Putting a Face on Kidney Disease
Kidney disease is a serious complication that affects roughly one in three people with diabetes in their lifetime. Two patient advocates share their stories – things they wish they knew, advice for others, and ways to stay healthy and hopeful.
A chronic kidney disease diagnosis
Jane DeMeis used to work long hours as the director of education for a home healthcare agency, and in more recent years, she has developed some serious health concerns. Now retired and in her 60s, DeMeis lives in Fairport, New York, and is even busier than before; she was the chair of the board of a local ambulance company, and she currently volunteers for a number of causes, including her local historical society and food bank (which she is a board member for).
For years, DeMeis was very active and played tennis regularly, until she started experiencing severe pain in her joints around 2006. She was prescribed a large dose of ibuprofen daily until 2009 when her healthcare team diagnosed her with psoriatic arthritis. She was then prescribed several medications to treat the arthritis (including prednisone, methotrexate, and ibuprofen), and perhaps due to these medications, the arthritis itself, or for some other reason, her kidney function rapidly declined.
Also in 2009, she was diagnosed with stage 3b kidney disease (to learn more about the different stages of kidney disease, click here), and a few years later, in 2016, she was diagnosed with type 2 diabetes. Even though she wasn’t diagnosed with diabetes until 2016, her A1C was elevated above normal levels as early as 2009, but she didn’t receive any treatment for her high glucose levels until several years later. Without proper guidance from her previous healthcare teams, her conditions worsened.
“In 2017, I had had enough,” said DeMeis. “Things weren’t improving, I wasn’t losing weight, I wasn’t feeling great, my kidney function had gotten to stage 4; so, I had to do something.” In 2018, she went back to her nephrologist who outlined her problems, recommended a renal dietician, and together they set a clear course of action to implement significant changes.
Ralph Mickle, a salesman in Spring Hill, Tennessee, just outside of Nashville, and ambassador for the American Kidney Fund had a similar experience.
“To be honest, I never thought my diabetes management, or lack of it, would damage my kidneys,” he said. After having diabetes for nine years (he was diagnosed in 2000), he was diagnosed with end stage kidney disease in 2009, with an eGFR value in the teens.
Shortly thereafter, Mickle started on dialysis. His healthcare team suggested that a kidney transplant would be his best option. However, this meant he would need to be placed on the waitlist for a donor kidney and finding a match could take years. Until then, they suggested he lose weight and optimize his health in order to reduce the risk of complications that could be associated with his future transplant.
“After that came a hard three years of dialysis and the transplant process preparation,” said Mickle, now in his 50s. “On Dec. 3, 2014, I received a second chance of life, with my kidney from a cadaver donor.”
Understanding chronic kidney disease
Chronic kidney disease (CKD) is a major complication that affects around 37 million people in the US. According to the National Kidney Foundation (NKF), diabetes is the leading cause of CKD, and about one third of people with diabetes will develop CKD (including 50% of people with type 1 diabetes) in their lifetime.
To keep your kidneys healthy, it’s important to keep track of the “ABC’s of diabetes.” This includes your A1C, Blood pressure, and Cholesterol. Knowing your numbers and keeping them within a healthy range is critical for both diabetes management and preserving the health of your kidneys.
In addition, make sure you are getting screened for your “urine albumin to creatinine ratio” (UACR) and your “estimated glomerular filtration rate” (eGFR). These two indicators measure kidney function and damage, and the combination of the two numbers provides an accurate assessment of your overall kidney health. If you have type 2 diabetes, you should get both of these tests annually. If you have type 1, you should be getting both of these tests annually after you have had diabetes for five years.
“Early detection is the key because if you can catch kidney disease in stage 2, the chances of not even progressing or having a decline is [high],” said DeMeis. This is dependent on having an early diagnosis along with a treatment plan to address the ABCs of diabetes with medications and lifestyle changes. This will help you further stabilize or even improve your kidney function. According to DeMeis, to make sure this happens, you should ask that your healthcare team conducts these kidney tests annually (if they are not already doing so).
Treatment options for chronic kidney disease
Though there is no cure for CKD, there are things you can do to prevent it, or slow its progression if you already have it.
“When I was told that sooner or later I would have to start dialysis, I started researching possible cures for kidney disease,” said Mickle. “I was told there is no cure, but there are options to live a better life.”
Lifestyle changes are often the first course of action and can dramatically slow the progression of CKD. In addition to monitoring A1C, blood pressure, and cholesterol levels, your healthcare team may encourage you to adjust your diet to reduce salt intake, limit processed foods or protein, increase your physical activity, and quit smoking.
