Receiving a diagnosis of vasculitis can be overwhelming. The Vasculitis Foundation encourages patients, their family members and caregivers to learn as much as possible about vasculitis so they can effectively manage the disease.
Assemble your medical team.
Patients with vasculitis often have multiple specialists treating the disease. It is very important that your medical team be experienced in treating vasculitis. Types of specialists may include but are not limited to:
• Cardiologist (heart)
• Dermatologist (skin)
• Hematologist (blood)
• Infectious diseases
• Nephrologist (kidney)
• Neurologist (nervous system)
• Ophthalmologist (eye)
• Pulmonologist (lungs)
• Rheumatologist (rheumatic)
• Urologist (urinary tract and urogenial system)
Collect business cards at all of your physicians’ offices so you have their contact information. (You can buy inexpensive business card holders at local office supply stores.)
Make sure all of your team members know of each other and provide contact lists with their information (phone/fax/email/website) to put in your medical records at each office. (Include a date on the list so you can update as needed.)
Identify a team leader. The leader will be responsible for conveying to the entire team decisions on treatment, changes in medications, procedures being performed, test results and side effects and other concerns.
Make sure your family physician, dentist, eye doctor, chiropractor and other health care professionals know about your diagnosis of vasculitis.
Ask your medical team how they prefer to communicate with you. Do they:
• Email (ask if they charge to read/respond to emails?)
• Talk to the office front desk
• Talk to the physician’s nurse
• Does the office use electronic records? If so, can your records be mailed to you if you prefer (if you have limited or no computer access)?
• How are medical records (test results, etc.) distributed between the other team members?
Start a journal – either electronic or three-ring binder/notebook to collect all of your medical information together. Track your appointments, procedures performed, test results and all medications, including doses and any side effects.
Write down any questions that you think of between visits and then before each visit, prioritize them so that the most pressing questions are asked first and addressed.
Ask someone to go with you to appointments to take notes. Fatigue and brain fog are often side effects of the medications patients take and both can make it hard to concentrate on what the physician is saying.