Mar 7, 2023
PAH and CTEPH patient, Kristine Setser details her PAH diagnosis
and her rare, life-saving thromboendarterectomy surgery which she
believed to be was her only shot at life.
Hi, my name's Kristine Setser. I am living in Michigan. I am very
connected to pulmonary hypertension, as well as a version of PH
called CTEPH (Chronic
thromboembolic pulmonary hypertension). I was diagnosed with
pulmonary hypertension about three years ago. I was 39 years old
and my life took a drastic change and turn. I've had to be nimble
and try to be resilient and move forward with my life with PH. I'm
very blessed to still being here today, thanks to some brilliant
and amazing doctors. So my story's quite unique. I have always been
quite athletic. I was working out about six days a week. It was
progressively becoming harder for me to work out. I was getting
this severe burning throughout my chest and throat. Well, it was
Covid [lockdown], so I wasn't able to actually see a doctor. I
talked to a pulmonologist. He said, "It's probably some onset
asthma." He gave me inhalers, but nothing was working. It was
progressively getting harder and harder for me to work out. As a
woman, and I shouldn't say that, I guess as anyone that's a working
parent, I just didn't have time to be sick in my mind. I blew it
off and was hoping it was just going to go away one day.
I walked up my front steps and I completely blacked out. In your
mind, you think, wow, this was not normal. It was only about 18
steps. Here I was someone that worked out for the past 20 years of
her life for six days a week, and I can't even walk up steps. I
immediately rushed myself to the urgent care and that's where the
doctor told me, "Listen Kristine, something is seriously wrong with
you. You have got to get to the emergency room like now." It was in
the midst of Covid, so I had to be dropped off at the emergency
room by myself. I was zipped into one of those rooms, like those
poor Covid patients. They didn't know what was wrong with me. Every
time a doctor or nurse entered the room, it looked like they had
just landed on the moon because of the gear that they had on at
that time. So it was quite devastating to get my diagnosis.
They came back a few hours later and said, "Kristine, you're very
sick. You have blood clots in your lungs. You have right heart
failure and you have a disease called pulmonary arterial
hypertension." I think I was in shock. I think that I thought that
they truly had the wrong girl. I'd never smoked a cigarette a day
in my life. I've lived off lettuce for the past 20 years of my
life. I was athletic and worked out, so that couldn't be me that
they're speaking about. I was totally in shock. But it was me and
my life completely changed from that day forward.
If I'm being honest, I was misdiagnosed. I think as a lot of
individuals are with this disease, which makes it so tough on
individuals with this disease to get the right diagnosis. I was
being treated at my local cardiologist for pulmonary hypertension.
Although they had found blood clots in my lungs, my cardiologist
thought that that was a fluke, I would say. So he didn't
particularly think that was the cause of it. They put me on those
heavy, heavy oral treatments. I wasn't getting better. In fact, I
was getting sicker and sicker by the day. They had given me about a
year to live because those treatments weren't working. We finally
decided that I need to go to U of M, University of Michigan, for a
lung transplant.
I went to U of M and at that point is where we went through all the
testing for a lung transplant. They explained to me the absolute
horror of a lung transplant. You might live five to seven years,
that's if I get lungs that'd even fit my chest and I'd be an immune
suppressant. It was a pretty horrific day until the doctor said
that there was a super rare surgery called a thromboendarterectomy,
that a few surgeons in the US perform and they actually had one at
U of M. So if I was a candidate for this surgery, I would be able
to move forward with this surgery versus the lung transplant. This
would give me a lot longer of a lifespan, because I have an
eight-year-old son. Well, he was five at the time of diagnosis.
So I really, really, really wanted to see my son graduate high
school, hopefully get married. Hopefully, I'll have grandbabies one
day. So this was my best shot at a long life. They said the surgery
was quite complicated and rare and dangerous, but in my mind, it
was my only shot at life.
I did the testing and my body had probably, I think they said close
to 15 or 20 blood clots. They were small and in the small vessels
of my lungs. They definitely said I was a candidate for that
surgery. So about three weeks later, I entered U of M Hospital to
progress forward. Most people, they give you a huge explanation
about the surgery, the risks that are involved. Essentially they
have to put your body in hypothermia for 20 minute intervals. The
reason for the hypothermia is due to the fact that they have to
stop all blood flow. The surgeon's going to go in and try to remove
any of the blood clots that he can manually reach within the
branches of your lungs. I was put on ECMO for 20 minute time
spans.
I was told the total time that they stopped my heart was about 130
minutes. Actually, I was told that that was almost like a record,
at that time. But I know the surgeon was doing the best that he
could to provide me with an opportunity for survival.
Unfortunately, that surgery lasted 11 hours and I never woke up
from the surgery at that point. I was having what they called
seizure-like activity. My body was seizing out. They weren't sure
if I had a stroke during the surgery or not.
