CTEPH PATIENT/DOCTOR CHECKLIST:
Questions About Testing for CTEPH
□ Will I need radiographs or x-rays to determine if I have CTEPH? Which kinds?
□ Where will the testing take place for each test?
□ Are any of these tests invasive?
□ Do any of these tests have side e ects?
□ Will I be able go home after each test?
□ Will I need exercise or breathing tolerance tests?
□ Will I need CT scans or MRI tests?
□ Will I need an echocardiogram?
□ How long will it take to complete testing and have a diagnosis?
□ Will I have to have a right-sided heart catheterization?
Questions About Your Diagnosis
□ Do I have pulmonary hypertension?
□ Do I have CTEPH?
□ What did each test tell you about my condition?
□ How would you grade the severity of my CTEPH – mild, moderate, or severe?
□ Did any of the tests show signs of heart failure? If so, what kind?
□ What are the next steps?
Questions About Your Treatment
□ How quickly do we need to act, and why?
□ How long does it take to recover from the surgery?
□ Do I need/qualify for surgery?
□ Do I need to take blood thinners?
□ What happens during the (pulmonary thromboendarterectomy) surgery?
□ Will I need to take any other medications? If so, what are they and what will they do?
□ What medical facility is used for this surgery?
□ Where can I find reliable information and support related to CTEPH?
□ What are the risks of the surgery?
□ How often will I need follow-up testing?
□ How likely is it that surgery will resolve my condition?
□ Do you have experience with CTEPH? How many patients do you see with this problem?
Questions About Your Lifestyle
□ What can I do to help control my disease?
□ Do I need to adjust my diet? If so, how?
□ Do I need to change how much fluid I drink?
□ Do I need to lose or gain weight?
□ Can I continue smoking?
□ Will I need oxygen therapy?
□ Can I/do I need to exercise? What kind of exercise? Where can I get support?
□ (If applicable) Will being overweight mean I can’t have the surgery?