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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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Cat Macera - phaware® interview 395

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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