I finally woke up eight days later after the surgery. I remember
hearing Dr. Half say, "Kristine, you had the surgery, but your
brain activity stopped." Because of the lack of oxygen to my brain
because of the surgery, I had a major brain injury. When I did wake
up from this surgery, most people leave the hospital around day
ten. When I woke up eight days later from that coma, I was
intubated, had a feeding tube, and I was told I couldn't walk,
talk. I couldn't even lift my head. I couldn't even speak two
words. Most of that was due to the brain injury.
My mouth wasn't working. It wasn't functioning with my brain
activity. I had to relearn everything. That was in the midst of
Covid. I wasn't even allowed one visitor. Here I am, imagine being
woken up eight days after surgery, not being able to walk or talk,
having no idea what's happening with your body and not he's seeing
one loved one. It was quite difficult on me. It was definitely a
time for massive prayer. I'm a huge Christian. I'm not sure if
listeners are as well, but that's what truly got me through. My
only visitor was the Lord, and I was in the ICU for about 41
days.
I don't know if it's fortunately or unfortunately for me, I was on
really, really heavy, they called them tranquilizers. You figure my
chest had just been cut open, they're trying to keep me as
comfortable as possible. I was hallucinating a lot and I guess
that's quite common for this surgery. In fact, they make you watch
a video on it prior to going into surgery. A lot of people
hallucinate. A lot of people are aware of their surroundings. I was
coming in and out of hallucinations. I remember hearing the doctor,
I remember my nurse holding my hand and we both sobbed together. I
think partially because I was the youngest patient she had,
probably in a long time, in that situation. But I do remember
hallucinating and thinking my son was there daily. I know this
might sound crazy to some people, but even though till this day, I
know that that's not true. Obviously I wasn't allowed any visitors,
let alone my son. I do think that it was the Lord putting my son in
front of my eyes to help me fight, because there were several days
I wanted give up. I didn't want to do this anymore. It was very
hard. I wanted to quit a lot. It was hard on me and not seeing one
family member. I truly think that the Lord put my son in front of
me, even though I sound like a nut job saying this. I do think that
helped me fight.
I wasn't going to not see my son another day. I was going to try to
lift my head up. I was going to try to stand. I was going to try to
do those things. As hard as they were, I was going to do it and I
was doing it for him. They finally moved me to a rehab facility in
Chelsea, Michigan. It was terrific. I was allowed one visitor a
day, so not my son unfortunately, but I was able to see my husband,
my identical twin sister. Those days were tremendous. Honestly, the
rehab part, the physical part, I'm used to being physical. The
learning to walk again, that was the easy part. The working your
brain and trying to get your brain to function again, that was the
hard part for me. Don't take this the wrong way, but I have an MBA
from Michigan State University. I have a degree in biology and
chemistry. I'm not a dummy. When they asked me to draw a clock, I
couldn't even draw a clock. I went from 12 to six and then
physically my brain stopped working. I think I put 17, 18, 19 on
there. I could not draw a clock if my life depended on it.
I couldn't do the days of the month. So that was the most difficult
part. If I'm being honest, I felt stupid. I felt like a dummy. I
felt like how am I ever going to give back to where I was? But
here's the interesting part. Three years later, I thought my MBA
was the greatest achievement and I thought climbing that corporate
ladder [was important]. I'd led a hotel acquisition team for
science, engineering and technology. I thought those things were
accomplishments until you're faced with this predicament. I swear
when I could draw that clock all the way or when I took 10 steps
all by myself, those were my biggest accomplishments. It sounds
silly, but you can take all my other accolades.
I'm a fighter, I'm a survivor, and I did those things and that's
where I'm at today is to share this story, to keep fighting. Hard
stuff's going to happen, and today I am thriving. I go to the gym.
I'm still on disability because sometimes my mouth doesn't work or
my hands, but I do what I can and I appreciate every day. I will
always have CTEPH. That's not something that goes away, but my PH
is significantly down. The right side of my heart is not as
enlarged. It's slightly enlarged.
I should go on to say in addition to that surgery, the
thromboendarterectomy, because my PH was still quite severe after
that surgery, I went on and had eight more surgeries of the balloon
pulmonary angioplasty. They went in through my groin eight
different times and tried to remove the blood clots that way, so
that was extremely helpful as well.
I tell everyone, get a second opinion. I wouldn't be here today if
my doctor wasn't humble enough to know that this is a super rare
type of disease and he was okay with sending me to the experts at U
of M. He was okay with not knowing that he didn't know what my next
step would be and I'm so appreciative for that. The second thing I
would say is yes, 100% if you had the option, do this surgery.
My story's unique. Most people wake up, their home in 10 days. Yes,
it's painful, you've got your chest cut open, I've got wires now in
my chest. But I've got a cool scar and I tell people all the time,
scars are awesome. My prognosis of life 1000% different than when I
first got diagnosed. I'm hopeful to continue on to survive and
thrive and share this disease with the world. It needs more
recognition. I think that it needs more specialists out there and
more help. I know the medication is ridiculously expensive for
some, I just feel like it needs to be recognized more.
My name's Kristine Setser and I am aware that I'm rare.
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