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.
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 centre-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 centre 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 centre. It has significant benefits over centre-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 centre-based hemodialysis, but a transplant has the lowest risk of all, as well as the best quality of life.
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 [email protected]
