I have been active my entire life and I am a person of size. I did a lot of things, including playing tennis, swimming, hiking, and riding my bike.
Being large, I was constantly being tested for diabetes, but my A1C would come back normal. Diabetes is not a part of my family.
When I was diagnosed with psoriatic arthritis, I was faced with a regimen of medications that impacted my kidneys, which led to a diagnosis of chronic kidney disease and type 2 diabetes.
I was told to lose weight. Working with a renal dietitian helped me improve my health.
I learned as much as I could about chronic kidney disease so that I could advocate for myself. This is my story.
I started to have a lot of pain in 2006 at the age of 52. I was told that the pain would go away if I lost weight. Doctors did not conduct any tests. I was prescribed 1800 IU of Ibuprofen for 2 and a half years to deal with the pain.
I went back to the doctor and said that my hands were not weight-bearing. Something is not right.
I was diagnosed with PsA in 2009. PsA affects the whole body. I had a skin condition called Psoriasis.
I was put on weekly methotrexate shots and I was also put on prednisone after I was diagnosed. I was told to keep taking the medicine.
I was passing blood in my urine. They discovered my kidneys had crashed when I went to have labs drawn. My A1C was 13 years old.
My A1C was checked out several times, and although it came down once I was off the drugs, it was never normal again. My GFR was never above 41.
I visited a doctor and he told me to lose weight. There was no discussion of the diet.
I was put on Enbrel, which helped the PsA, but my disease progressed and so did my diabetes.
I have taken a number of different medications for the PsA. My GFR continued to decline. The PsA caused my uric acid levels to be very high. I developed large stones which damaged my kidneys.
Even though I was put on the drug, my A1C went up to 9.2. I gained a lot of weight.
I retired in the year 2018, so I could focus on my health. I was told to prepare for the procedure in 6 months. I was not giving up on the decline.
I took classes and read and became educated. I saw a person who works with the elderly. She said I was not eating right and that my metabolism had probably been ruined by the years of dieting. She taught me how to eat well.
The challenge was eating a diet for both diabetes and a body that is not perfect. The diet that allowed pasta and white rice was not good for diabetes.
“I had to be aware of the sugar. I had to be careful with both of them. I didn’t eat any processed meats. I was still eating some of the things I used to eat.”
I was eating egg whites a lot. I built a list of foods that were good for both people with diabetes.
I was able to have a good variety of foods to work with by using different combinations and seasonings.
I kept a food tracker and recorded everything I ate. My diabetes was getting better even though I still ate carbs. I made my own food. I lost 40 pounds.
My diet was heavy with vegetables. I had to learn which ones were good.
I had been diagnosed with high potassium and had to be careful with it. I knew that potatoes, tomatoes, squash, and other greens were not good, but that lentils, beans, and zucchini were high in the essential mineral.
I learned which foods could affect the levels of phosphorous. I had to be careful with the fiber I added with the diabetes because of the high levels of carbs and phosphorous.
I became knowledgeable on good foods and recipes for chronic bronchitis and diabetes after reading many reviews of my tracked diet.
I gained some weight after COVID hit, and my kidneys were not improving. It was difficult to get fresh vegetables.
I went back to the doctor in early 2021. I was at a GFR of 13 She said I should go plant-based.
Simple switches made it easy to use. I switched to almond milk and creamer. I stopped eating eggs and fish.
I tried to use as many natural, unprocessed foods as possible. I still had to watch my blood pressure.
“I have lost 50 pounds since I started. We grow our own vegetables and herbs. We shop for natural wholesome foods at farmer’s markets.”
We made our diet a hobby and now shopping is fun. We enjoyed the fruits and berries we froze all winter. We still go out to eat, but to restaurants that will prepare food that I can enjoy.
My diet has narrowed a lot, but that is ok. I am limiting the amount of oils and salad dressings I use.
I add fiber to my diet with oatmeal and flaxseeds. The diet I eat is approved by the two people who care about me.
I hope that other people with chronic illnesses will be able to benefit from working with a renal dietitian.
I work with the National Kidney Foundation to expand access to Medical Nutrition Therapy, which is structured counseling from a registered dietitian, so that other people can learn to manage their chronic illnesses through better nutrition.
I participate in clinical trials and pharmaceutical investigations to learn more about my health and nutrition. I work with my doctor.
I work out in the pool for an hour each day and I also have to get in 5,000 steps a day.
Ozempic is a GLP1 that is good for the health of the body and is supposed to help with weight loss.
My journey has been very difficult and wonderful at times.
I had to advocate for myself when dealing with doctors and build up a good care team. I had to become more educated about my diet.
I had to change my lifestyle. I had to educate my family on my needs.
I became involved in many ways in the world of kidneys and became an advocate for myself and others.
I feel great because of it. My energy is back. I have kept the weight off of me.
The best results were my current labs. My cholesterol went from 200 to 130. My triglycerides dropped to the lowest point in my life. My GFR went up five points and my creatinine went down.
I have cut down on the amount of shots I give at night. My A1C is below average.
My doctors have been amazed by my success. I have regained control of my life, instead of being controlled by 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.