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Talking to Your Doctor

Management of your PASC-related symptoms will likely require a team approach that includes multiple doctors and health care providers. A health care team for PASC might have a good primary care doctor in addition to specialists and other medical professionals as needed. Ultimately, the most important member of the team is the person with PASC as the one responsible for learning about the illness and making necessary changes in daily habits.

Navigating care for conditions like PASC can be a challenge and may seem daunting. Below are some tips and resources that you can use for before, during, and after your doctor visits.

Before Your Visit

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  • Be prepared. Before making an appointment, make sure that the doctor you are seeing accepts your health insurance.
  • Make lists of your questions and symptoms ahead of time. Write down your thoughts about how treatment is going.
  • Prioritize your concerns. If you want to talk about more than two or three items, make a list and put the items in order of importance. That way you can make sure to talk about the most important items first.
  • Think about what to bring with you. Bring a copy of your health history to your appointment, especially if it is your first visit to a particular doctor. Your health history may include a record of the dates and results of past tests, major illnesses, hospitalizations, medications, chronic illnesses, allergies, and a family history of any physical and mental illnesses. Make sure to bring all relevant health insurance cards.
  • Bring someone you trust to your appointment with you. Tell them what you want to get out of the appointment ahead of time. They can help you remember what you want to discuss and take notes for you during the appointment.
  • Schedule regular appointments to talk about managing your symptoms, to address your concerns, and to track your progress. This can be a more helpful way to manage your symptoms instead of making appointments only when symptoms worsen.
  • Track your symptoms with a symptom journal. Write down in your calendar or a notebook the types of symptoms you experience and their intensity. This information can be helpful to both you and your doctor in tracking your medical condition and it can help you identify potential triggers that aggravate your symptoms. See the ‘Symptom and Activity’ monitoring tab in the PASC guide for one example of symptom tracking.

During Your Visit

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  • Share information. Tell your doctor about any current symptoms or concerns during your visit. Explain how you feel physically, share your emotions, and give examples. Tell your doctor if you are having trouble with activities of daily living, such as bathing or dressing. Tell your doctor about other health care providers (like specialists or therapists) you have seen and any treatments they have prescribed or recommended.
  • Take notes at office visits to make sure you understand and remember what you need to do. Bring a pen and paper to your appointment so you can write down what your doctor tells you.
  • Audio record your visit so that you can play it back later. This way you can be sure that you don’t miss any information and get the most out of your doctor’s appointments.
  • Ask questions and be direct with your provider. If you do not understand something your provider says, ask him/her to explain it. Ask the same question more than once or ask if your doctor can explain something in a different way, if you need more time to process an answer. If you need further clarification, consider scheduling a phone conversation or speaking to a nurse or other provider.
  • Get it in writing. Ask your doctor to write down what you should do between now and your next visit. This may include instructions for how to take medications, specialists you should see, and/or lifestyle modifications.
  • Be brave! Health issues can be hard to talk about, but it is important that your doctor has as much relevant information from you as possible so that her/she can recommend the best possible care.
  • Work together with your healthcare provider to get the best treatment possible. Respecting each other and meeting regularly can help your relationship.

After Your Visit

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  • Keep a medical folder of health papers, including those you take to office visits and those you get from your healthcare provider. A medical folder is good to have in case you switch healthcare providers, travel, or want to have a medical history.
  • Take charge and follow the plan your healthcare provider gives you. If you have problems, or your condition worsens or changes, call to report it. Do not wait for a problem to become too big before seeking medical help.
  • Don’t worry that if you start to feel better, your healthcare provider will stop seeing you. Your treatment is an on-going process, and he or she needs to know when you are having both bad and good days.
  • Find a new doctor. You have the right to change doctors. To switch doctors within the same office, talk to someone at your physician’s office directly. To change your provider completely, try contacting your health insurance.
  • Utilize electronic health records as another resource for navigating healthcare. Many clinics and hospitals offer an online health portal where patients can communicate directly with their physician. You may also be able to refill prescriptions and access ‘after-visit summaries’ of your appointments through this resource. Ask your physician if they offer this resource and how to set up an account.

