Yeah, there are some sacrifices. I have to say
over the 13 years, I didn't go back to working full time. I work at
the most maybe 30 hours a week. I don't work full time. Yeah, I've
I made some sacrifices.
For my daughter, I just feel so lucky to be here because she's
incredibly talented. I've asked her if she remembers that whole
time and she really doesn't remember, because she was 18 months
old. She doesn't remember being shuffled around to my brother's
house or different places or where I went for a month. I just
disappeared.
Since then, she's done all kinds of great things. She wanted to be
in the circus. We put her in circus school. On her own learned how
to walk on stilts. There she was at 10 years old as a professional
stilt walker. In some ways, I feel like I don't want to turn down
things now. I wouldn't say to her, "Don't do that. Don't get on the
stilts or don't take that trip or whatever. It's too dangerous."
Because it's like you're only here for a short time. I spent a lot
of time with her working on all of her activities. I became the
soccer mom except that I wasn't a soccer mom I was a circus mom,
taking her to choir and just on and on and on. It's been a real
treat.
My name is Carol Templeton and I'm aware that I'm rare.
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