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My 2024 Indianapolis Kidney Walk Fundraising Page

Natalie Rafano
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Natalie Rafano

Please join me in supporting the 2024 Indianapolis Kidney Walk fundraiser.  All proceeds will go to the National Kidney Foundation, a foundation that is important to both Bryan, Bryson and I, and our families. 

There have been many exciting life events that have happened in the last year… As many know, Bryan and I welcomed our baby boy on August 5th and celebrated our one-year wedding anniversary the next day. What many do not know, is that during this time, our family was also navigating a very difficult health challenge.  Bryan had been experiencing lower back pain, something he attributed to a golf injury.  In working through that injury, we found out that Bryan had VERY high blood pressure that was not responding to BP medicine.  After self-advocating for answers, Bryan went and had a full blood panel done.  The bloodwork showed a few alarming results, and we were sent to a Nephrologist, a kidney specialist.  While working with the Nephrologist, we were able to rule out a variety of different auto-immune diseases however, we still didn’t have the exact answer, which meant a kidney biopsy was required. On October 18th, we went up to Indy for the biopsy, within 24 hours we finally had an answer.

On October 19th, Bryan was diagnosed with IGA-Nephropathy (IgAN).  IgAN is a rare disease that causes kidney damage and decreases the kidneys’ ability to filter waste and fluid which in turn, can cause damage to the kidneys. There is no cure and it can only be diagnosed with a kidney biopsy. In Bryans’ case, we found out that this is something that he has had for a very long time, that was missed in previous bloodwork, and has slowly been causing damage to his kidneys.  We are lucky that we found it when we did.  Our Dr. indicated that if we hadn’t, there was a very high chance that the only way we would have found out is WHEN his kidney’s failed…. a very FRANK and scary conversation to have had. 

We feel very fortunate for Bryan’s Nephrologist who has been wonderful.  He is honest and forthright but very, very diligent, and proactive.  He answers all questions and walks us through everything. Over the course of the last 6 months, Bryan has been on a myriad of different medicines trying to figure out the best course of action.  … we are thankful for great health insurance and for hitting deductibles because these medicines are NOT cheap, otherwise. 

With that being said, he is just days away from finishing his 6-month heavy prednisone treatment. This has NOT been an easy road, but Bryan is and has been a trooper.  Anyone that’s ever been on prednisone knows that it can be very difficult and hard on your body.  Bryan has continued to be nothing but the best husband and daddy during this time.  While we are not out of the woods yet, and there are still a lot of unknowns related to Bryan’s disease and its progression, our Dr is very pleased with things so far.  We believe that we are on a path to slow and stop the progression of his disease!
 
If you have read this far…. Thank you! 😊 It has been a whirlwind of a year… we look forward to smoother months ahead filled with lots of laughter, love and memories made. 
 
Please help me in supporting Bryan and all of those who experience chronic kidney issues.  There is a LOT of research to be done.
 
 

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