Nov 15, 2022
Attorney Katie Coman discusses losing her husband to complications following a bone-marrow transplant. Two years later, while still in mourning, this single-mother from Long Beach, California was diagnosed with Ideopathic Pulmonary Hypertension.
My name is Katie Coman. I'm 39 years old. I live in Long Beach,
California. I was diagnosed with pulmonary arterial hypertension in
March of 2020. I'm an attorney. I graduated law school in 2008,
which was a recession time actually. I got my first job in the law
off of Craigslist. I felt very lucky to get that job. At that job,
I met my husband, who was a partner in the firm. We worked together
over the next 10 years, which was wonderful. When I met my husband,
he was about five years out of having a bone marrow transplant
following a leukemia diagnosis in his late thirties.
He was treated at City of Hope. He underwent multiple rounds of
chemotherapy, a round of radiation, and then had a bone marrow
transplant in 2005. His cancer never came back. He was always
cancer-free during our time together, but he did have ongoing
health issues after having a bone marrow transplant. He had what's
called graft-versus-host disease, where his body was sort of
rejecting the transplant. For a lot of patients, those rejection
issues can dissipate with time. But for my husband, it did not
dissipate. He was on high doses of prednisone and other medications
to suppress his immune system to kind of keep that in check. But
when you're on immunosuppressants, then you become very susceptible
to infection.
For my husband, that meant that he often had bouts in the hospital
from infections that would become dangerous. He had infections that
got into his bloodstream and became life threatening a couple of
times. But overall, he was a very functional person. He worked
full-time as an attorney and a trial lawyer. We loved the work that
we did together. It was his really number one joy. We got married
in 2013, and I had my son in 2016.
In 2018, my husband was in the middle of a trial, which was out in
San Bernardino. For those of you who are not from California,
that's kind of an inland area. It takes about an hour and a half or
two hours with traffic from Long Beach. He was commuting back and
forth to court, very busy. On the tail end of that trail, he
started retaining fluid. We knew that that meant that something was
wrong. Usually that means your heart isn't pumping right or your
kidneys aren't working right. He went to City of Hope and
deliberately didn't pack a bag, because he thought that that would
be bad luck that they would admit him. He was right. He went to
City of Hope and they did admit him.
Before they checked him in, he left to go to Target and get some
pajamas for the night before I could bring a bag. That was kind of
where everything changed. He was diagnosed as being in kidney
failure, because of some of the medications he was on had put too
much stress on his body. They wanted to wait it out and see if he
was going to have to go on dialysis, which he ultimately did. It
turned into a very extended hospital stay. He was in the hospital
for about a month when we were finally talking about having him be
discharged and go outpatient to continue dialysis on an outpatient
basis.
All of a sudden, everything changed when a nurse heard a crackle in
his lungs when she was doing a routine check. He was diagnosed with
pneumonia, which put alarm bells off pretty quickly. City of Hope
knows that when an immunosuppressed patient is diagnosed with
pneumonia, it can be very dangerous. For the next week, he was
stable, but not improving. Then all of a sudden, he took very scary
turn when they wanted to do a CT scan. He went into basically an
arrest with his breathing and they had to intubate him. From there,
he never recovered. It was a very difficult thing being at the
hospital and having a two year old. Ultimately, I was the caregiver
who had to make the decision to let him go, and I knew that that
was what he would've wanted.
We let him go on April 13th, 2018. I stopped working for a long
time and just took some time to be with my son and my family. I
started traveling and kind of just doing some soul searching on how
I was going to move forward. It was in my travels that my life
really changed, because I started to notice that I was very short
of breath when I was on some of these trips.
First, I went to Iceland with a couple of girlfriends from college,
and it was a big adventure trip. We were hiking a lot. We were
doing a lot of outdoorsy things. I noticed that I was having a lot
of trouble keeping up. I was fatigued. I was more tired than the
other girls. But I just kind of ignored it. Everyone thought, "Hey,
you're grieving and you're in this situation. You're probably a
little out of shape." Life went on.
