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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 & Thursday!

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Monica Penaranda - phaware® interview 152

May 8, 2018

Monica Penaranda is a long term pulmonary hypertension patient from California. She was diagnosed with PH nearly twenty four years ago. In this episode, Monica discusses her near death experience due to a high-risk pregnancy and how participating in clinical trials has prolonged her life.

My name is Monica Penaranda, and I'm from Whittier, California. I have had PH for almost 24 years.

I ended up, at 16 years old, getting pregnant. As if that wasn't enough of a shock for my family, also found out that I had something enormously wrong with my heart. I went to high-risk pregnancy doctors, everywhere told me the same thing, both mom and baby won't live. Back then, the cases were as followed: mom dies, baby dies. It was a pretty grim diagnosis.

In my fifth month, I ended up in the hospital. My baby was taken from my womb, and three days into it is when I almost died. My dad had just went back to work because I had been in the hospital for a couple of weeks. My mom was alone with me, and they pulled her to the side and told her, "Josie, we're very sorry, but your daughter has hours to live, if that."

A physician that was taking care of me, he just so happened to attend a seminar where my current doctor had spoke of pulmonary hypertension. Back then, it was such a rare disease. There's very few cases brought into ER, so ER folks didn't really know how to handle me. Because he had just seen my doctor, he was able to stabilize me over the phone and get me transferred by ambulance to UCLA, where she was practicing medicine. From there, it was just this fast spiral into a new world. In three days of being transferred to this other hospital, I was put on IV medication, and it was still very new medication back then. I went from not being able to roll over in bed to being able to actually stand up and use the restroom, so it was a huge difference. We had this renewed sense of hope that maybe I wasn't going to die.

From there, my life just drastically changed. My son didn't make it past minutes after they delivered him, so I do have a baby in heaven, and he's my guardian angel. I was told that if I hadn't gotten pregnant that I possibly could've died of a massive heart attack, and they would've never known why because I did have that heart problem, and the pregnancy magnified my atrial septal defect. Back then, athletes would just drop on the field with no explanation, so I was told that my baby was my angel. I have so many times where I see somebody that I think my son could've looked like. Everybody says, "Time heals," but I think through the years I've often wondered what he would have done in life, and where he would have been, the kind of person he would've become, so it gets harder. It doesn't get easier.

It took me about 10 years before I decided that I wanted to be an active member in the PH community. I went to a few support groups. In fact, my very first support group I attended, I was in the wheelchair, very young. My parents were pushing me, and I went to a support group led by Betty Lou Wojciechowski. She was one of the first persons that we met. She gave me strength, and at the same time, I had a lot of fear and doubt. I just kept thinking, "Well, no, I'm not like everybody else. I'm young, and they're all old," and the mentality that I had back then was I'm not like them. In reality, I was just like them. You're trying to deny the fact that you're diagnosed with a terminal, quote, unquote ... back then it was considered extremely terminal disease. You just try to pretend it's not happening, especially when you're young. I had a lot more tendencies to just pretend that my life was normal. I would hide the tubing in such a way that you couldn't see it, where it was coming out of. I would do everything I could for people not to see that I had a pump connected to my purse.

I just wanted to be normal. I didn't want to be set aside, or set apart, from anybody else. One day I had somebody tell me, "You know, that's pretty selfish, Monica." I was kind of puzzled. "Well, why is that selfish? I just don't want to go to meetings and feel like I'm going to be like them. I'm not on oxygen. I'm not wheelchair-bound anymore." I didn't understand. What's selfish about it? It was very simple. I could be giving hope to others. I was in their position. When I was diagnosed, my pressures were over 150. I was on constant oxygen. Oftentimes, I had the pump. I had my oxygen. I often had a heart monitor. I was the robotic woman. Back then, it was very uncommon to see somebody with all of the gadgets and devices that I had.

It took that, those words being spoken, that you're selfish, and it was like, "No, but I'm not selfish." So I said, "Okay. I'm going to go. You're right. I'm going to go." That was 14 years ago, and little by little, I started seeing we do need a cure. I can't just expect for a cure to happen. We have to take the steps to ensure that either I can get cured, or the person that gets diagnosed after me can get cured.

I think at this point, advocating, and doing support groups, and fundraising, all of these things are all for one goal. I am very sick and tired of losing friends and seeing friends suffer. If we all came together with one common goal, and that's to find a cure, to get more medications approved. I mean, come on, back then there's only one medication for pulmonary hypertension. One. Now we have over 14 and counting. I've been on trials, different clinical research trials, and I really feel they have prolonged my life. If I didn't say yes to being a part of trying new things, then where would I be? And how selfish would it be if I just sat back and said, "Well, I'll let the next person do what they need to do." I see all these people doing their part, trying to find a cure, doing their part to raise funds for research, and if I just sat back, then I couldn't look at myself in the mirror.

24 years ago, they went ahead and my tubes were tied, and I was told I would never be a mother, and I resigned to the fact that I would never have family, but God had different plans for me. I met my husband, who was a recent widower. I used to have a candy store, and he used to come to my candy store. We went on a date, and a year after that we were married. I married my husband when my son was three, and when my son, Bear, was five he asked me if I would adopt him and if he could call me mom. He has been my baby since. I taught, I potty-trained him. I taught him how to write his name. I did the whole, everything that I thought I could never do, or would never do, I did and then some. Room mom and just everything that I didn't think I was going to get a chance to accomplish, my son gave all that back to me, and then some. Now he's going to be 12. He is the light of my life, my Bear. He's this tall boy, and he's absolutely amazing.

When you're newly diagnosed with pulmonary hypertension, you hear a lot of cant’s. You can't this. You can't that. You'll never this. You'll never that. I absolutely do not believe in cant’s, won'ts. I think that when you are given limitations, you have to learn, yes, I have limits, but it's okay because everybody has limits in their life. It's just a different lifestyle. There's always something better, and there's always something that you can do with the limitations that you're given and still have a joyous life, still have a complete life, and still live life with hope. There is a lot of hope in the pulmonary hypertension world. There are so many advances in research that are happening. If ever there was a time to be diagnosed, with pulmonary hypertension, not that I would like to have this disease, but now is the time to have a disease like this because of the advances and the different things that they're coming up with.

I am Monica Penaranda, and I am aware that I'm rare.

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