Living with a chronic disease like transthyretin amyloid cardiomyopathy (ATTR-CM) over a number of years leads to complex medical records. They tell the story of your journey, which for most patients usually means multiple specialists, tests, symptoms and treatments. Maintaining a structured filing system — either print or digital — will give you a clear overview of your medical history and ensure you have quick access to all documentation, making it easier to play an active role in your care.
What medical records do you need to manage and file?
Your medical records cover the chronological history of your experience with ATTR-CM. Keeping comprehensive, detailed records will improve your understanding of your disease and how it is managed.
- Your multidisciplinary healthcare team: You will need to consult your primary healthcare provider as well as specialists such as a cardiologist, neurologist, hematologist, nephrologists, genetic counselor, ophthalmologist and gastroenterologist. Keep an up-to-date contact list of the specialists you have visited and your main care team.
- Your test results and reports: Diagnosis of ATTR-CM may mean a bone scan, a cardiac MRI, an ECG, blood tests, a possible biopsy and genetic testing. Throughout your treatment, blood tests and imaging will monitor disease progression and the effectiveness of your care. Keep the lab results and the reports or summaries compiled by your doctors.
- Your list of medications: Record all medication information, including dosing and potential side effects. Make sure your prescriptions stay up-to-date. If you change medications or dosing, keep a record of what you previously took.
- Your personal notes from doctors’ appointments: Making notes during your appointments can help you keep track of all the details and information you receive. Keep a record of what was discussed and the answers to any questions you had in case you want to refer back to this information at a later date.
- Your detailed descriptions of symptoms: New symptoms or changes in symptoms should be shared with your healthcare team. Tracking your symptoms can help you spot when they change over time, such as fatigue becoming more frequent. Note down a description, when it started, its severity, and how long it lasts. You should also track any side effects to medications.
Read more about testing and diagnosis of ATTR-CM
Ways to keep track of your medical records
The easiest way for you to manage your medical records will depend on your preference for either hard copies or a digital filing system.
- Hard copies: A binder, accordion file or filing cabinet can be customized to create an alphabetical, chronological filing system. Paper copies of all your documents can be very easy to keep track of, if you set up a structured, clearly labeled system.
- Digital filing: If you are more digitally minded, you might prefer scanning your paper copies and asking medical secretaries for electronic files. You will then be able to store them on your computer or in the cloud for easy access from your smartphone or personal computer. Another option is signing up for access to a patient portal — ask your healthcare team for advice on this, as not all hospitals and doctors use one yet.
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