Then three months later, I went to the Middle East again with girls
from college. I had a friend from college whose husband had gotten
a job in Abu Dhabi. We went to Dubai, Abu Dhabi. We went to a
country called Oman. Then we went to Jordan. At the end, we hiked
Petra, which is one of the Seven Wonders of the World.
In that hike, I was so short of breath and lightheaded. The other
girls went ahead of me. I didn't know if I could finish the hike. I
saw all of these older travelers passing me. There was a very heavy
set gentleman, probably 30 years older than me, who passed me. He
himself was struggling and he still passed me. I thought, there's
something wrong here. Him hacking up his lungs, he's probably a
smoker, still moving beyond where I was. I knew that something
wasn't right. I kept telling friends and family I felt short of
breath and everyone again said, "You probably have asthma. Just
you're fine." I never went to a doctor about it. I just ignored
it.
I had gone back to work in June of 2019. I was working full-time. I
had my son. I was very busy. I just didn't really put a lot of
thought into what might be going on with me. Then one night I left
work and I was walking up the stairs of our parking structure and I
felt so lightheaded, I knew I was going to faint. I made it to my
car. I opened my car door. I slouched into the front seat of my
car. The next thing I know, I woke up and I had fainted. I
immediately called friends and family and said that I had fainted,
but I felt well enough to drive home, which I should not have done.
I went home and my parents said, "You need to go to the ER. You've
fainted. Something's wrong."
I said, "Nope, not going to go. I'm fine," but they convinced me
the next morning to go to the ER. So I did. You have to remember,
this is now February of 2020. It was really just the beginning of
COVID. The ER was packed. They didn't have room for me at all. They
did a number of tests on me, but no one even came back to talk to
me and tell me what the results of my echo were. When I finally
insisted on knowing what was going on, the ER doctor on the floor
quickly looked at my echo and said everything was normal, but that
they wanted to run more tests, because they were concerned that my
resting heart rate was near a hundred and my EKG had been
abnormal.
Even the doctors made excuses for that and said, "Maybe your heart
just fires abnormally. Maybe that's your norm." I don't look sick.
I'm young and I'm petite, and so everyone thinks you must be
healthy. I wound up signing AMA paperwork, which is against medical
advice, and I left that ER, because they weren't telling me that
anything was wrong. I had been there for a full day and they didn't
have a room to admit me. I didn't want to spend overnight in a
communal ER space. So I went home.
In the middle of the night, a cardiologist who was on call from
that ER took a look at my echo and realized that there was
something severely wrong with the right side of my heart. He
thought that I had a pulmonary embolism. He called and left a
voicemail in the middle of the night, which I didn't get until the
next morning, and said, "You are in a life or death situation. You
need to go to a hospital immediately. Call 911." When I woke up, I
called 911. An ambulance took me to a different bigger hospital
that I asked them to take me to, which is Long Beach Memorial.
I was there for the next four days, where they quickly did CT scans
and tests to determine whether or not I had a pulmonary embolism. I
didn't, but they could see that the right side of my heart was
extremely enlarged and that something was very, very wrong. Within
a few days of being at the hospital, they had tentatively diagnosed
me with pulmonary hypertension. They could not find a reason why.
My diagnosis is idiopathic. They then said that I could go home,
but they wanted to do a right heart catheterization on March 4th to
confirm my diagnosis, which they did do. It confirmed that I had
pulmonary arterial hypertension.
My pressures were extremely high. I believe it was something like
140 was the top number and it should be between 20 and 25. I had a
very severe case, and my heart was very enlarged, so I was in heart
failure. They told me, "Your best chance here is that you need to
go to UCLA," because that's where the biggest pulmonary
hypertension treatment center is in Southern California. That's
where I went.
I had gone from being very high functional and continuing to work
every day to feeling like I could not get out of bed. I had no
energy, and I didn't know how I was going to move forward in my
life. I felt like I was basically permanently disabled. Mentally, I
was in a very dark place. I couldn't stay off Google and reading
that my life expectancy might be two or three years. My son was
little. My husband had already passed. It was just a nightmare.
