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

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Catherine Falardeau - phaware® interview 370

Jun 9, 2022

Scleroderma patient, Catherine Falardeau, discusses her road to diagnosis and how a right heart catheterization, led to also being diagnosed with PAH, ILD, Raynaud's, and Pulmonary Fibrosis. Catherine recently participated in a 108 week clinical trial for the use of TYVASO® in PAH/ILD patients. The trial lasted into Covid, and received FDA approval.

My name is Catherine Falardeau and I have had pulmonary hypertension since 2017 when I got diagnosed. I was working as a contractor here in Florida, and I started experiencing shortness of breath. It got to the point where I could barely go to the mailbox anymore. I had gone to the doctors and they noticed some spots on my face. So they gave me an ANA test to test for autoimmune diseases. In 2015, they told me I had scleroderma. I didn't know what the heck that was. The scleroderma affects the collagen both externally as well as internally. Due to the fact that I started experiencing such shortness of breath, I went to a pulmonologist. They gave me pulmonary function tests, which I did horrible on. They found out I only had 52% lung capacity.

They sent me to a cardiologist. He did all kinds of testing. When I had my right heart catheterization in 2018, that's when he found out that I had not only pulmonary hypertension, but also interstitial lung disease along with GERD and Raynaud's and all the things that go along with that. At first, I was just freaked out. I didn't know what to do.

He brought up the fact that he was conducting a clinical trial with people that had PAH as well as ILD. The first part of the trial was you didn't know if you were going to get the actual drug or a sugar pill. After three months or so of the ending of part one of that study, I signed on for part two. Part two was you definitely were getting the drug and I could almost immediately start to feel a big difference. I wasn't quite as tired. I wasn't quite as short of breath. I still have coughing spells, but it's usually right after I take a treatment. That's how I found out I had the pulmonary hypertension.

I was depressed for about a year. I sought therapy during that time. Then I started making small changes in my life. For one, I had to become a sudden caretaker for my mom up in Massachusetts. I spent a total of three months in 2019 up in Massachusetts, not only taking care of her, but I kept getting sick in the process from the travel going back and forth and it was really hard. We finally convinced her to move down to Florida to live here in assisted living.

I'm still trying to battle along with the clinical trial and appointments and then COVID came along. It was 108-week study, and we were nearing around, I think it was 90 something when the COVID kicked in. Because of the isolation we had to carefully get to the point where I could get to the final phase, which was turning in all the equipment and doing the final tests, which I finally was able to do in September. The study officially ended in September of 2020. It was the use of TYVASO® with patients that have not only pulmonary hypertension, but also interstitial lung disease. The FDA did reach approval, and I understand that's moving forward.

I also participated in the genomic testing, where they will use my blood samples for future research and development of new medications. I think it's extremely important, not only for one as a person, but it gives you the ability to be able to participate in forums like this. I like to do this a lot to spread awareness. I participate in Rare Patient Voice as well, and I'm a PH mentor, so I help people that have questions. For example, my last one was, how do I apply for social security disability? I said, well, first you need to hire a lawyer is the best part, the best way to go around that. Don't try to go to SSDI by yourself. Chances are you'll be rejected.

If you want to go to therapy, I would recommend therapy for people. My first thought is having a positive attitude. What I try to do is I wake up and I write down three things that I appreciate about the day. You could do it at the end of the day, and just say one of the things, "Hey, I woke up, it's another day, it's a positive. I can go live my life." I feel it's important to journal your thoughts. I have a whole online journal. I find it important to keep your mind busy. If I'm not doing this, I'm doing volunteer work for a dachshund rescue group in Florida. I post the stories of the dogs and how they came to the rescue and how they could make your home better just by having a dachshund. They're loyal. It helps my mind because I do this using WordPress, which I taught myself. I was an IT person for over 30 years. I feel that those kind of projects are important to keep your mind off anything negative and stay focused on that you're living your life every day.

I don't feel like it's a death sentence and it shouldn't be looked at that way. I feel it's important for people not to get on Google and start searching for the years that you have left or whatever. It's important to be proactive, especially since I just turned 60 about making arrangements and things like that. I feel lucky that I also have my husband who's gone through all this journey.

Now I'm at the point as long as I take my medication and I go to my doctor's visits, I highly recommend that when the doctor gives you a drug, don't give up on it because it makes you cough or it has unpleasant side effects. I went through that when I first went on the medication for scleroderma, which is mycophenolate, which is pretty common among autoimmune diseases -- lupus and scleroderma and the like.

It's important to keep all your doctor's appointments. Write down all your concerns. For example, if the medications, make a list of side effects. And I did this after my COVID booster. I wrote down all the side effects I had, in case I get involved in a COVID study, that I could tell someone here's what happened to me after I received my booster. You need to write it down as it happens. Don't wait to get to the doctor's office and then they may ask you "How are you doing on the medication?" "Well, I had side effects." And then you may not remember each and every one. It's important to write everything down or type it if you're like me, and you can't read your own writing.

It's important to type everything up and make sure you keep good medical records. I have my medical records ordered by specialty and not by doctor, because I've found that I've changed primary care doctors three times and so it's best to just put PCP and put it in a filing cabinet. Or if you have an electronic method that works, you can always go to the PHA Association. On their website, they probably have something about it.

I know I participated in a webinar about the best medical records keeping practices. I also contributed by telling the audience how I do mine. Everybody might do theirs differently. Also keep a small folder of your doctor's names, your condition names, and all the medications that you take and keep it with you. You leave it in your car, if you have one, to just take it with you wherever you go, so that if something were to happen to you, a policeman or whoever jumps in can look through your stuff and flag if you're unconscious and can't speak for yourself. I think that's a very important thing. That would be my advice and stay positive.

My name is Catherine Falardeau and I'm aware that I'm rare.

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