TTP needs to be treated quickly
Thrombotic thrombocytopenic purpura (TTP) can be life-threatening if it is not treated right away.1-3
How to discuss your TTP treatment with your doctor
Talking with your healthcare team
Talking to healthcare providers can feel intimidating. If this is the case for you, you’re not the only one. But you play an important role in managing your own health, and talking with your doctor can help you get the most out of your TTP treatment. You can talk with them about anything and everything, from what tests they’re doing to whether you are getting the TTP treatments that experts recommend.
Tips for having a productive conversation in the hospital
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Plan ahead. Have your questions ready and make sure you get answers. It’s okay if you have new questions every day! It might help to keep a list in one place (like in your planner or phone) so you can grab it whenever you talk with your care team
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Don’t be embarrassed to ask twice. Or 3 or 4 times! TTP is very complicated, and the answers may be hard to understand. It’s better to keep asking until you understand than to leave the conversation still feeling confused
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Be your own best advocate by being open and honest. It might feel uncomfortable to ask these things, especially if it seems like you’re questioning your care team’s choices. But just be honest. Tell them how you’re feeling and why you’re asking. You might want to start with something like, “I’m feeling scared and anxious, and I just want to make sure we’re doing everything possible to help me get this under control”
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Learn together. Remember that your care team might not be familiar with TTP because it’s so rare. You can ask if they have looked at the ISTH Guidelines and how those play into your treatment plan. You can also ask if they have any resources that will help you learn more about TTP
Some questions you may want to ask:
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Can you walk me through my treatment plan? It would help if you could explain the different parts or steps
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How will you know if my treatments are working?
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Are there any resources that might help me learn more about TTP?
Some questions you may want to ask:
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What should I be doing to stay as healthy as possible?
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What tests will you do to monitor my TTP going forward?
—How often should I have them? -
What should I do if I think I’m having TTP symptoms? Can we put a plan in place that I can share with my family and friends?
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Have you come across any resources that might help me learn more about TTP?
Tips for having a productive conversation after the hospital
- All the above tips still apply, but also consider bringing someone with you to your follow-up appointments. A lot of information can be discussed in one appointment. Sometimes it helps to have another person with you to take notes. They might catch something you don’t, or they can simply write everything down so you can focus on the conversation
Care partners play an important role.
An episode of TTP is a medical emergency. Because of this, you might be very sick and not able to talk to your care team on your own. A care partner, like a significant other, family member, or friend, can advocate for you. They can talk to your care team, ask questions, and make sure you get all the information you need.
Learn about the care team who will treat your TTP and help you stay healthy.
TTP is rare, but you’re not alone. Learn from others who have been there.
References: 1. Scully M, Hunt BJ, Benjamin S, et al; British Committee for Standards in Haematology. Guidelines on the diagnosis and management of thrombotic thrombocytopenic purpura and other thrombotic microangiopathies. Br J Haematol. 2012;158(3):323-335. doi:10.1111/j.1365-2141.2012.09167.x 2. Joly BS, Coppo P, Veyradier A. Thrombotic thrombocytopenic purpura. Blood. 2017;129(21):2836-2846. doi:10.1182/blood-2016-10-709857 3. Gallan AJ, Chang A. A new paradigm for renal thrombotic microangiopathy. Semin Diagn Pathol. 2020;37(3):121-126. doi:10.1053/j.semdp.2020.01.002