The aHUS Tracker

If you have atypical hemolytic uremic syndrome (aHUS), you need to have regular blood tests to check the health of your kidneys and your platelet and red blood cell counts. It is important to track your results over time. Here’s some information about how to do that, and what such a record might entail.

What is aHUS?

One of about 7,000 known rare diseases, aHUS is characterized by the formation of blood clots in the small blood vessels of the kidneys. This clotting can damage these organs, leading to multiple health problems.

Blood tests in aHUS

Your treatment options often depend on more than your symptoms and ability to tolerate a particular therapy; trends seen in the results of blood tests can also weigh on treatment choices.

Common laboratory tests ordered for aHUS patients include a complete blood count (CBC) that gauges multiple aspects of blood, such as the number of red blood cells, white blood cells, and platelets. The test also checks levels of hemoglobin and hematocrit.

Blood tests may also contain information about levels of proteins and other components dissolved in the blood, such as haptoglobins, albumin, creatinine, and blood urea nitrogen. They may also check for lactate dehydrogenase, a chemical marker of aHUS disease activity.

Why is tracking aHUS important?

The complexity, severity, and variability of aHUS can make patient monitoring difficult. In addition, a person’s symptoms may change over time. Frequent laboratory tests can often detect aHUS disease activity before symptoms are manifest, and indicate a need for treatment to protect kidney function.

It is important for you to know whether a specific laboratory test result is trending up or down, or has stabilized. Keeping a log or diary of laboratory values is helpful to many aHUS patients and their families.

aHUS tracker

The aHUS Foundation offers a chart to help you keep abreast of your laboratory tests and results. Using what is called an aHUS tracker, you can log the dates and values of your CBC, panels, chemistry studies, and other laboratory tests.

In addition, the tracker includes a space for you to document your medications and their doses, allergies you may have, associated treatments such as dialysis, and any events or chronic medical problems.

It also includes places to note your specific diagnosis, the names of your primary physician and specialists, emergency contact information, and the details of your hospital or clinic. There’s also a space for test or treatment notes, and patient information such as height, weight, and blood pressure.

Finally, the chart has a list of resources that you can use to learn more about aHUS.

Last updated: Sept. 14, 2020

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aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.