Four years ago this month, I was diagnosed with Chronic Kidney Disease (CKD). At the time, I had never even heard of Kidney Disease. Nothing could have prepared me for that moment. That was the moment I was told I could not carry a child. That was the moment my dreams were taken away from me. I was scared and devastated and I had no idea how this diagnosis was going to change my life.
The diagnosis of a rare type of CKD called Focal Segmental Glomerulosclerosis (FSGS) came two months after undergoing an IVF retrieval and failed embryo transfer. Although there are many potential side effects of taking medication for IVF, FSGS, is not one of them. My nephrologist said that in all of his years of studying the disease and treating patients he never saw anyone who developed the disease following a medicated IVF cycle. What is more likely to have happened in my case is that the disease was already in my body but dormant. As many of us know IVF meds wreak havoc on the body and it was just too much for my body to handle. I developed a tremendous amount of inflammation and it set my immune system into overdrive. My body started to attack itself, specifically my kidneys.
It was incredibly frightening getting a diagnosis and hearing the words "no cure" and this is a "disease that you will live with for the rest of your life.” That was really all I needed to hear in order to take my health to the next level. As a Yoga teacher, I had always been very mindful of my physical, mental and emotional well being. But being a yoga teacher doesn't automatically make you healthy! I was prescribed several medications, including a daily steroid regimen (60 mg of Prednisone a day). I started taking water pills, so I very quickly lost about 15 pounds of water weight that I was carrying around.
In addition, I was put on two types of blood pressure medication and I was prescribed an antidepressant in case my Prednisone side effects became too much to handle. I was taking 5 different medications on a daily basis (include Synthroid to control an underactive thyroid) when I had previously only taken things like Aleve or Tylenol on occasion.
Instead of relying on the anti-depressant to control feelings of anxiety I started exploring mindfulness on a deeper level. I continued to practice Yoga as I had been for so many years. After my miscarriages and struggles to conceive, my focus shifted from needing to master the physical poses, to finding joy, ease and peace, both in my body and mind while practicing. With Yoga, meditation and breathwork (pranayama), I began to find more periods of time to be still, tap into my breath, and to be present. This continued to be helpful as I faced bumps in the road over the next several months of treatment. And with specific pranayama techniques, like this one that aims to tap into and heal the immune system, I began to cultivate a more holistic way of treating this “incurable disease.”
I also did a complete 180 with my diet. I stopped eating salt all together, as I could instantaneously see and feel my body retaining fluid upon consumption of salt. And, I quickly learned that eliminating salt makes it almost impossible to eat out! So I started cooking almost ALL of my meals at home. I also got rid of all of my plastic food containers, cups AND my microwave. Zapping food with microwaves to "cook" it just seems like it can't be healthy. Besides, growing up my mom always told us to stand away from it when it was on!
But I didn't stop there. I recalled reading a New York Times article a year earlier. Seeking information on what I was in for, I searched for it. The article was fascinating, but what I honed in on was this: "(he) had been given a diagnosis of kidney disease 25 years ago. With the help of a nutritionist, he had managed to avoid dialysis until the very last day before his transplant, when his doctor said the procedure was needed to clear his body of excess fluid." Determined to find out who this nutritionist was, the journalist connected me with the patient’s wife, who ultimately connected me with Feline Kondula Butcher of Nutrikon, with whom I have been working with for almost four years now.
Feline's approach was drastic, but so was the news that I had some crazy, rare, incurable disease. She put me on a strict Inflammation Free "Diet." The idea being that inflammation is the cause of all disease, and so if you can rid the body of inflammation, you can rid the body of disease. I dove in head first, removing what seemed like everything at the time: wheat, gluten, corn, dairy, sugar, soy, peanuts, meat. But I was determined! I was determined not to become one of the people mentioned in that article who received a kidney transplant. I wanted to be the person who received the diagnosis but never needs the transplant. After all, I had just done IVF and had 3 healthy embryos that were just waiting for me to be their mom, plus, by this point my friend Stephanie had already offered to be our gestational surrogate and we were planning for an upcoming embryo transfer!
The work with Feline extended beyond nutritional habits. I have worked with her on ridding my body of heavy metals, completing about 15 heavy metal detoxes over the course of two years. I also take immune-boosting and inflammation reducing vitamins to help protect my body since I am on medication that lowers my immune system.
Cardiovascular health is greatly affected by Kidney Disease and when I was diagnosed, my blood pressure was high and my cholesterol was approaching a dangerous level. So, I joined New York Road Runners (NYRR), a local running organization, and started running more consistently for the cardiovascular benefits. I also noticed the runner's high I got and it has become one of my favorite things to do alone. It’s a creative time for me. I often listen to music and let my mind wander…envisioning any and all dreams that I have coming true.
There are a lot of unknowns with CKD. I have had a couple of relapses, but I am happy to say that it has been over a year since my last relapse. I am down to two medications out of the six that I was originally prescribed. However, because the “cause” of the disease is unknown, I am committed to living a healthy a lifestyle. I feel the most in control of the disease when I am doing all that I can to be as healthy as possible. It has taken time to get here, and staying committed to this way of living is most important as this is a long process, but I am seeing positive results.
On Sunday, I ran the NYRR Healthy Kidney Run in Central Park. It is my third consecutive year running a race for a cause that I am very passionate about. I am happy and proud to say that each year my time has improved, as I have continued to stay focused on being strong and curing myself-even if they say there is no cure. I have also used these runs as a way to raise awareness and finances for the Nephrology department at Columbia University. (To date I have raised almost $25,000 for my doctor’s patient fund!)
The 2017 race was a personal record for me! And it came on the heels of some other exciting news. My nephrologist is slowly beginning to lower my dose of immunosuppressant meds! This is an enormous accomplishment and one that I want to scream from the rooftops! Perhaps by this time next year, the dosage of medication that I take each day with be cut in half and maybe I will actually get the go-ahead to try to get pregnant. Seeing that moment come to pass would be a dream come true but certainly not necessary.
I have learned that in life, everything truly does happen for a reason and in divine order. As crushing as they were to endure, I believe that my miscarriages saved me from further heartbreak. There is no way to know if I would have been strong enough to continue to nurture a baby in my womb for nine months. I will never have the opportunity to meet those babies, and for that I still grieve, but I truly believe that God was protecting me from further suffering. And when I heard the words “you cannot get pregnant,” it was deafening, it felt like my life was ending. But in truth, that was likely the exact moment that saved my life. And so for that moment, I am forever grateful.