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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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Suzanne Ransom - phaware® interview 272

Aug 13, 2019

Pediatric PH Caregiver Suzanne Ransom on advocating for her daughter's rare disease diagnosis and adjusting to her "level of hard."

My name is Suzanne Ransom and I am a pulmonary hypertension caregiver.

I was pregnant and I was about 27 weeks. When they were doing the measurements, they're like, "Your baby seems a bit small." They sent me for the giant ultrasound all over again at 27 weeks. They said, "It looks like your baby has an infection around its stomach and heart." They sent me down to maternal fetal medicine and they brought in a pediatric cardiologist. They examined the stomach and the heart and they said, "Her heart kind of looks like a jellyfish. It's not kind of doing the in and out thing." They pumped me full of steroids and they said most important thing for her at this point is to stay inside. Her lungs need to grow. I was in the hospital four days a week, all the way to 37-1/2 weeks. By then they said, "Okay, inside to outside is about equal at this point."

We got her out, she went straight to the NICU, but was only there for four hours. They said she looks kind of the same as she did inside, but at least now we have an actual heart pumping, but the right heart is enlarged, and so something still isn't right.

We spent the next eight months ruling out cardiomyopathy, and arrhythmia, and holes in the heart, and congenital defects. At eight months, he said, "Let's do a right heart catheterization," So we did that. My doctor said, "I think your daughter has pulmonary hypertension. We're going to run one more CAT scan to do some structural investigation." that came back clear. He said, "Your daughter has pulmonary hypertension." I'm like, "Okay, now what?" He's like, "Well, we'd like to put your daughter on Viagra." I'm like, "No. No thanks."

He had told us way up front, he's like, "Stay off the internet." We were very good patients and we stayed off the internet. I'm like, "All right, we have this disease. We're not allowed on the internet, but I don't want to take your medication."

We spent the next six months exploring Eastern medicine, supplements, oils, diet. We did a whole lot of investigation on that end of it and it didn't fix it and it's been an amazing ride since. Now, she is on two orals and we have our specialist and we are going at life at about 110% right now.

We have a good support team at home with our church because we actually don't have family close by, and so we are kind of doing this on our own. But I love the Facebook group, having people that you can reach out to, and connect with, and grieve with, and celebrate with is always an amazing lift that we need and that hope that we need.

I think awareness is so important because we were told stay off the internet and so we had nothing. Once we finally did get on the internet, the information we had was so old. It's terrifying. If we can bring awareness to doctors and the public and get updated articles and updated studies, and updated research and statistics that are actually helpful, and useful, and hopeful for people, that alone is so uplifting, and encouraging, and helpful.

As a parent, you're kind of forced into this advocacy role because your month old, your years old, they can't advocate for themself yet. It's your job as the parent to have to do that. You don't need to do it on a political level if you're not ready yet, but you need to do it for your doctor or you need to do it for your family, because they have needs and they need to be met.

It's a lot to take in and you can't take it all in in one day. There are going to be days when you're like, "I've got this, I can do this." Then the next day you're going to wake up and you're like, "I can't do this. I'm so alone. I'm overwhelmed." You kind of just have to ride that oscillation up and down, and eventually you just find this new normal of operating.

Yeah, it's a harder normal than a lot of other people, but everyone's got their own level of hard. There are single moms and that's hard. There are people with other diseases and that's hard. This is just my hard, and that's the cards we got and we're going to play them and we're going to play our hand as best we can.

My name is Suzanne Ransom and we know my daughter is rare.

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