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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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Sarah Mironchuk - phaware® interview 337

Aug 11, 2020

Pediatric pulmonary hypertension caregiver Sarah Mironczuk discusses her daughter Bee's road to a PAH diagnosis, grappling with depression and the importance of advocating for your child.

My name is Sarah Mironchuk. I'm from Milwaukee, Wisconsin. My connection to PH is through my nine year old daughter who was diagnosed in 2017.

She was a very active little girl. She did Taekwondo, riding bikes. It was her favorite things to do. In 2016, I started noticing her slowing down and not being able to keep up with Taekwondo and complaining of leg pain. I asked her pediatrician about it at the time and he always had an excuse about it like she's developing asthma, she's got growth spurts in her legs and that's totally normal. As 2016 continued, she progressively got worse, where he did kind of generic asthma tests on her and prescribed her inhaler. I noticed every time that she took the inhaler, it wasn't working. Then further down 2016, she started losing a lot of weight and becoming very sweaty. She started not even being able to walk maybe two blocks. What really took hold was when she couldn't even walk half a block.

One day I noticed her lips were looking really blue and she was very pale and sweaty and I could see her heart pumping through her chest. I could visually see it. At that moment, I decided our pediatrician doesn't know what he's talking about and I researched and found a younger pediatrician, someone a little fresher who maybe could help us out better. I got a second opinion and that pediatrician listened to Bee's heart. I guess that day she had a valve leaking and [the doctor] heard it immediately and told us we needed to see a children's cardiologist right away. The next day, our whole lives changed.

We went to one cardiologist and he immediately wanted to get many opinions from other cardiologists. So we spent several hours doing that. Then we got referred to Children's Hospital. At first, they couldn't tell me if it was cancer or something else. There was a whole maybe day or two that I thought that maybe my daughter had cancer. Then that was quickly ruled out, and we starting to see the PH team at Children's Hospital. Then we got a catheterization procedure done very quickly and she was their emergency case. Since then, it's funny because now we get pushed for emergency cases and I can completely understand. But on that day, Bee was the emergency case. They looked at all of her pressures and it was just very bad. We sat in that room and were given the news.

We're fortunate, I guess, if you can be that Bee's condition was still in the life threatening mode and still is today. So we were able to catch it before it became terminal. So the treatment was very aggressive right away. I feel very fortunate that we got Dr. Stephanie Handler, who had been working in California for many years and who had recently just come to join Children's Hospital in Wisconsin. So Dr. Handler had some pretty aggressive ideas.

I went on board, I trusted her and Bee started on Subcutaneous Remodulin pretty much immediately. We stayed in the hospital while she got titrated up. Then we went right with Lasix and Sildenifil. At that time, everything was all oral treatment. I mean, we were told that she probably had it for a long time, but the symptoms obviously didn't show until she was way more severe.

It's been a really wild ride. We've gone from everywhere from sub-Q pump to different central lines. Fortunately now we're a bit, I feel a different point, we are on oral meds and Bernadette has been a trooper through all of this. She's been so strong and so understanding through all of the long hospitals stays and the adjustment for life for her. I think honestly I probably took the adjustment for our new life way harder than she did. I went through a lot more grief. We did have to see a therapist for a while. Admittedly, Bernadette had to deal with some depression and some anger issues, behavioral issues, trying to understand what was happening to her. We're just in a very unique because position, where not only is my daughter rare and has idiopathic pulmonary arterial hypertension, she's also going through her own self-discovery of becoming more gender neutral.

Bee was diagnosed when she was in first grade and we basically missed a lot of first grade and second grade while we went and stayed in the hospitals and going through various different treatment methods that were best for her. Her skin became very sensitive and she couldn't physically tolerate the Tegaderms and the Remodulin burns. It became very daunting with every time that she got sick or anytime that she would scratch, she was afraid that everything was getting infected. Then her fear would grow, because she'd know that a visit to the hospital, probably meant we were staying in the hospital for an extended amount of time and that was the truth. That really happened.

So it was very stressful on her.  I would do my best to try to make it as fun as possible and Children's Hospital is incredible about making children's stay more fun, but she missed a lot of school and fell behind. Luckily, she hasn't had to do a lot of tutoring or making up. Now that she's nine and in fourth grade, she's actually finally catching up with all the other students and her school has been pretty understanding about that.

With the depression, it was more just trying to understand all things and the changes she was going through and how to put them into words. As a mother, it was extremely difficult and it felt very unfair having to sometimes feel like being asked to hold your daughters health in your hands. If anything became infected I felt like it was my, fault, like I didn't do something right. I'm a pastry chef by trade, so some days I was like, "I'm not a nurse. This is so much pressure to ask me." And that would affect my mental state as well. We got to the point where we found our groove. We would put on happy music and we would listen to Alexa while we would do it. We find our balance and our peace as we've worked through different dressing changes and different medication changes.

At her age having a sub-Q pump and having that giant central line, like that giant pump, it impeded her ability to just naturally be a child. Right? We couldn't have spur of the moment water balloon fights, spur of the moment water gun fights. We couldn't go to the water park, showering and bathing. I mean showering honestly became impossible. So it was sponge baths. This is a little girl who was born in California and grew up swimming in a pool. She was just a water baby from birth. So that was probably the hardest transition for her, not feeling like that she could have a childhood and be as kooky as the other kids, because we had to watch for her site and you had to watch for her pump. We had to make sure one of the other kids didn't accidentally pull on her line. We would make special vests and shirts and backpacks for her. I would scour the shopping malls and try to find really cool, small Star Wars backpack that she could wear. I mean I look at what other families are going through and I feel really fortunate that she responds so incredibly well to her treatment.

Definitely be an advocate for your child. If you feel like your doctor is giving you the wrong advice, don't be afraid to get more advice. Get a second opinion, get a third opinion. Get a fourth opinion. Because we are the only advocates that our children have. We have to push to get them the kind of care that they need. Honestly, take it one day at a time and know that you're not alone. Because some days it's going to be really hard and exhausting. It's worth changing our entire lives around to keep our children alive as long as possible and give them the quality of life that you can and give them the best quality of life that you possibly can.

My name is Sarah Mironchuk and I'm aware that Bee is rare.

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