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Most of us take the ability to exist for granted but for Rohana Miller, staying alive is a constant struggle. Prior to her diagnosis with CKD, she endured maximum doses of radiation after chemotherapy in her cancer treatment failed. Today, she works very hard at strengthening her body through a holistic approach, and in this introductory post, she will share with us the importance of being a ‘pro-active patient’ and her inspiring story in the fight against kidney disease.
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When people who know my medical history comment on how lucky I am, I emphasize that surviving a chronic disease is not just a matter of luck. In fact, it’s a challenge for me not to immediately step onto my soapbox and deliver a passionate discourse about the importance of being a pro-active patient. Sure, there are those patients who just follow doctors’ orders and survive. But, they are not the majority.
The patients I have seen who beat tough odds and were presented to the cancer center tumor boards as spontaneous remissions, for example, are often those who took the initiative and made holistic changes to their lifestyles nutritionally, socially, spiritually, psychologically, and more. They educated themselves about their illnesses. They analyzed how to augment their medical treatment to support their health. They communicated with their doctors openly and honestly about supplements and other measures they were using. They themselves became a part of their own medical team. Because of their honesty and dedication, these patients became “miracle survivors”. I am one of those miracle cancer survivors. And now, I am a recent kidney transplant recipient and that’s yet another miracle I hope will inspire other patients like me.
Over the past 6+ years, I’d been educating myself about kidney disease on a daily basis and subscribed to many information sources and news alerts on kidney disease management.
In July 2012, my primary care doctor phoned me at home. She had never done that before. She told me that my GFR had dropped to 13 and I needed to start dialysis. I was diagnosed with Stage 4 CKD in 2007 as a result of Cisplatin Nephrotoxicity, caused by the chemotherapy I received back in 1981.
I remember being terribly sick–I could not walk without intense pain, was constantly breathless, and feeling weak. I worked very hard in fighting to maintain my kidney function in Stage 4 for over 6 years. But still, what I feared the most (dialysis) was about to happen.
I knew dialysis was not going to be a long term viable option because I recently suffered a stroke (which fortunately did not affect my speech or walking). I also believed my heart would not be strong enough to withstand the trauma of dialysis for long. I really trust my intuition when it comes to my own body and my goal all along had been to get a kidney transplant.
It was clear to me and my family that my condition was worsening rapidly during those months leading up to July 2012. I could feel myself dying.
The Turn Around
I consulted a naturopathic doctor who specialized in kidney disease. She recommended a probiotics dietary supplement called Renadyl™. I ordered it and began taking it immediately. In 2-3 days, I knew I was improving. When you reach Stage 5 ESRD, its easy to feel the difference when your GFR goes up or down. I asked my nephrology team to give me a week to see if my condition could improve enough to put off dialysis. My nephrology team agreed and 5 days later, my lab results showed my GFR had climbed from 13 to 18! A few weeks later, it rose to 20. My naturopathic doctor also sent me published clinical trials on Renadyl™ so I could show it to my nephrology team. They were very impressed and delighted with my results.
I managed to keep my GFR stable and without dialysis for the 6 months it took to find and test a living donor. I beat the odds and was able to get a kidney transplant in early 2013. Now, I have the joy of continuing to be a grandparent to my 4 beautiful grandchildren! 32 years ago, I had only a 30% chance to live to age 40. Recently, my nephrologist told me that when he first met me six years ago, he did not want me to tell me back then, but I was in such poor shape that he “did not think I would make it.”
How I got here is a long journey…a journey in which I experienced the importance of being a full participant in one’s own health and recovery process.
I look forward to sharing what I learned in the hope that it will help other patients and encourage you to do the very best you can for yourself in managing your kidney problems.
Remember, everyone’s body is different. Your results may be different from Rohana.