Your Healthcare Team

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To seek clinical care for your PASC symptoms, a first step may be seeing your primary care provider or a doctor at an urgent care clinic. In addition to directly treating your symptoms, these doctors may refer you to other resources or health care professionals. These can include:

Supplemental Resources:

  • Social Worker: A medical social worker helps a patient understand hospital procedures and medical plans, as well as helping with the patient and the patient’s family with financial planning. The social worker will also facilitate communication between the patient, their family, and their healthcare team.
  • Patient Advocate: A patient advocate will help you with all the steps of receiving care, such as finding the right doctors and choosing the best treatments. Medical billing advocates help you to understand your bills, contest inaccurate billing and negotiate for costs to be lowered.
  • Case Manager: Case managers oversee everything that happens to patients from the moment of admission, during treatment and up to discharge from a hospital or another healthcare facility. These professionals provide guidance for the long-term care of patients, which includes decision-making about any important treatment options.
  • At-Home Care: There are other healthcare resources that can be utilized in the comfort of your own home. For example, you can hire a caregiver or a nurse. Caregivers do not perform medical care, instead, they help with activities of daily living and provide companionship for their clients. Nurses are licensed to perform skilled care. Nurses are usually in charge of implementing specific instructions set forth by a doctor. Nurses also monitor the progress of a patient as they recover from serious illness or injury.

Mental Health Resources:

  • Psychiatrist: A psychiatrist is a medical doctor that specializes in mental health. They can prescribe medication and perform procedures. If you are experiencing debilitating mental health symptoms that are interfering with your daily life, a psychiatrist may be a good place to start.
  • Group therapy: This is a type of therapy where a group of patients meet to discuss their mental health or other topics under the supervision of a therapist. Group therapy is an affordable and effective alternative or supplement to individual therapy. Some groups are geared toward specific issues, such as depression, anxiety, substance abuse or obesity, while others focus on helping people deal with a variety of issues such as anger or low self-esteem.
  • Counselor: Counselors offer guidance to individuals, couples, families, and groups who are dealing with issues that affect their mental health and well-being. They work with clients on strategies to overcome obstacles and personal challenges that they are facing.
  • Psychologist: Practicing psychologists have the professional training and clinical skills to help people learn to cope more effectively with life issues and mental health problems. People may see a psychologist because they are depressed, angry, or anxious for a long time. Or they want help for a chronic condition that is interfering with their lives or physical health.

Rehabilitation Resources:

  • Occupational Therapist: Occupational therapists treat injured, ill, or disabled patients through the therapeutic use of everyday activities. They help these patients develop, recover, improve, as well as maintain the skills needed for daily living and working. Patients typically see an occupational therapist to regain function in their daily life, help manage chronic pain symptoms, and prevent future injury.
  • Physical Therapist: Physical therapists help injured, or ill people improve movement and manage pain. They use exercises, stretching maneuvers, hands-on therapy, and equipment to ease patients’ pain, help them increase their mobility, prevent further pain or injury, and facilitate health and wellness.
  • Respiratory Therapist: Respiratory therapists help improve outcomes for people with asthma, pneumonia, emphysema, lung trauma, and other diagnoses. They assess your breathing, recommend exercises, and monitor your progress.
  • Speech-Language Pathologist (SLP): SLPs can treat speech and cognitive-communication, as well as other disorders. Speech disorders occur when a person has difficulty producing speech sounds correctly or fluently (e.g., stuttering is a form of disfluency) or has problems with his or her voice or resonance. Cognitive-communication disorders include problems organizing thoughts, paying attention, remembering, planning, and/or problem-solving. If you are experiencing these symptoms, a speech-language pathologist may be helpful for you.
  • Chiropractor: Chiropractors seek to reduce pain and improve the functionality of patients as well as to educate them on how they can account for their own health via exercise, ergonomics, and other therapies. They use a variety of non-surgical treatments, such as spinal manipulation and mobilization, to treat patients with chronic pain.

Getting More Help - Social Assistance & Transportation

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Social Assistance Application: Social services are administered through your state’s Department of Human Services (DHS). Often, they have online applications that you can use to apply for food stamps as well as Medicaid, state disability aid, state emergency relief, childcare, and other services. These programs are state specific and administered at the county level. Each state has their own DHS website or visit the DHS office local to your county for more information.

Transportation Assistance for Medical Appointments:

  • Insurance companies: The Department of Human Services transportation application provides free medical transportation. Check with your insurance provider to see if you are eligible for this service.
  • Auto insurance and Workman's Compensation: The only other insurance companies that cover transportation for medical appointments are auto insurance, related to injuries sustained in an automobile accident, and Workmen’s Compensation insurance for appointments related to injuries sustained at work. Check with your health or auto insurance provider to see if they cover transportation for medical appointments.
  • Transit/Bus Companies: Metropolitan area transit/bus companies will often have a program for those who require a door-to-door transit pick up service, due to a disability. Contact your local transit company to find out if they offer this program.
  • Older Adult Service Agencies: These agencies will offer transportation resources for older adults. For example, the Area Agency on Aging is a program that administers resources to those 60 and over as well as for disabled individuals, including transportation. Find your local Area Agency on Aging.