Living with Diabetes and Kidney Disease: A Patient’s Story
May 30, 2017
Contributed by the
This is a story of someone with diabetes and kidney disease. You will find out how one person learned to live well with these diseases and what treatments are needed. It is also about how they learned that having a support system was key to their success.
Unfortunately, it is a story that happens all too often. Diabetes and kidney disease are very common, and many people have both. In fact, diabetes is the leading cause of kidney failure, which means your kidneys are no longer able to work and you need dialysis or a kidney transplant to live.
The person telling this story prefers to remain anonymous, but they still want to share their experience with others.
Learning about Diabetes and Kidney Disease
“At age 16, I went to the doctor before starting a summer job. I told them I was always thirsty, and have been drinking and peeing a lot. They performed a blood sugar test. My blood sugar was 900 (normal is around 120), and I was diagnosed with diabetes.”
“Along the way, I learned that if I don’t take my insulin, I can become really thin. This was popular among younger people at the time, and my doctors had talked to me about this. They told me that if I don’t control my diabetes, it could lead to kidney failure.”
Living with Diabetes and Kidney Disease
“I always thought it would happen much, much later in life and maybe not to me at all. I later learned that what I had was called “diabetic anorexia,” and this is a real thing that can mess you up. The diabetic anorexia - along with not taking good care of myself - likely caused my kidney function to decrease. In college, I began seeing a therapist and learning what I needed to do to stay with my treatment plan, and better control and manage my health.”
“Fortunately, I had really great doctors from the beginning who told me about possible complications from diabetes, including kidney disease. But I always thought it would be many, many years down the road. My doctor sent me to a nephrologist about 10 years before I was diagnosed with kidney disease, and they kept record of my kidney function. Initially I would see my nephrologist once a year, then as the years went on, I would meet with them 2 or more times a year.”
“I was told by my doctor about the different types of dialysis, which is a treatment that filters my blood, since my kidneys were no longer able to do this. I had decided that when it was time, I would start with a type of treatment called peritoneal dialysis (a type of dialysis that can be done at home). This was the best option for me, as I had a job and needed to keep working. Two years ago, I started peritoneal dialysis.”
“The thing is that peritoneal dialysis uses “PD solution,” which is a solution that contains sugar. I had to meet with a diabetes educator to learn how to manage my insulin while on peritoneal dialysis. This was extremely challenging. I had 2 different types of solution – 1 was stronger than the other, with more sugar, and there was some trial and error in managing it. Peritoneal dialysis was not so difficult (I never tried hemodialysis, another type of dialysis done in a healthcare setting). I found it easy to manage and had the freedom I needed, but it did impact my social life (I needed to be home by 10:00 pm for treatment).”
“In February of this year, I received the call for a kidney-pancreas transplant. I am still recovering from the procedure.”
Having a Support System
“I had a support system, but I didn’t really use it. When I was younger, I pretended as if I didn’t have diabetes and wasn’t very open with others about it or asking for help. When I eventually had better control over my diabetes, I started to rely on my support system of friends. They all understood I was diabetic and learned to look out for signs of my lows” My roommate was particularly knowledgeable and helped me through tough times. I became “diabetic unaware,” meaning that I had so many low blood sugar moments, that I was unable to feel when I was becoming low and risk passing out at any time. Feeling the lows coming on can be relearned, but only after someone has their blood sugar under tight control. I never felt high enough to relearn my lows.
“I work at a very friendly company, and from the beginning, I informed them I was diabetic and on dialysis and explained to them my treatments and what happens when my blood sugar is too low (called a “low”). My colleagues knew what to do, and I had everything on-hand that I would need in case I experienced a low while at work. While the comfort level at work varies per person, and not everyone would feel comfortable sharing, I recommend being close with at least one person so you can alert them and they can help you if needed.”
Advice for Others
“My advice for others? Diabetes is so tough to control, and it’s so important to take your meds. Take your insulin. Keep your numbers in check. Follow the kidney diet. Do your dialysis. These things will help you in the long-run to get a kidney and pancreas (if/when needed) that is healthy for you.”
“Also, I was never told about the “kidney diet” and learned about it only after starting on dialysis. I wish I had learned about it sooner to help slow down the progression of kidney disease. I advise others diagnosed with kidney disease to start on the kidney diet early on. There are a lot of restrictions on what a person can’t eat – beans, nuts, tomatoes, avocado, dairy – and limits on fluid intake, but following it really does help keep kidney function in check.”