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Taking Control of My Journey: Self-Advocacy



My mom was a big advocate for me growing up as my dad worked full-time and she basically full-time took care of me. So, she took the lead at doctor appointments. When I was sick, mom and dad would take the lead talking to doctors. I remember I was so ill in the hospital, a doctor would come in, they’d look at me, ask me a question and I'd look at my mom like can you go ahead and answer that? I wasn’t in the lead of my care or my own advocate. And it wasn’t until after my kidney transplant where I got taught how important it is.

So, it was after my kidney transplant, and they come in with like a tub of pills. I was taking about 40 pills a day. So, it’s overwhelming and you’re trying to learn them and take them and try and feel okay taking all of them. And the nurse came in and I kind of did my normal routine of looking at my mom like can you help me figure this out? Can you? What am I taking, that type of thing. And the nurse looked at me and she was like, nope. And she’s like you need to learn this. You need to know why you’re taking them. And I was 19 years old, and at first, I was like I don’t like her. And it was the best experience, because that hard love that I received that day, I was like, okay, I guess it is my turn. I guess I do need to learn that. And I think that that was the pivotal moment and switch of me realizing that it’s time for me to speak up and me to learn what’s going on. And then, I just blossomed from there of going from a pediatric patient to an adult patient.

In my 30s, I started to get sepsis infections. When I went into the hospital for these sepsis infections, it would be an MRI, a CAT scan, all of these tests that they would do, lab work, and they just kept repeating it every time I had sepsis. And I'm like this is not working because we’re not getting answers. I never had a PET scan before, but I remember seeing that PET scans lights up infections on you, and I thought if we could just light up my infection. So, as I try and stress for myself and others the importance of being an advocate for yourself, I stressed this to all of my doctors. I said you need to put an order in for a PET scan. It took a team of people to help make this happen. It took me standing up for myself, my nephrologist for listening to me and writing the order. It took this super special nurse who just fought and tried to get it through as quick as she could. And I wound up getting transported from the hospital to an off-center site and got the PET scan. And I’ll never forget it. It felt emotional to get to that point. And what do you know? My liver lit up. It was the first test after a couple years that sent us down the path to getting my liver diagnosis. It was this feeling of triumph and excitement and knowing that we were headed towards progress and hopefully helping me recover. Interesting enough is they – my liver numbers never were high, so they never could trace it to my liver, and it was the PET scan that revealed it because I had no cysts on my liver, but I would up having bile duct malformations because of polycystic kidney disease and it’s really rare for this to happen. And that’s when I got referred to a liver specialist. And I was fortunate to get my lifesaving liver transplant.

It’s so important to stand up for ourselves, to listen to ourselves, to follow our heart and gut. We know how we feel. We’ve lived this journey our whole lives. So, when you go into the emergency room and just meet a doctor, they don’t know what you’ve gone through. And throughout the course of PKD, I think you really need to learn to speak up and be an advocate for yourself. That's so important

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