I found Richard Channick at UCLA and he was just a light. He saw
me. He got me on medication right away, which immediately made a
big difference. He told me that I needed to not look at Google and
I needed to know that he has patients that have lived with this
disease for decades, even 30 years. That really I'm going to do how
I'm going to do. It depends on whether I'm a responder or not. He
calls it a responder, a non-responder.
We saw pretty clearly right away that I was a responder. There was
some hope, but there have still been ups and downs. He put me on
two medications to start with, and I did feel a big improvement
right away. I had been on disability for a while after my
diagnosis. After my medication levels were where there were
supposed to be and I was feeling better, I did go back to work. But
Rich did another right heart catheterization I want to say in
September 2020, probably about six months after my diagnosis. My
numbers were down, but my top number was still around 90 or
100.
He wasn't as happy with my progress as he wanted to be. He decided
that we needed to be aggressive and go on a third medication. I
went on Uptravi. For those in the PH community, you know that
that's a pretty hard medication to go on. There's a lot of side
effects. You have to titrate on it. For some people it's easier
than others. I had a very difficult time titrating. When you're
titrating, you're supposed to stay on a level just for about a week
at a time, and then you can step up. It took me much longer. For a
while, I had to stay at a level for about a month before I could
really titrate up again.
I wasn't sure if I was going to even be able to handle going to the
max dose, which is 1,600 micrograms twice a day. I got stuck at
like 800 micrograms. I really had a hard time with it. I was very
sick from the medication, but ultimately those side effects
dissipated and I was able to get to the max. It's really changed my
life. I'm so glad that Rich convinced me that I needed to go up to
a third med and get to that level on the medication, because I've
now seen a vast improvement. We did another right heart
catheterization. My numbers are down. My top number is now in the
mid-forties. I want to say 45. That's a big difference from 145
when I was diagnosed.
It's still considered I want to say moderate, but my six minute
walk test is very good. Very functional. He's happy with all of my
progress. I haven't had to go on intravenous medication yet. So
I've been stable where I'm at. But I still have good and bad days,
just like anybody with chronic illness. All the while, I'm trying
to be a mom and work full-time. I look healthy, so it's hard.
People don't always understand everything that I'm experiencing,
because they assume that I am a healthy 40 year old woman.
For me, the biggest thing is that I wanted to travel again, and the
pandemic and my health situation kind of took that away for me.
Travel was always something that was very important to me. Here in
November, I have my first international trip planned since I've
been diagnosed. I am going to Spain and to Portugal to celebrate my
40th birthday on November 17th.
My advice is to listen to that voice in your head or that gut
feeling. If you know that something is off with your body, don't
ignore it or put it off to the wayside. As a caregiver to my
husband, I never ignored any symptom that he voiced to me. I was
his biggest advocate, and I was really an aggressive advocate on
his behalf. If he said something was wrong, I was paging the
doctors. I was sending messages in the portal. I did not let it go
untreated.
It's so ironic that when it came to my own symptoms, even when
people were urging me to seek medical care after I had fainted, I
kept wanting to ignore it. I think I didn't want to face that there
might be something really wrong, because I think deep down I knew
that something was really wrong. I had always been an active,
healthy person, and it wasn't normal for me to be that fatigued and
that short of breath. I knew that I wasn't just overtired or
overworked or grieving. I knew that there was something going on
with my body. For anyone who has that feeling, go to the best
medical provider or at least your general practitioner. Try to find
a specialist like I have at UCLA, who can really do the workup that
you need.
To get diagnosed with pulmonary hypertension, you do ultimately
need to have the right testing and the right heart catheterization
to confirm the diagnosis. I was lucky that at Long Beach Memorial,
they were a big enough medical center where they were equipped to
do all of those tests and had a cardiologist and a pulmonologist
who were well versed with pulmonary hypertension and knew to give
me that workup and begin my journey with the diagnosis that I was
given in March of 2020.
My name is Katie Coman, and I'm aware that I'm rare.
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