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Learn more about a rare, underrecognized, and underdiagnosed condition known as ATTR‑CM (transthyretin amyloid cardiomyopathy). Create your own customized guide to help you prepare for your next doctor visit.
Create your own customized doctor discussion guide
Simply answer these 4 questions to receive a guide that can help you prepare to talk with your cardiologist.
01
Have you (or the person you’re researching for) ever been diagnosed with heart failure?
ATTR‑CM is a rare, underrecognized, and underdiagnosed cause of heart failure, so this response ends your session
While you or someone you’re researching for have not been diagnosed with heart failure, it is always important to talk to your doctor about your full medical condition, including any changes in your health you may have experienced. Advocationg for yourself (or someone you’re researching for) and asking your doctor questions can help you get many answers that you need.
If you’re curious to learn more about this rare, underrecognized, and underdiagnosed condition, keep exploring the Your Heart’s Message site.
03
Please share a little more information.
Age
18-49
50-60
61-70
Over 70
Ethnicity
Black/African American
Asian
Caucasian
Hispanic
Other/Prefer not to answer
Gender
Male
Female
Other
Family History
Click here if you (or the person you are researching for) have a family history of heart failure.
04
Please select any current or previous symptoms/conditions. You will also have the option of indicating the duration of the selected symptoms/conditions.
Fatigue (excessive tiredness)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Eye disorders (eg, glaucoma)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Tendon rupture (eg, biceps, Achilles tendon)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Shortness of breath
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Irregular heartbeat (cardiac arrhythmia)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Stomach issues (eg, diarrhea, constipation, nausea, or feeling full quickly)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Carpal tunnel syndrome (numbness, tingling, or pain in fingers)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Pain or numbness in lower back/legs due to narrowing of lower spine (lumbar spinal stenosis)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Shoulder, hip, and/or knee pain
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Swelling in lower legs (peripheral edema)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
Decreased or strange tingling sensation/pain in toes/feet (peripheral neuropathy)
How long have you (or someone you're researching for) been experiencing symptoms?
Less than a year
1-2 years
Over 2 years
I (or the one I’m researching for) have not experienced any of these symptoms.
You’re all set
Your Discussion Guide may help make the next conversation with your cardiologist more productive.
This guide is not intended to be used as a diagnostic tool and should not replace discussions with a patient’s healthcare provider. Any individual information you enter about yourself will only be viewed in the aggregate with other collected responses.
PLEASE PROVIDE THE INFORMATION BELOW TO RECEIVE YOUR DISCUSSION GUIDE.
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Close
Talking to your doctor
It is important to talk to your doctor about the symptoms you are experiencing. They could be caused by something more serious than you realize, like transthyretin amyloid cardiomyopathy (ATTR‑CM).
Not interested in creating your own guide?
Dempsey’s Heart Talk
What to bring to your visit
Remember, Your Heart mATTRs!
When it comes to ATTR‑CM, getting the message is all about being proactive. While overall awareness of ATTR‑CM is low, advocating for yourself or a loved one with the disease and asking your cardiologist questions can help you get many of the answers you need.
Signs and symptoms
Let your cardiologist know if you have heart failure and any of these signs, symptoms, or conditions:
- Heart failure with preserved ejection fraction (HFpEF)
- Fatigue
- Shortness of breath
- Swelling (edema) in the legs and feet
- Irregular heartbeat (cardiac arrhythmia)
- Heart and blood pressure medicines make you feel worse
- Diagnosed with carpal tunnel syndrome in both wrists
- Hand pain, numbness, or tingling in your fingers
- Pain or numbness in your lower back or legs, which may be caused by lumbar spinal stenosis, or narrowing of the lower part of the spine
- Atraumatic biceps tendon rupture
- Knee or hip replacement
- Gastrointestinal issues, such as nausea, diarrhea, or constipation
- Unexplained weight loss
- Lightheadedness when you stand up
While these signs and symptoms don't necessarily indicate that you have ATTR-CM or another condition, any one or combination should be mentioned to your cardiologist. The more you tell your doctor, the better they can help you understand your condition.
Family medical history
ATTR-CM can be hereditary. To the best of your ability, make note of any heart-related issues associated with your relatives on either side of your family.
Your medical history, records, and test results
You may have already seen several doctors to understand why you are feeling discomfort. If you’ve had any tests like an electrocardiogram (ECG) or echocardiogram (ECHO), sharing the results with your cardiologist can help. Previous heart surgeries may also prohibit certain types of testing for ATTR‑CM, so be sure to note if you’ve had any procedures or device implantations.
List of questions
ATTR-CM can impact each patient differently, and your family, work, and social needs may differ. Be open about your questions and concerns.
You may consider asking some of the following questions:
- Based on my symptoms, medical history, and family history, do you think ATTR‑CM could be the cause of my heart failure?
- Do you have experience diagnosing ATTR‑CM, or can you recommend a local specialist?
- Do I need additional tests to confirm my diagnosis? If so, whom at your office should I speak with, and will the results of my test impact my treatment plan?
- How quickly could this condition progress?
- I understand this condition expresses itself in a variety of ways. Should I seek additional specialists to be a part of my care team?
- Are there any patient support or advocacy groups you recommend for emotional and mental support or additional information on ATTR‑CM?
- If ATTR‑CM is determined to be the cause of my heart failure, how can I manage my disease?