Exploring Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
Exploring Chronic Thromboembolic Pulmonary Hypertension (CTEPH)
CTEPH is a rare type of pulmonary hypertension (PH). In CTEPH, a thrombus (clot-like mass) gets stuck to the lung’s blood vessel wall and blocks blood flow. It is frequently under-diagnosed and frequently under-treated.
The most common symptoms are shortness of breath with exercise/activity, fatigue and tiredness or weakness – and a depressed mood. It’s difficult for a doctor to tell that you definitely have CTEPH, based on symptoms alone, because they are similar to those of other conditions such as pulmonary hypertension (PH). If a doctor suspects you have CTEPH, you would undergo some specialized tests. And if you’re diagnosed, your doctor will discuss treatment options with you, including surgery. Tune-in — to learn more about its diagnosis, symptoms and risk factors. And meet someone who’s living with this condition. We’ll also tell you about an incredible website, filled with great information and resources. You don’t want to miss this!
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0 -> (music).
Frequently under-diagnosed and frequently
16.66 -> under-treated, two phrases to describe a rare
life-threatening condition we're about to
21.08 -> discuss in our Behind The Mystery Rare and
Genetic Series. Our guests this morning are
25.66 -> Dr. Franck Rahaghi, a Pulmonologist with Cleveland
Clinic Florida, and Jessica Armstrong, who
31.99 -> is a patient and a rare disease advocate working
with the Pulmonary Hypertension Association.
38.17 -> Good morning to both of you.
Good morning.
39.84 -> Doctor, I want to start with you. We're talking
about a disease that is called Chronic Thromboembolic
45.039 -> Pulmonary Hypertension, CTEPH for short. What
exactly is it?
49.46 -> So CTEPH, or Chronic Thromboembolic Pulmonary
Hypertension, happens when perhaps clots form
56.01 -> in the legs, they go into the lung, and sometimes
they don't go away. They get stuck, and this
63.62 -> causes patients to feel short of breath, dizzy,
having chest tightness. And that's when they
71.14 -> have to really be aware of this, that they're
not supposed to keep having these symptoms
75.64 -> after a few months of treatment. And if they
are, they should seek help because this could
81.57 -> be CTEPH, meaning the clot is stuck and the
pressures are remaining high. Now, about 1
88.92 -> in 25 patients with acute pulmonary embolism,
or 3.8%, may develop this condition.
96.369 -> And the symptoms, the shortness of breath,
the tightness, the difficulty breathing, they
100.52 -> look like so many other things. Myself, and
a lot of other patients that I know, have
104.88 -> been misdiagnosed first with asthma or COPD.
So it's so important to ask these questions
110.54 -> and to really keep pushing if you don't think
you have the right answer.
113.909 -> And how is it diagnosed because you're giving
me some symptoms that I can actually think
117.689 -> of some people that I know that feel that
day in and day out? So, how is this one diagnosed?
122.28 -> So there's really two sets of people. There's
two ways to get to this diagnosis. The most
125.759 -> important one, and the most prevalent one,
is patients with acute pulmonary embolism.
132.16 -> After you had a pulmonary embolism, if you're
still having symptoms and it includes shortness
138 -> of breath, you should make sure that they're
checking the pressures in your heart to see
143.81 -> if there is pulmonary hypertension, if the
pressures are high. Now the other set of people
149.12 -> are actually people who do go to their doctors
because they're short of breath. They do or
153.33 -> do not know if they have a pulmonary embolism.
They're found to have pulmonary hypertension,
158.47 -> but the work-up of the pulmonary hypertension
is not complete. So people forget to look
163.68 -> for clots in the correct way, which is with
a VQ scan, or a ventilation/perfusion scan.
170.84 -> So even in some centers the work-up is not
done completely.
175.069 -> Exactly and then, of course, the patient leaves
there not knowing what they have. Now Jessica,
178.76 -> let me bring you in. I know you were diagnosed
with CTEPH, and you were diagnosed in a very
183.599 -> far-away place. Tell me what happened, and
it was frightening moments for you I think.
187.47 -> Yes. So, I was serving in Afghanistan and
I suddenly collapsed.
192.14 -> Oh!
I was taken to a hospital and found to have
196.98 -> five pulmonary emboli. So they medically evacuated
me from Afghanistan. They took me back to
202.569 -> the U.S. where they were treating the blood
clots for a number of months, but I wasn't
206.94 -> improving. I had consistent and increasing
shortness of breath.
212.11 -> And you have no idea.
Yeah. I couldn't climb a flight of stairs.
215.489 -> I kept passing out. I was dizzy all the time.
So, I got orders to go back to Afghanistan
221.17 -> and I decided to seek a second opinion. So
I went to see another doctor who actually
225.9 -> did the ventilation/perfusion scan and a right
heart catheterization, and diagnosed my pulmonary
230.739 -> hypertension. At that point they told me I
had about five months left.
