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Dear Doctor: Woman With Stage 4 Kidney Disease Seeks Options To A Transplant

DEAR DR. ROACH: I am a 62-year-old female who has focal segmental glomerulosclerosis (FSGS) that was diagnosed in 2001. After several years of treatment with prednisone and cyclosporine, along with an ACE inhibitor, I was in "remission" and listed as stage 3. At the time, the life expectancy of someone with FSGS was 10-20 years, which I have clearly passed. I am now in stage 4 with a glomerular filtration rate (GFR) of 23.

I am trying to get a better understanding of my future. I do not want a transplant, although many of my friends have offered up a kidney. What about dialysis, and why does everyone fear that more than a replacement? If I only have dialysis, what is my life expectancy?

I am sleeping 10-12 hours a day and am still always exhausted. Sometimes I cannot muster the energy to keep my arms up to wash my hair. My potassium and phosphorus levels are high. Do you have any advice? -- R.G.

ANSWER: A GFR is a way to express overall kidney function. A healthy young adult has a GFR of 90-120. As the GFR goes down with any kind of chronic kidney disease (or just with aging), people are placed into stages based on their GFR. Kidney disease without a low GFR is considered stage 1; stage 2 is mild, ranging from 60-89; stage 3a and 3b range from 30-59; stage 4 ranges from 15-29; and stage 5 is end-stage renal failure with a GFR below 15.

It is very likely you will continue to lose kidney function, so planning for kidney replacement therapy now is important. The fact that your phosphate and potassium levels are high suggests that you will need to do something soon, even if your GFR isn't at stage 5 yet.

A transplant is considered to be the optimum treatment because it affords both the best long-term survival rate and the best quality of life (and also the lowest cost). Unfortunately, there aren't enough organs available, so there is typically a wait for an organ (except when there is a matched living donor available).

There are two types of dialysis. Although most people think of center-based hemodialysis as the primary treatment for end-stage renal disease, nearly every kidney specialist I asked said that they would rather use home dialysis. This is mainly because there's much less "downtime," but also because most studies have shown improved results.

Doing hemodialysis in a center is time-consuming, typically ranging from four hours three times per week, plus the transportation time. Peritoneal dialysis, which can be done during the day or by an automated machine at night, needs to be done every day, but takes much less time out of your day.

One option that many people don't know about is nocturnal hemodialysis, which can be done at home or in a special nocturnal center. It has significant benefits over center-based hemodialysis. Some studies have shown better survival and an improved quality of life. Most studies have shown improved heart function, better removal of toxins, better sleep, and more dietary options compared to conventional hemodialysis.

Since you asked about a prognosis, I will tell you that despite significant improvements, being on dialysis increases your chances of dying by about 6% each year. Peritoneal dialysis and home-based hemodialysis have improved mortality rates compared to the typical center-based hemodialysis, but a transplant has the lowest risk of all, as well as the best quality of life.

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Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.Cornell.Edu or send mail to 628 Virginia Dr., Orlando, FL 32803.

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Comorbid Diabetes Increases Risk For Lower Extremity Amputation With Kidney Disease

FRIDAY, Oct. 18, 2024 (HealthDay News) -- Patients with comorbid diabetes have an elevated risk for lower extremity amputation (LEA) at all stages of chronic kidney disease (CKD) compared with patients without diabetes, according to a study published online in the November issue of Journal of Diabetes and Its Complications.

Dhruv Nandakumar, from University of Texas Southwestern Medical School in Dallas, and colleagues evaluated the impact of diabetes on LEA rates in patients at various stages of CKD. The analysis included roughly 1.06 million patients with CKD and diabetes and 547,414 patients with CKD but no diabetes from 2010 to 2023.

The researchers found that rates of all LEA (overall, minor, and major LEA) were significantly higher at all CKD stages for patients with diabetes. For patients with diabetes and CKD stage 5, there was an increased likelihood of undergoing overall LEA (odds ratio [OR], 30.2), minor LEA (OR, 28.9), and major LEA (OR, 40.1) compared with patients without diabetes who had CKD stage 5. Independent of diabetes status, minor LEAs were performed with greater frequency than major LEAs across all stages of CKD. LEA rates significantly increased with CKD progression between stages 2 and 5 with comorbid diabetes, with a substantial jump between stages 4 and 5 (OR, 2.6). There were no significant increases in LEA rates with CKD progression between stages 1 and 2 in patients with diabetes.

"Foot and ankle surgeons who treat diabetes-related foot conditions should recognize the clinical consequences of worsening renal function," the authors write.

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5 States With Highest Rates Of Chronic Kidney Disease

The rate ranged from just a little over 2%, in New York state, up to more than 5%, in the three states.

For data on all 50 states and two other state-like jurisdictions, Puerto Rico and the District of Columbia, see the table below.

Methods: The CDC breaks down data on kidney disease for people under 18, people ages 65 and older, and four age groups from 18 through 64.

One benefit of using that approach is that it filters out the effects of the aging of the population, or other population trends, in a given state.

The impact: Kidney disease can lead to use of dialysis services, poor quality of life, early death and organ transplants.

Workers who need dialysis or kidney transplants may qualify for Medicare coverage after about three years, but an employer can expect to pay about $300,000 in claims per year for an employee or former employee on dialysis who is waiting to Medicare to open up, according to Healthgram, a self-funded plan designer.

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