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My 2024 Indianapolis Kidney Walk Fundraising Page

Bryan Rafano
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Bryan Rafano

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

2023 was an exciting year for my family! My wife, Natalie, and I welcomed our baby boy, Bryson, into this world on August 5th, the day before our one-year wedding anniversary. Welcoming a baby into this world is an exciting time and brings the family together. But this was also a time when I began experiencing some medical challenges. It all started in February 2023, when I experienced a herniated disc in my L5, S1 vertebra. The pain from the herniation and the sciatica symptoms led me to see a doctor to address my symptoms. My doctor prescribed me medication to treat the pain and I was on my way.

In a three week follow up visit to the doctor, I experienced extremely high blood pressure of 180/118 without any physical symptoms. Although there is a family history of high blood pressure, I personally had never experienced it. In an appointment to solve my back pain, I left with another issue that needed to be addressed immediately, my high blood pressure. The thought of going to the doctor for one medical reason and leaving with another had Natalie and I concerned what the cause of it was. After months of blood pressure medication and every two-week blood pressure follow-ups, my blood pressure was not going down. I was not responding to the blood pressure medication and my primary care doctor suggested I get blood work done.  She suggested that I have it done within the next 6 months to see how my kidneys were functioning.

To see how my kidneys were functioning?? Why would my kidneys be the issue to all of this? I was a young 27-year-old (at the time), who lived an active lifestyle. I, initially, pushed this to the side because I wasn’t experiencing any noticeable physical symptoms.

After Bryson was born in early August, Natalie and I went on maternity/paternity leave. We thought this would be the best time to go get that blood work done, the GP had suggested.  To our surprise, we found out that my kidneys were functioning at 40% and I was referred to a nephrologist.

I never heard of a nephrologist and couldn’t even pronounce it correctly for several weeks. In our first appointment with the nephrologist, I came to find out that my kidneys were severely damaged and there was something causing this damage for a long period of time. This was something that you don’t want to hear in your first appointment with a doctor. The stress of dealing with a newborn at home plus the adding a mystery medical issue was not a great combination and took a toll on me mentally. A kidney ultrasound and a full autoimmune bloodwork panel were all negative, so what could the issue be? What was causing my kidneys to slowly lose function?  We watched as my numbers dropped, every two weeks, while Natalie and I had frequent visits to the nephrologist. My nephrologist suggested I get a kidney biopsy in Indianapolis to get to the root cause of what was damaging my kidneys.

On October 18th, my right kidney was biopsied in Indianapolis. No more than 24 hours after my biopsy, I received a call to visit the office that day to go over my biopsy results. Not knowing what to expect drove the anxiety levels up for Natalie and I, but thankful we will find out some answers. Upon meeting with my nephrologist, I was diagnosed with IgA Nephropathy (IgAN) and stage 3b Chronic Kidney Disease (CKD). IgAN is a rare autoimmune disease that attacks the kidneys and affects how blood is filtered in the small blood vessels of the kidneys. Over time abnormal proteins get clogged in the filtering unit (glomerulus) inside of the kidneys and causes damage, limiting the kidney’s ability to filter waste. One of the side effects of kidney disease, specifically IgAN, is a condition called proteinuria, where protein leaks through the kidney filters and into the urine. Proteinuria is one of the signs that doctors can monitor in the progression of kidney disease. It’s estimated that 20%-40% of patients who have IgAN will develop end-stage kidney disease and will require dialysis or a kidney transplant in order to survive. Based on the findings from my biopsy, 40% of my kidneys were fibrous (dead cells) and without treatment I had a 70% chance of being on dialysis within the next few years. When first diagnosed, my proteinuria levels were 4.87g of protein per day. To put this into perspective, the normal amount of protein in the urine is zero to 50mg per day and mine was almost 100 times the normal amount.

Unfortunately, there is no cure for IgA nephropathy and is something that I will have to deal with for the rest of my life. To effectively tackle the autoimmune response, the best course of action that was presented to me was to go through six months of a strong prednisone treatment, with the mix-in of other medications to assist with the other side effect and other complications of the disease. The last six months have been long and hard not only physically, but mentally. This period of my life was supposed to be exciting with a newborn, yet it was a very scary and challenging time dealing with this disease and the uncertainty if I was going to respond well with the treatment. I am thankful for my friends and family for being my support system through all of this, but most importantly my wife Natalie. She has been the best supporter of mine and has been there by my side every single day through this tough time and is not afraid to pull out all the questions every appointment we have. You and Bryson put a smile on my face everyday when times have been tough on me mentally and I can’t thank you enough for what you do.

After six months of treatment, I am finally off prednisone and managed to decrease my proteinuria down from 4.87g to 0.32g which is a great accomplishment! This is a great sign to slow the progression of the disease and to take control my health in the right direction. In addition to the prednisone treatment, I had the opportunity to begin a brand new IgAN medication called Filspari during my treatment journey. Filspari is the direct result of donations and fundraising for clinical research and clinical studies to provide medication to patients with IgAN to take control of this disease. 

After recent labs, my kidney function has not made significant improvement than expected. With the no significant change, my kidney function is sitting at 28% now and I'm hopeful that it will increase. I will be starting a new recently FDA approved drug called Tarpeyo. Tarpeyo is a steroid drug that is specifically designed for adults with IgAN. Without support for clinical studies and research, this drug would not have been approved earlier this year.

Please show your support and help me hit my fundraising goal to provide more research opportunities to the National Kidney Foundation. There is still a lot of research needed to be done to help those who suffer from kidney disease. Natalie, Bryson and I, as well as family and friends, will be walking in the 2024 Indianapolis Kidney Walk Fundraiser to spread awareness about kidney disease. Thank you for your support!


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