Track your signs, symptoms, and lab results

With PNH, your signs and symptoms only tell part of the story. They can’t always tell you what’s going on inside your body.

Your signs and symptoms — combined with lab results — give you and your doctor the full story of your PNH.

Know your signs and symptoms

When you track your signs and symptoms over time, you and your doctor can be more aware of changes in your health. So take note of how you’re feeling and share it with your doctor. And remember, always contact your doctor if you have any sudden changes to your health. Find helpful tools to take control and help track PNH.

Download a Lab Tracker and a PNH Symptom Checkup Chart. They’ll help you and your doctor watch your signs and symptoms and your lab test results, so you can get more out of each doctor visit.

Know your numbers

There are a number of important lab tests that can help tell you and your doctor how your PNH is progressing.

• Lactate dehydrogenase (LDH):
  Frequent testing of your LDH is an important part of PNH management. This will give you and your doctor an idea of how much hemolysis is going on in your body. By tracking LDH levels over time, you and your doctor can check your progress. Also, your LDH levels can tell your doctor if you might be at risk for serious health problems

Along with LDH and other tests, your doctor may also check:

• Red blood cells (RBCs):
  These deliver oxygen and remove waste from your body. Tests will check the amount in your blood
• White blood cells (WBCs):
  These protect the body from infection. Tests will check the amount in your blood
• Hemoglobin (Hgb):
  This is a part of your red blood cells that carries oxygen throughout your body. Low levels of hemoglobin can cause anemia, which can make you feel weak and tired. Tests will check the amount in your blood

Know the full story

At times, you may be feeling better, but your lab results won’t show improvement. The reverse of this can also happen.

No one sign, symptom, or lab result defines PNH. This is why it’s important to keep a close watch on all three. It’s the best way for you and your doctor to understand the full story of what’s going on with your PNH.

Speaking with your doctor about your lab results

To understand your lab results, you don’t need to learn another language. Remember, your doctor is there to help you. So don’t be afraid to ask questions!

Here are a few to help you get started:

“What does this lab test mean?”

“Are my results normal?”

“What does it mean if my results are above/below normal?”

“Is there anything I can do to get them within a normal range?”

Speaking openly can help you and your doctor better manage your PNH.

When you deal with PNH every day, you can start to get used to feeling its symptoms. They may even start to feel “normal.”

That’s why it’s important to track your signs and symptoms, so you can tell if they’re getting worse over time.

Speak with your doctor about ways to manage PNH— you shouldn’t have to feel like being sick is normal.

Next: How can I find help?

*Fictitious patient and account. Adapted from real patient stories.