236.01 -> Five months left to live?
Five months.
238.22 -> How old were at the time?
I was 29-year-old.
240 -> Were you petrified?
I was. I couldn't even imagine being in that
246.569 -> place.
Because obviously before then nothing was
248.93 -> going on. Just suddenly this happens. I know
you have a strong message here. Your story
252.83 -> is so powerful about letting viewers out there
know that even if you have these symptoms
257.489 -> and you think it's nothing, you want to tell
them what?
260.09 -> The first thing is keep asking questions.
I made it to a good center that had expertise
265.5 -> specific in my disease. They knew what they
were doing and they were able to improve my
269.18 -> life very much. I'm doing wonderfully today.
So trust your body, trust your instincts,
276.12 -> and ask questions. If you've had a blood clot
and you're not getting better, especially
280.25 -> in your lungs, and you see that progressive
shortness of breath. You're tired all the
284.25 -> time. You can't climb a flight of stairs.
Ask the question because it might save your
288 -> life.
And I have more questions for both of you.
289.99 -> So stay right there please because when we
come back we're going to discuss more about
293.96 -> what support is available for patients with
CTEPH and caregivers as well. So stay right
298.979 -> there.
(music).
304.82 -> (music).
Welcome back, everyone. We've been discussing
309.38 -> a rare and life-threatening condition called
Chronic Thromboembolic Pulmonary Hypertension,
314.35 -> or CTEPH. Rejoining us are Dr. Franck Rahaghi,
a Pulmonologist and, of course, Jessica Armstrong,
321.08 -> who is with the Pulmonary Hypertension Association
and a patient as well. Jessica, let me bring
326.28 -> you in now. I know it's important to talk
about advocacy groups. You are part of one.
330.57 -> Tell me why it's important.
The Pulmonary Hypertension Association does
334.139 -> so much to connect patients with resources.
We have 245 support groups all over the country.
340.87 -> I can't tell you the impact it has the first
time you meet someone else who understands
344.699 -> your story and your experience exactly.
Because you feel so alone, right?
347.789 -> Exactly. It's such an isolating experience.
What is this thing? I've never heard of it.
351.979 -> Am I dying? What's happening? You need support.
We've got educational resources for patients
358.19 -> and medical professionals. We have a lot of
events. We do a conference every other year,
363.59 -> and I really encourage anyone who's interested
in learning more in visiting our website which
367.62 -> is PHAssociation.Org.
And Doctor, you see many patients who, obviously,
372.53 -> are diagnosed with this or maybe they don't
know what they have like Jessica is telling
376.509 -> us right now. Advice for patients out there?
Yes. Definitely if you have a history of pulmonary
382.639 -> embolism, to make sure you're evaluated for
pulmonary hypertension. If you have been diagnosed
389.069 -> with pulmonary hypertension, to make sure
that you've been screened with a ventilation/perfusion,
393.99 -> or a VQ, scan that is very sensitive for Chronic
Thromboembolic Pulmonary Hypertension. And
400.44 -> lastly, if you finally have a diagnosis of
CTEPH, to make sure that you have the advice
406.509 -> of an experienced group to know whether your
embolism is operable because that's really
413.78 -> the best way to go about helping the patient.
So, Doctor, it's important to note that it's
418.27 -> a manageable and potentially curable disease.
Yes.
421.94 -> Jessica, resources out there for patients
that maybe want more and need more to understand
427.009 -> more?
PHAssociation.Org for sure. CTEPH.com has
431.889 -> some patient information as well. We've got
printed materials that we can send you for
436.599 -> free both in English and in Spanish. And we're
celebrating CTEPH Awareness Day on November
441.5 -> 17th. So there'll be a lot of information
out there about that. Please check it out.
445.86 -> I'm on Twitter and Facebook, and I'd love
to connect with anyone who has questions.
450.31 -> You really want to spread the word don't you?
Absolutely.
452.41 -> Well then you can, let's see, I'm going to
read it out loud. You can "Bust CTEPH". There
456.37 -> you go. I like that.
Doctor, last-minute thoughts for anybody out
460.36 -> there.
Just really inform yourself. Inform yourself
463.11 -> and make sure you're getting help from professionals
that are familiar with the disease.
468.069 -> Thank you so much for your time. I do appreciate
it. And for viewers out there who would like
471.509 -> to learn more about CTEPH, where do they go
Doctor?
473.789 -> They can go to CTEPH.com. That's C-T-E-P-H
dot com.
478.449 -> Good to clarify. Thank you. And, of course,
for more information on this disease, you
481.879 -> can visit CTEPH.com. That's C-T-E-P-H dot
com, or our website, TheBalancingAct.com.
487.86 -> I love my bracelet. I'm going to wear it for
you.
489.229 -> (music).
Source: https://www.youtube.com/watch?v=902W36z3b28