Dec 6, 2022
Pulmonary hypertension patient, Cat Macera, discusses her diagnosis that happened during Covid and how her background in the medical field helped her become a strong advocate for herself and others.
My name is Cat Macera, and I'm from upstate New York. My
connection to pulmonary hypertension is I am a patient, and now a
very strong advocate.
In 2020, I was actually taken to the hospital by an ambulance
because I had difficulty breathing. I couldn't make maybe five
steps, and I was so winded I had to stop and sit for 10 minutes or
so. They did find fluid on my lungs. Eventually, they just
considered me as congestive heart failure and then did a right and
left heart catheterization and found mild to moderate pulmonary
hypertension.
I was in the hospital for 10 days. They sent me home, and that was
all I knew about pulmonary hypertension. I was sent home with a
bunch of meds. I didn't have any trouble in my recovery at the
hospital, but when I came home, I had trouble climbing the stairs
and carrying laundry baskets or cleaning house. A lot of tests were
not being done because it was Covid, so there were a lot of delays
in deciding what was going on with me. But I chugged along. I
started working out because when they sent me home they said, "You
need to lose some weight and exercise and diet." That's what I
did.
I was familiar with pulmonary hypertension because I worked in the
medical field for about 20 years. But I had figured that I was too
young to experience that because there wasn't a lot of information
out there about it. I graduated nursing school in 1983, so I think
that was probably just about the beginning of pulmonary
hypertension. I didn't get to have any other tests done. I didn't
see an actual another doctor until June of 2020 to discuss most of
my symptoms, but I was continually short of breath. So it was
interesting because Covid prevented things, but it also sort of
gave time to doctors to look closer to what I had been diagnosed
with.
In October, I was actually sent out and they did the usual, is it
asthma? Is it an allergy? Could it be COPD? So more testing. That's
where things started changing a little bit more because COVID
[restrictions] had released a little bit more where you could have
other tests done. You could go in and get an x-ray or an MRI or
those kind of things.
In January of 2021, I had another right heart catheterization done
and that's when they discovered that I had actual pulmonary
arterial hypertension, which was actually the cause of my breathing
difficulties for almost a year. I actually switched on my clinical
side, so I look at it very clinically. I try not to let it
overwhelm me too much because I know eventually there's going to be
answers and there's going to be treatment. I have no doubt in my
mind that I will have the best care.
I was very lucky to get diagnosed very early with this disease,
very early. So much so that we weren't really sure how I would show
up when they did the right heart catheterization, but it did show.
But having some knowledge I think gives me a better edge of
communicating with doctors, and being able to ask perhaps the right
questions to move forward. I know how to advocate for myself
properly. As a patient, it's a little bit different. You got to be
little bit more different because you are patient. I have run into
many members of the medical field that really don't understand
pulmonary hypertension. So I really encourage them to reach out to
somebody that can direct them better about exactly what pulmonary
hypertension is and how many types there are.
I do think my medical background has helped. I can say that it's
been tough no matter how you look at it. Life has changed for me.
Friends are not the friends that were there before. Especially
during COVID, your social life had changed. But now two years
later, my social life is improving. One, because my health has
improved for the most part. Medication has helped. I also had to
have an adrenalectomy in this process that had caused some
problems. So I'm just recovering from that. But I can see where
this would cause depression in a lot of people because it becomes
overwhelming. There were times when it was overwhelming for me
because I got frustrated with, well, it's not going quick enough
for me.
As a nurse, we never thought about it that way. But as a patient,
it doesn't go quick enough. So I can understand and I would
advocate that. Doctors, nurses in the field that work with PH
patients, be a little more patient with them when they start to
lose their temper a little bit or are frustrated, because time is
different for a patient than it is for the medical field.
I come from a very small area. I think there was only one other
person that I met in this local area. When I say local, within 50
mile radius, that had pulmonary hypertension. I had asked her if
she would be interested in starting a group, just at least so the
two of us would have a stronger support system. She wasn't really
interested. She was new. She was probably not as new as me into it,
but she was new to it. But she wasn't really interested in it. I
think some people just struggle with getting into a group wondering
if they'll fit in or not. I have not gone into a group, so it's a
little difficult for me to participate in a lot of things that
normal people participate in.
I'm up at 1:00 in the morning and usually I'm sleeping by 3:00 in
the afternoon, so my hours are very strange. Most of my activity
begins very early in the morning. So no, I have not gone into a
support group, but I imagine I would go into one if I felt I needed
a little bit more. But I'm so early on and very lucky to say that
my pulmonary hypertension was very early caught on, so it's not
probably as bad as many others have it. When I was in nursing, I
worked 11:00 to 7:00, so I'm used to those hours. But after I
retired from nursing, I went into baking and those are some really
weird hours. So it's just hours that I've done for 20, 30 years so
my body's used to that.
When I was diagnosed with the pulmonary arterial hypertension, my
doctor out in University of Rochester had asked me if I would be
interested in doing the six minute walk study and so I participated
in that. I think they're working on a second part to that study, so
I should be entered into that again. As I told my doctor, I said,
"Any study that comes up, please let me know if I'm eligible to be
part of it." The only way to defeat this disease is studies. We
don't have enough studies. We don't have enough people that are
[participating] really, because it's very rare, as you know. So the
more studies we can get, the more we can discover, hopefully cures
or better treatments or different treatments.
If I could give any advice to any patient with PH, it would be that
the only thing that pushed me forward is every day, actually every
hour, because I started out that I could only walk 250 steps
without being exhausted in the beginning. I said, "Okay, the next
hour we'll do it again. The next hour we'll do it again." So it's
just whatever steps you can take forward, any forward movement is
great movement. That's not backward movement. It's forward
movement. Just keep moving forward. But most importantly, learn to
forgive yourself if you can't get up and do what you did yesterday.
Be patient with yourself as well as you would be patient with
others.
My name is Cat Macera and I'm aware that I'm rare.
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