All my life, I have been a person of size who was extremely active. I played tennis, swam, hiked, and rode my bike for miles.
Being large, I was constantly being tested for diabetes, but my A1C would come back normal. Diabetes does not run in my family.
But when a diagnosis of psoriatic arthritis led to a regimen of medications which impacted my kidneys, I found myself facing a diagnosis of chronic kidney disease and type 2 diabetes.
Through it all, I was told that I needed to lose weight. But what most helped me to improve my health was working with a renal dietitian.
I also learned as much as I could about chronic kidney disease (CKD) so that I could advocate for myself and my health. This is my story.
In 2006, at the age of 52, I started having a lot of pain. I was told that the pain would go away if I lost weight. Doctors did not run any tests. For 2 and a half years, I was prescribed 1800 mg of ibuprofen to handle the pain.
When my hands began to curl into claws, I went back to the doctor and said, “Look, my hands are not weight-bearing. Something else is going on.”
Finally in 2009, I was diagnosed with severe psoriatic arthritis (PsA). PsA affects the whole body, not just the joints, with inflammation. I also had psoriasis, which is inflammation of the skin.
Once diagnosed, I was put on weekly methotrexate shots I administered to my gut and prednisone. I was told to keep taking the ibuprofen as needed.
I started to pass blood in my urine. When I went to have labs drawn, they discovered my kidneys had crashed. My A1C was 13.
Several labs and tests were done, and although my A1C came down once I was off the medications, it was never normal again. My glomerular filtration rate (GFR) never went above 41.
I visited a nephrologist and an endocrinologist, and again, the message was, “Lose weight.” There was no talk of renal diet or other modifications.
I was put on Enbrel (etanercept), which helped the PsA, but my kidney disease progressed and so did my diabetes.
Through the years, I went through a series of different medications for the PsA. My GFR continued to decline. My uric acid levels were extremely high due to the PsA. I developed kidney stones, some quite large, which further damaged my kidneys.
Even though I was put on insulin eventually, my A1C got all the way up to 9.2. I also had gained a lot more weight.
In 2018, I decided to retire and focus on my health. I went back to the nephrologist, who said to prepare for dialysis in 6 months. The decline had been steady, but I was not ready to give up.
I took classes and read and became as educated as I could on CKD. I saw a renal dietitian. She said I was not eating properly and that all the years of “dieting” had probably ruined my metabolism. She taught me about good nutrition and healthy eating for CKD.
Eating a renal diet and eating carefully for diabetes was a challenge because they seem to be in conflict. Things that were allowed on the renal diet like pasta and white rice were not good for diabetes.
I added fruits but also had to be mindful of the sugar. I had to be careful now of not only carbs, but protein. I didn’t eat any red meat or processed meats. I was still eating chicken, fish, and dairy, but in moderate amounts.
I was also eating egg whites very often. The limitations of a renal and diabetic diet seemed insurmountable, but I built up a list of foods that were good for both.
By using different combinations and adding different seasonings, I was able to have a good variety of foods to work with.
I kept a food tracker, and I logged everything I ate: snacks, meals, and even tastes. Even though carbs were still a part of my meals, my diabetes was getting better. I made my own bread and even my own pasta. I also lost almost 40 pounds.
My diet was heavy with vegetables. I had to learn which ones were good for CKD.
I had to be mindful of my potassium because I had been diagnosed with hyperkalemia (high potassium). I knew potatoes, tomatoes, squash, and other certain greens were not good, but that lentils, beans, and zucchini were high in potassium.
I learned which foods could impact phosphorous levels as well. With the diabetes, I had wanted to add fiber but had to be careful of the carbs and phosphorous associated with fiber like bran and oatmeal.
I had many reviews of my tracked diet with the dietitian, and I became quite knowledgeable on good foods and recipes for CKD that were also healthy for diabetes.
After COVID hit, I started to gain some weight back, and my kidney function was not improving. It was a real struggle for a while to get fresh vegetables.
I went back to the renal dietitian in early 2021. I was at a GFR of 13. She recommended I go plant-based.
Simple switches made it easy. I went from dairy to almond milk and creamer. I stopped eating eggs totally, and no chicken or fish.
I tried to use as many natural, unprocessed foods as possible. There were challenges, especially because I still had to watch my potassium.
I lost more weight and have maintained the weight loss of about 50 pounds now. My husband and I grow some of our own vegetables and fresh herbs. We go to farmer’s markets to shop for natural wholesome foods.
We made our diets into a hobby, and now shopping is much more fun instead of restricting. We froze fruits and berries we picked in the summer and enjoyed them all winter. We still go out to eat, but to restaurants that will prepare foods that I can safely enjoy.
My diet has narrowed a lot, and that’s OK. I even cut down on my beloved cheese, and I am now limiting fats such as oils and salad dressings as well.
I eat lot of fruit and add fiber to my diet with oatmeal and flaxseeds. I eat a very low protein diet, which was approved by the renal dietitian and my nephrologist.
My hope is that other people with CKD will be able to benefit from working with a renal dietitian and have success managing their chronic illnesses, as I did.
I work with the National Kidney Foundation (NKF) to expand access to Medical Nutrition Therapy (MNT), which is structured counseling from a registered dietitian so that other people can learn to manage their chronic illnesses through better nutrition.
I continue to educate myself on kidney health and nutrition with research and by participating in clinical trials and pharmaceutical investigations. I also continue to work with my dietitian.
This summer, I started working out in our local pool two times a week for an hour each day, and I also make sure to get in 5,000 steps a day.
This fall I began taking a GLP1 called Ozempic (semaglutide), which is good for kidney health and diabetes and is supposed to help with weight loss.
My journey has been wonderful at times and other times, very arduous.
I had to advocate for myself when dealing with doctors and build up a good care team including a renal dietitian. I had to become very educated on foods and nutrition for both my diabetes and CKD.
I had to make major changes in my lifestyle. I had to educate my family on my needs and get them on board.
I became involved in as many ways as I could in the world of kidney disease and become an active advocate for myself and others.
But it was worth it because I feel fabulous. My energy is back. I have kept the weight off.
The best results were my most current labs. My cholesterol went from over 200 to 130. My triglycerides dropped way down to the lowest it has ever been in my life. But most amazing is that my creatinine went down and my GFR went up five points.
I have cut down to only one long lasting insulin shot at night and that amount has been cut way back. My A1C is down to 5.8.
All of my doctors have been amazed at my success. I have gained back control of my life, instead of being controlled by my chronic illnesses.
Jane DeMeis is a retired educator who has been living with Chronic Kidney Disease and diabetes for many years. In 2018, she took hold of her health, slowed the progression of her Stage 4 CKD, and significantly improved her A1c with diet and exercise. Jane now advocates for patient education and support and is an ambassador and educator for AAKP and the National Kidney Foundation.