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Voices of PKD: Paige Trischler

Paige&MomI was diagnosed with PKD in October 2015. I am the fifth generation affected by PKD in my family. My great-great-grandmother, great-grandmother, grandfather, great-uncle and my mom all have or had PKD. I am the youngest member of my family to be diagnosed with PKD.

My diagnosis came when I went for my cheerleading physical last summer. My blood pressure reading was 157/100 mm Hg, which made my mom concerned, and so she made an appointment with my pediatrician. My pediatrician, Dr. Mary, sent me for a renal ultrasound, and two days later, I was diagnosed with PKD.

PaigesoftballI am currently struggling to get my blood pressure under control, so I am seeing a pediatric nephrologist at UPMC Children’s Hospital of Pittsburgh. Since my diagnosis, I have faced some challenges with PKD. Changing my diet, for one, has been a huge change. I struggle with it because I cannot eat some of the foods I love, like pop (Pittsburghers’ name for soda), Flamin’ Hot Cheetohs and Starbucks. I miss these foods. My other challenge is trying to get my friends and teachers to understand the complexity of PKD. I may look fine on the outside but on the inside there are days of complete fatigue. There are days I need to take a break from sports and people just don’t understand.

I want to raise awareness about PKD. I want people to understand what our bodies go through with this monster of an illness. There are a lot of misconceptions. I want to be an active advocate for children and teens like me with PKD.

Paige cheerleadingPaige is 13 years old and lives in Pittsburgh, PA. She will be starting eighth grade in August. She is active in sports at her school, and is a member of the cheerleading squad. In past years, she has also been a member of the wrestling, volleyball and softball teams at her school.

Comments

  1. Javier says:

    Stay strong and positive little one.

  2. Christine Richer says:

    Hi Paige,

    It’s too bad you are faced with this disease at such a young age, but you’ve got lots of role models all around you to understand and help you through it one day at a time! The diet sucks, though, but again you’ll get used to it and eating healthier will help you fight the disease on your own.

    Take care, Chris Richer 🙂

  3. marco says:

    You have a very good attitude, Paige.
    God Bless you.

  4. Victoria says:

    Paige I’m so proud! I love your blog♡

  5. Great job…your family is so proud of what you are doing….im sure with your help..PKD..will get the attention it needs to rid it out……huzzz greataunt tammy..:)

  6. Brenna says:

    I was just recently diagnosed with PKD. I’m 19 and a mother of a two year old daughter. I’m the third generation in a row to be diagnosed. I also have an auto immune disease and a bleeding disorder, and tumor in my throat that I’m having surgery on in less then s month. I’m having a really hard time wrapping my head around it all as its all showed up in the last two years. I haven’t had a single day where I don’t hurt! And my fiancé can’t understand why some days I can’t hardly eat or why if someone hugs me to hard I’ll burst into tears. My right kidney had over 30 cysts and its 2 times the size of an average kidney. My left kidney is worse, it has fewer cysts but there larger, I have 4 that are larger then a dollar coin. And it’s 3 almost 4 times the size of s healthy kidney. Is there anyone that would be willing to share some adivse on how to coap with it all and how to help make family understand that just because you look healthy on the outside doesn’t mean your healthy on the inside?

    1. Wendy says:

      Brenna,
      I am Paiges’ Mom. It was a shock when I was diagnosed but even tougher when she was diagnosed. Take time to adjust to the illness. Educate yourself! It took me at least 6 months to adjust to knowing I acquired the gene.

      Look and see if there is a PKD chapter meeting near you. It is helping Paige and I with support of others who understand.

      Hang in there! There are people who understand. Hugs!

      Wendy Trischler

  7. Susan says:

    It’s important to follow doctors orders and stay as healthy as possible, but don’t let this disease run your life. Follow your dreams & know that life CAN be lived with this disease!

  8. Kala Williamson says:

    Paige! Thinking of you and great job sharing your story! Hang in there girlfriend and if you need us you know where to go!

  9. Tina says:

    Paige you are a very strong and smart young lady with such a wonderful family and support network. I admire how brave you are. I’m sure you are going to be able to help others who suffer from this condition. Prayers for you and your family

  10. Kristee Adams says:

    Paige,
    Sorry that I missed your post a few weeks ago. I am so glad I found out about it. I am looking forward to more posts from you and about your story. I am so proud and happy to have a young lady with such intelligence, insight, and spirit be a part of the Pittsburgh Chapter!

    1. Wendy Lee Trischler says:

      Thanks Kristee! The Pittsburgh chapter has been a great resource for Paige and I .

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