Nobody ever asks for a diagnosis, much less, expects it. But if you find yourself struggling to accept less-than-ideal news, it doesn’t hurt to be informed.
Here are five questions that may help you start a conversation with your doctor, best friend, or spouse after an aplastic anemia diagnosis:
- What is aplastic anemia?
It might seem obvious, but this is a good place to start. Make sure you fully understand the disease. Aplastic anemia occurs when bone marrow stops creating stem cells. Stem cells create your blood cells—red, white, and platelets—which stop producing when stem cells aren’t being made. It’s the low blood count that causes other health issues and symptoms.
2. Who’s the best kind of doctor to treat aplastic anemia?
Finding a doctor with experience and expertise in aplastic anemia is best. These healthcare teams probably include doctors who specialize in blood diseases and cancer. As a first step, call a teaching hospital that’s affiliated with a university in your area and ask for the name of a doctor with experience in aplastic anemia treatment.
3. Should I get a second opinion?
The simple answer? Second opinions never hurt. If you feel more comfortable getting a second, fifth, or eighth opinion, do it. But, be prepared to possibly hear the same answer. However, different doctors can offer different perspectives on treatment and next steps, so don’t give up until you find a team you trust and feel comfortable with.
4. I don’t know what “watchful waiting” means. What is it?
If your doctor mentions “watch and wait” or “watchful waiting,” he/she is likely referring to your blood count. Your healthcare team may believe your symptoms aren’t too bad and your blood count isn’t too low. This approach is usually recommended to people in the early stages of aplastic anemia
5. What questions should I ask my doctor and healthcare team?
Be really honest with your team. If you’re wondering something, ask. However, these additional questions may help you get started:
- How severe is my disease?
- What subtype of aplastic anemia do I have?
- What are my treatment options?
- When can I expect treatment to start working?
- What side effects should I be aware of?