At what stage of cystic kidney disease is dialysis recommended?

Question

Hello doctor,

I have been diagnosed with cystic kidney disease, and it has been causing me unbearable back pain for several weeks. My kidney function test shows 38% and is dropping rapidly. I am unable to sleep lying down anymore due to the intense pressure and discomfort. My blood pressure remains at 178/102 despite taking three different medications. At times, my urine appears cola-colored, and there is a burning sensation while passing urine. My nephrologist has started discussing the possibility of dialysis soon, which terrifies me.

How much time do I realistically have left with my kidney function?

Medications I am currently on include:

Amlodipine.
Lisinopril.
Hydrochlorothiazide.

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I have read your query and can understand your concern.

1) What is happening:

Your cystic kidney disease is likely progressing rapidly.

A kidney function of 38% and dropping indicates moderate to severe kidney damage.

Back pain, cola-colored urine, high blood pressure, and burning during urination are signs that your kidneys are under significant stress.

2) What does it mean:

At 38%, your kidneys are still functioning, but the decline and symptoms suggest that kidney failure could be approaching.

If the pain, elevated blood pressure, and urinary issues persist, you may reach the stage requiring dialysis within months or possibly sooner.

3) How much time do you have left before dialysis?

There is no exact timeline, but:

If your kidney function continues to deteriorate at the current rate, dialysis might be required within a few weeks to a few months.

However, if managed properly with medication, diet, and timely treatment of infections or cyst-related bleeding, it may be possible to slow down the decline.

I suggest you do the following:

Urgent blood pressure control: High blood pressure that high can accelerate kidney damage significantly. Discuss optimizing your current antihypertensive medications with your nephrologist.

Pain and urine tests: Request investigations to check for urinary tract infections or cyst bleeding—both of which are treatable and could be contributing to your symptoms.

Cyst management: Ask your doctor whether temporary drainage or surgical intervention is appropriate if the cysts are causing severe pain or pressure.

Prepare for dialysis: Begin preparing emotionally and medically for the possibility of dialysis. Remember, dialysis is not a failure; it is a life-saving therapy that can relieve many of the symptoms you are currently facing.

I hope this helps.

Thank you.