What bigger crisis does one face than learning their child has been diagnosed with a chronic condition? It’s virtually impossible to collect your thoughts, let alone organize them. For me, organizing the many aspects of my life after receiving that news alleviated some of the stress and allowed me to focus on helping my child. You need to navigate through mazes of information that must first be acquired, then digested and finally stored. In a crisis situation we tend to look at the total picture, which is extremely overwhelming. Instead, we need to break down “life” into tiny more manageable little bites. Then we can take control of it rather than having it take control of us.
Learning how to acquire, understand, utilize and store pertinent medical information and knowledge makes us better informed and more actively involved with our own medical care. This organization leads to less medical errors, shorter hospital stays, increased positive outcomes, the motivation to seek preventive care and the skills to negotiate the health care system. Why do I know this?
Seventeen years ago, without warning, I was catapulted into the healthcare arena diagnosed with breast cancer a mere three hours after my daughter was diagnosed with Crohn’s disease. We were simultaneously thrown into a world of second opinions, diagnostic tests, invasive procedures, surgeries, and countless medical personnel. Even with my medical background and highly organized nature, dealing with this crisis was overwhelming. I found that documenting everything into a notebook was extremely therapeutic and a highly effective way to manage our complicated medical journeys. Stress was relieved knowing that our vital information was consolidated and immediately retrievable. I needed to organize my health information for obvious reasons. My quest to become more organized resulted in the creation of my book Otherwise Healthy.
Here is some advice to help you maneuver through the myriad of medical mazes and . . . Organize the Chaos!
1. Review your health insurance coverage.
Request the assignment of a “case manager” whom you can “bond” with to facilitate consistency on all medical insurance needs.
Maintain records of all contact with insurance personnel including date, time, with whom you spoke, and a synopsis of the conversation.
Understand the limitations and restrictions of your coverage.
2. Document information concerning diagnostic tests.
Learn the names and direct telephone number for the scheduling personnel as they will become very important allies in the future. Schedule tests for early in the day to avoid later day back-ups, minimize pre-test anxiety time, and restrictions on eating should the pre-test preparation include orders such as “nothing by mouth” for twelve hours.
Determine where all previous test results (slides, films, reports, etc.) are stored, and the contact information of those able to assist accessing them. Make sure previous tests are on hand to compare with the new results.
3. Consider a second opinion if diagnosis or treatment plans are indeterminate.
Obtain all necessary insurance approvals and referrals to ensure maximum coverage and reimbursement.
Establish who your contact person is at the “second opinion” facility. Learn exactly what you need to bring with you and whether some information can be sent in advance of your visit. Never send original slides or films as these are your baseline results against which future tests will be measured to see how you are progressing.
Prepare detailed questions ahead of time and present them to the doctor at the beginning of the visit. The doctor can then help ensure those areas are covered in your allotted time together.
Bring a detailed medical history and a current medication list.
4. Complete ordered tests in advance of your doctor’s appointment.
Call ahead to ensure that your doctor has received your test results (i.e. blood work, follow-up x-rays and scans).
Maintain a log of all lab results to track your progress.
5. Prepare a list of daily tasks that people can help you accomplish so you can focus on your child.
Match each task with a “helper,” noting their name, telephone number and availability.
Organize the “information dispersers” – a group of close friends and family who will be updated regularly and who will then keep the rest of the world abreast of the news. This will avoid the incessant ring of the telephone and allow you to spend more time with family.
Organize the meals your friends have volunteered to deliver so you don’t end up eating lasagna every night.
6. Understand all of the aspects of the treatment plan.
Understand possible treatment side effects and keep track of any experienced. List the exact names and dosages of prescribed drugs. Plot out medications taken at home on a daily calendar.
7. Create a schedule of follow-up visits and medical tests for the future.
Schedule follow-up tests at specifically approved time intervals to ensure coverage by your health insurer.
8. Join a support group!