all Guest Post

Rare & Fatal Kidney Disease Survivor ~ 16 Yr Old Taylor, Founder Of ‘Be Brave Box’

July 13

Today I proudly present a guest post from Taylor, the founder and CEO of ‘Be Brave Box’.

taylor

Taylor is a 16-year-old entrepeneur, who contracted a rare and fatal kidney disease in 2011. By turning adversity into opportunity, she launched ‘Be Brave Box’.  Taylor now runs her own business designed to encourage and brighten the days of those living with & surviving chronic illness. Below is her story ~
16-year-old entrepeneur, contracts rare kidney disease, turns adversity into opportunity... Click To Tweet

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I was so excited when  Kristine told me that I could write this guest post. I’ve always loved writing in all forms, and to share my story and business through this blog is amazing!

My  story of chronic illness started almost 5 years ago.

Well, the confirmed diagnoses anyways.  On November 1st 2011 I sat in a Nephrology clinic at my children’s hospital. I was 11 at the time, and after a couple visits to a pediatrician for high creatinine was referred to Nephrology.  The pediatrician told us we were just going to see if I needed further testing. So my poor Dad  went to work while my mom and I went to this appointment. We were put in a room, and after dozens of questions, I was finally told that I had Chronic Kidney Disease. It’s crazy to think that on that one day my life would change so much.

The type of kidney disease they suspected I had was called Nephronophthisis.

rare genetic disease that causes high urine output coupled with the need to drink a lot of water. Basically, my kidneys  don’t hold water and filter everything out. I had a kidney biopsy done in December of that year which confirmed this.

After diagnosis, I faced a couple of different issues.

Mainly dehydration, which to many people isn’t a big of a deal, except when you can’t hold water it is a huge problem. Every 4 to 6 weeks for a couple of years I would need to go to the ER to get I.V fluids after having stomach pain, nausea, and terrible fatigue.

Sometimes the I.V fluids helped, and sometimes I would have to be admitted, and hooked up to I.V fluids for days before feeling better. My doctors didn’t know what else to do. They said they had seen people need to drink a lot of fluids before, but no one as bad as me. In the end I was drinking about 12 liters of water a day.

I was also severely underweight to the point of being malnourished.

We discovered this in March of 2014, and I had to have an NG tube. I hated it, and had to put it in myself once a month. Then in June, I had my first surgery to put a G tube in. This helped me avoid  dehydration for a couple months before I needed I.V fluids yet again. It really affected my  life, and it was hard to keep up in school and have a normal teenage life. In March of 2015 I  reached a point where I couldn’t handle the constant dehydration and feeling so unwell. My  doctors and I finally decided it was time for me to have a transplant.

May 22nd 2015 was the first step, I had to have my kidneys taken out.

I started dialysis since my kidneys would have continued to have trouble, although most people don’t have to have their  kidneys out. I then started dialysis through my peritoneal cavity (peritoneal dialysis). It is very complicated, but I was on the machine for 10 hours during my sleep, while having two exchanges  during the day. The surgery itself went well, but the healing process was hard and painful. I  was in the hospital for 2 weeks. It was a painful recovery, but I healed. I was always scared the machine wouldn’t work. This machine was my life line for almost 3 months. Without; the machine, modern medicine, and this procedure, I would not have survived.

August 11th 2015 I received a kidney transplant from my dad. The surgery was a success!

The recovery from this surgery compared to getting my kidneys out was way easier. My dad  on the other hand felt sick for about a week after from the pain meds.  The gift of life is truly  amazing. I can’t believe that surgeons can actually place someone’s kidney into another  person and have it work!

My biggest learning curve was trying to remember all the medications I had to take.

Immunosuppressant medication has to be taken exactly 12 hours apart. If you miss a dose  or take the medication late you can go into rejection, possibly losing the kidney, which  would make you need dialysis again. Basically how this medication works is that it “hides”  the kidney from your immune system.

If your immune system is too active it can find the  kidney and destroy it.

Right after transplant is when your immune system is the most suppressed. For 6 weeks I wasn’t allowed to go into busy places like grocery stores and malls. When I had to go to appointments at the hospital, which was a lot at first, I had to wear a mask.

Now almost a year later I’m finally getting the hang of things.

Remembering my medication is easier, and I am happy to say I haven’t had any rejection episodes! I still have some unresolved issues, but we are slowly trying to figure everything out. So a month or so after my  transplant I began sharing this story and my day to day life on InstagramI never knew before this that there were so many other people with chronic illness sharing, and connecting together.

This was when the idea of my company came upon me!

I always wanted to start a business, and being stuck at home it was a good time to start!

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I created the ‘Be Brave Box’.

A subscription box for those with chronic illness! ~ Every other month those who subscribe receive a  package in the mail with loads of fun stuff, such as:

  • inspirational items

  • crafts

  • and many other things that just make a bad day better!

I always wanted to start a business, and being stuck at home it was a good time to start! Click To Tweet

To check out ‘Be Brave Box’ {click here} or go to  www.bebravebox.ca ~ where you can see past boxes, and learn more about the company!

I love having my own business!

Meeting other people and seeing how much they like the box as much as I do makes me happy!

~ Taylor

Taylor Nadraszky, who has a rare kidney disease, Nephronophthisis and has started her own subscription box business to bring happiness to other youth struggling with chronic illness poses for a photo in her Airdrie Home Friday April 29, 2016 in Airdrie, Alta. Chelsea Grainger/Airdrie Echo/Postmedia Network

{Photo used by permission from Taylor Nadraszky} Taylor Nadraszky, who has a rare kidney disease, Nephronophthisis and has started her own subscription box business to bring happiness to other youth struggling with chronic illness poses for a photo in her Airdrie Home Friday April 29, 2016 in Airdrie, Alta. Chelsea Grainger/Airdrie Echo/Postmedia Network

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6 Comments

  • Reply Brandi Clevinger July 21 at 6:03 am

    Thank you for sharing your story, Taylor! What a dilemma you have gone through, but it seems to have a happy ending. What joy!

    I’m so glad you started a chronic illness subscription box. Last summer I was telling my husband that I wish there was a subscription box for chronic illness sufferers because we could all use some uplifting and encouraging. Good for you!

    I wish you continued success and wellness in the future!
    Brandi Clevinger recently posted…+Positive Parenting ChallengeMy Profile

  • Reply Nikki July 24 at 10:29 am

    Kristine, thank you so much for introducing us to this exceptional young lady. To have lived through this and survived is enough, but to also turn it around and create something to help others is really amazing! I wish her the best of luck with her health, life, dreams and endeavors, she is one to keep an eye on, isn’t she?
    Nikki recently posted…5 Swoon Worthy WordPress Theme Options.My Profile

  • Reply Deborah Davis July 25 at 3:43 pm

    I am so delighted that you shared Rare & Fatal Kidney Disease Survivor ~ 16 Yr Old Taylor, Founder Of ‘Be Brave Box’ at the Healthy Happy Green & Natural Party!Thank you so much for sharing your gems and for your support! Pinning and sharing! All the best, Deborah
    Deborah Davis recently posted…Traditional Chinese Massage and How It Compares to Other TechniquesMy Profile

    • Reply kristine July 25 at 4:46 pm

      Thanks Deborah, and thank you Taylor! ♥

  • Reply jose December 29 at 3:08 am

    Thanks for sharing the story very touching and informative

    • Reply kristine December 29 at 9:17 pm

      You are most welcome Jose! Thank you for leaving a comment 🙂

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