Medical terms are important to know as they help an aHUS patient understand his or her condition and treatment plan, so be sure to ask when an unknown term crops up in conversation or on medical history reports. Often these terms can help you understand whether the situation is improving, worsening, or remaining stable, and understanding these terms as they relate to the patient’s blood work is essential to assessing the risk of kidney failure.

The Renal Diet: The renal or kidney diet helps patients reduce the amount of waste products produced, which lessens the workload of the kidneys. It is important to note that there is NO single “kidney diet” you can utilize from an online resource, as diets are tailored to each patient’s kidney function and overall health. Most kidney-friendly diets limit potassium, phosphorus, and sodium intake to varying degrees, but the patient’s doctor will often arrange a consultation with a nutritionist or dietician to ensure a personalized dietary plan is put in place that works in conjunction with the aHUS patient’s treatments and medications. 

Chronic kidney disease (CKD): Chronic kidney disease is a progressive loss of kidney function over months or years and is often noted in 5 stages, ranging from slightly diminished function (Stage 1) to severely impaired function (Stage 5). Chronic kidney disease is diagnosed using blood tests such as serum creatinine and blood urea nitrogen (BUN), as well as other measures of kidney function such as the creatinine clearance rate and the estimated glomerular filtration rate (eGFR). 

End-stage renal disease (ESRD; also known as Stage 5 CKD): Progression to ESRD means that the kidneys can no longer effectively clear waste products and water from the body. At this stage, key discussion points for the patient, family, and healthcare providers will include options for renal replacement therapy, including maintenance dialysis or renal transplantation. 

Uremia: As kidney function deteriorates and the body is less able to clear water and waste products, toxins can build up in the body causing uremia. Symptoms may include weakness, fatigue, nausea, vomiting, itching of the skin, muscle cramps, joint aches and pains, blurred vision, and sleep problems. 

Dialysis: When a patient is in ESRD, discussions about dialysis should occur in the event of progression to the last stage, commonly called “kidney failure” or renal failure. When kidney function fails, they can no longer perform their primary, life-sustaining function of removing water and waste from the body. Diet, treatment center availability, family circumstances, and lifestyle are among the primary considerations when dialysis becomes necessary to artificially do the kidneys’ job. 

Hemodialysis (blood stream access; aka, “hemo”) and peritoneal dialysis (solution exchange in the abdomen; aka, “PD”): Both hemodialysis and peritoneal dialysis require access points that are made surgically. Both methods have their positive points, and dialysis choices will vary according to the aHUS patient’s situation and lifestyle choices.