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Q: How is oxygen carried through my body?
A: When you breathe in, a protein called hemoglobin (HEE-mo-glo-bin) in your red blood cells carries oxygen from your lungs to your heart, brain, muscles and other organs. When you have anemia, your red blood cells aren't working properly. This means your hemoglobin isn't able to carry oxygen from your lungs to where your body needs it.
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Q: Why aren't my blood cells working the way they should?
A: There are several diseases that can cause your red blood cells not to work properly. Blood cells are produced in your bone marrow, and people with bone marrow disease often have anemia. For instance, in people with myelodyplastic syndrome (MDS) and aplastic anemia, the bone marrow doesn't make enough red blood cells. Other blood disorders, such as thalassemia, sickle cell anemia, and Diamond Blackfan anemia are genetic.
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Q: Why do I need blood transfusions?
A: TThe blood transfusions you receive are putting healthy red blood cells into your body. This helps bring more oxygen to your organs, which helps you feel better.
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Q: Who is at risk for iron overload?
A: People who have had 10 or more blood transfusions, including those with sickle cell disease, myelodysplastic syndrome (MDS), thalassemia, other anemias requiring transfusions, or those who have had transfusions for any other reason, are at risk for iron overload. Ask your doctor to help you find out if you may be at risk.
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Q: Is it possible to have iron overload and still be anemic?
A: Yes. This is because anemia is a condition that means you have a lower than normal number of red blood cells. One possible cause of anemia is an iron deficiency, but there are also many other causes. Blood transfusions are one of the possible treatments for people with anemia. But if you continue to have transfusions to treat your anemia, you might eventually have too much iron in your body.
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Q: How many transfusions put me at risk?
A: When you have had 10 or more blood transfusions (greater than or equal to 20 units), you are at risk for iron overload.
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Q: How will I know if I have iron overload?
A: OOne way to know if you have iron overload is to have a simple blood test, known as a serum ferritin test. Ask your doctor about getting screened for iron overload.
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Q: If I had a transfusion or multiple transfusions many years ago, am I still at risk?
A: Yes. Your risk is calculated by the total number of blood transfusions you've had in your lifetime, even if you received transfusions when you were very young. This is because your body cannot eliminate excess iron. If you can't remember how many transfusions you've had but think you might be at risk, your doctor can order a simple blood test, known as a serum ferritin test, to find out if you have iron overload. Ask your doctor if the serum ferritin test is right for you.
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Q: Without a test, can I tell if I have iron overload?
A: No. The symptoms for iron overload are not obvious, which is why you must be screened to find out if you have it. Iron overload won't make you feel sick or different until it has caused serious health problems, such as heart or liver problems. That's why it's important to ask your doctor for a simple blood test called a serum ferritin test to find out if you have iron overload. Ask your doctor if the serum ferritin test is right for you.
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Q: What does iron overload feel like?
A: Until you have serious health problems, iron overload won't make you feel sick or different. That's why you should ask your doctor about getting screened for iron overload.
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Q: Can iron overload permanently damage my heart or other organs?
A: Yes. If you don't manage your iron overload, it can damage your heart, liver and other organs. Sometimes, the damage caused by iron overload can be permanent. That's why it's important to know if you have iron overload and to ask your doctor about treatment options.
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Q: What tests are available to check for iron overload?
A: Although there are several tests to check for iron overload, the most common is a simple blood test called the serum ferritin test. Ask your doctor if the serum ferritin test is right for you. Tracking your transfusions and serum ferritin levels can help you and your doctor know when you should be tested. For an easy way to track your transfusions and serum ferritin levels, use the Transfusion Tracker and Serum Ferritin Diary, available as PDFs in the printable information portion of the additional resources section of this DVD.
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Q: What should I ask my doctor?
A: To get the conversation about iron overload started, ask your doctor if you're at risk, how you can be screened, and about managing iron overload. Use the Doctor Discussion Guide, available as a PDF in the printable information portion of the additional resources section of this DVD, to help you get the conversation started.
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Q: Does my doctor need to know about every transfusion I've ever had?
A: Yes. Because iron in your body does not go away on its own, it's important to tell your doctor about every transfusion you've had in your lifetime. Some people find it difficult to remember how many transfusions they've had. That's why it's a good idea to write them down. Use the Transfusion Tracker, available as a PDF in the printable information portion of the additional resources section of this DVD, to record all your transfusions. Then take it with you to your doctor's visit. The more information your doctor has about your transfusion history, the easier it will be for him or her to decide about when you might need screening for iron overload.
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Q: Should I share my Serum Ferritin Diary with my doctor each time I have a doctor's visit?
A: Yes. The more information your doctor has about your transfusion history and serum ferritin levels, the easier it will be for you to get screened and diagnosed.
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