“I went and saw a renal dietitian, lost 38 pounds in about eight months, and my blood sugar was better,” said DeMeis. When COVID hit, she hit a few roadblocks – it became harder to access the healthy foods she was eating and stay on top of her diabetes management. Her CKD slipped into stage 5.
“In February , I started a plant-based diet,” she said. “I have lost 50 pounds now, my [A1C] is down to between 5.9 and 6.0%... and I feel absolutely fantastic.”
Beyond lifestyle changes, medication options include blood pressure medicines such as ACE inhibitors or angiotensin receptor blockers (ARBs). For people with type 2 diabetes, SGLT-2 inhibitors can not only improve glucose levels but they can also lower your risk for eGFR decline and end-stage kidney disease. Another type of medication, called a non-steroidal mineralocorticoid receptor antagonist (MRA), can also help reduce the risk of kidney failure and worsening of kidney disease as well as the risk of cardiovascular death, heart attack, and hospitalization for heart failure.
The progression of CKD depends on the stage of kidney disease you are in when you are diagnosed. The kidney disease stage will also determine what treatments are available to you. If progression cannot be slowed, you may end up in end-stage kidney failure. This is when you have lost about 85% to 90% of your kidney function, and your eGFR is less than 15 mL/min.
When this occurs, almost all people require either dialysis or a kidney transplant.
Dialysis does the work of your kidneys by removing waste, salt, and excess water, preventing buildup of certain chemicals in your blood, and helping control your blood pressure. Dialysis can be done in a hospital, a special dialysis unit, or at home, and once dialysis is started most people will remain on dialysis unless they receive a kidney transplant.
There are two types of dialysis. Hemodialysis is when an artificial kidney (called a hemodialyzer) removes the waste and extra chemicals or fluid from your blood through a small opening that connects to blood vessels (this requires a minor surgery in your arm or leg). Hemodialysis treatments usually last about four hours and are done around three times a week. Peritoneal dialysis is when your blood is cleaned inside your body. A plastic tube called a catheter is placed in your stomach area by a minor surgical procedure. During treatments, a sterile cleaning fluid called a dialysate is put into your belly through the catheter and then after the filtering process is done, the fluid is removed from your body through the catheter.
Because Mickle was diagnosed with end-stage kidney disease, he ended up on dialysis. During this time, his healthcare team helped him undergo the evaluation required to see if he could qualify for a kidney transplant. He was then placed on the transplant waitlist, continuing to go through dialysis until a donor match was found.
“To be honest, it was hard,” he said. “Luckily, I was able to get [dialysis] as late as possible in the day because afterward, I was not able to do anything. It knocked me out.” The day after his treatments, Mickle described having a lot more energy and feeling better. He continued on dialysis for three years before finally getting a call from his transplant team.
If you are in end-stage kidney failure, a kidney transplant (which is a major surgical procedure) can restore your kidney function. In a transplant, a donor kidney (either from a related or unrelated living donor, or from a deceased donor) is placed in the pelvic area of your body to compensate for your own kidneys. This procedure will require you to take a broad spectrum of immunosuppressant drugs for the rest of your life to prevent your body from rejecting the transplanted donor kidney.
Mickle said he did his best to stay positive and healthy, keeping up with his dialysis treatments. When the call came for his transplant, he was in good shape for the surgery.
“My life today is a thousand times healthier and stronger,” he said. “I am able to do [almost] anything I want because I am under good control and good doctor supervision.”
A message for others
For DeMeis, diet and lifestyle changes had a monumental impact. “In 2018 when I saw my nephrologist, she said, ‘Jane, you will be on dialysis in six months, be prepared,’” she said. It is now almost four years later, and DeMeis has yet to require dialysis.
Now, DeMeis devotes her time to helping others navigate their own CKD, working as a peer mentor with the National Kidney Foundation and ambassador for the Know Diabetes by Heart initiative.
“I actually started as being mentored when I needed to get some reassurance after my diagnosis; it was one of the resources recommended to me,” she said. “Once I got done with that, I said I want to turn this around and give back, so I went through their training and I have been doing that now for almost four years. I have met a lot of wonderful people.”
After receiving his transplant, Mickle’s life was radically transformed for the better.
“I believe I have the obligation to share my story with others,” he said. “Diabetes, if detected early, can be treated, and it’s possible to avoid any long term complications [like kidney disease]. There are a lot of options out there; you just need to be aware of them and talk to your healthcare team.”
Want to learn more about what you can do to keep your kidneys healthy? Join us on December 14 at 5:30 pm EST / 2:30 pm PST for diaTribe Musings – Uncomplicating Diabetes: What To Know About Your Kidneys. Register here.