Managing your primary immunodeficiency (PI) is one of your many responsibilities, in addition to making decisions about what to eat, how much to sleep, and what activities and exercise you do. Making positive lifestyle choices is essential, and your overall health will be affected by these choices. Those who best manage their PI are those who find a balanced approach to healthcare and to life. It is understandable that you would often want a break from focusing on PI, yet neglect of symptoms or treatment routines can lead to serious health setbacks. It is critically important to properly manage your disease, including your necessary therapies, while maintaining all the activities and relationships that promote a healthy lifestyle.
Take Control of Your Healthcare
If you were diagnosed while living with your parents, they may have helped you transition much of your care to yourself throughout the years. Ideally, you should be able to manage all the responsibilities listed on IDF’s 18+ Healthcare Checklist. If this is the first time you are taking control of your healthcare, take a look at this checklist. Then, talk to your parents and healthcare providers to gather as much information as possible. They know your illness, treatments and what is involved in your care, and they understand insurance, which you can learn more about here. Knowing these things is a good start in taking control of your healthcare.
Explaining Your Diagnosis in the Healthcare Setting
Since PI is rare, there will be times you will need to explain your diagnosis to a healthcare professional. Outside of your clinical immunology team, there are many medical professionals that do not know a lot about PI. IDF says, “THINK ZEBRA!” In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with PI are the zebras of the medical world. It will be up to you to explain your diagnosis and treatment to these medical professionals. Look at this as an opportunity to create awareness about PI and encourage them to THINK ZEBRA! Click here for tips on how to explain PI. You can also share IDF’s publications with them:
- IDF Patient & Family Handbook
- IDF Diagnostic & Clinical Care Guidelines for Primary Immunodeficiency Diseases 2nd Edition
Understanding the Importance of Treatment
You make decisions of your own and it is up to you to schedule appointments, treatments and fill prescriptions. It helps to fully understand your specific diagnosis, medications and treatment to make wise choices. You should also know the consequences of not adhering to your current treatment. For most individuals with PI, treatment is life-saving as well as life-long. Consult your immunologist about the vital role your treatment plays in your overall, long-term health. If you receive immunoglobulin (Ig), you may have options when it comes to your treatment, such as subcutaneous (SCIG) or intravenous (IVIG).
Working with Your Healthcare Team
If you choose to move away from home or you need or want to change your primary care physician or other clinician, you will need to create a new healthcare team. You may be used to your parents making all healthcare decisions, but now, it is up to you. At the age of 18, you are legally considered an adult. Parents are no longer able to access your healthcare records or speak to your healthcare team without your written permission. Consequently, it’s important for you to become familiar with all aspects of your care. Whether transitioning to a completely new area or staying within the same care facility but assuming responsibility for your own care, you need to be your own best advocate. Below is recommended information to record and keep readily available in a journal or in the IDF eHealthRecord:
- Brief history leading to the diagnosis, written by you or your healthcare provider. If you do not have this information, it will be important to start piecing it together.
- Copies of laboratory evaluations confirming the diagnosis
- Current list of healthcare providers caring for you with accurate addresses and phone numbers
- Chronology of important events such as infections and surgeries, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to the treatment, therapy, infection, surgeries and/or hospitalizations
- List of your current medications
- Allergies to medications
- Infusion log if you receive immunoglobulin (Ig) replacement therapy
- Immunization record or lack of immunization
- Current insurance information
- Explanation of benefits records can be kept in the journal or separately but should be periodically reviewed for accuracy
When transitioning your care, the first step will be making sure your healthcare team understands PI and will work with you to manage your care. Your current provider should be able to transfer your medical records and help identify medical professionals that will work with you. Click here for questions to ask while evaluating a healthcare provider or facility. IDF can also help you find a clinical immunologist. Click here to receive a list of providers in your area.
Managing your healthcare is a process. It is not something that happens all at once. Work with your parents and healthcare team to develop a plan for a smooth transition. Perhaps you have already taken control of your healthcare management. It may have taken several years to get to this point. Wherever you are in this process, healthcare management is an integral part of independent living.
In addition to having a knowledgeable, caring healthcare team, learn as much as possible about your diagnosis and treatment. Follow these guidelines to become your own healthcare advocate.
- Ask questions about your diagnosis, treatment and plan. If you do not understand, ask again.
- Understand the treatments you are receiving and why they are important to your overall, long-term health.
- Track your health, treatments, medications and appointments in the IDF eHeathRecord or journal.
- Inquire about what can be done to improve your health such as diet, physical activity, sleep and social activities.
- If attending school, maintain consistent communication with the school in the event you miss days.
- Know your insurance policy and communicate if there are any changes to your provider.
- Understand the difference between a primary care provider and a specialist.
- Build positive relationships with your providers, therapists, etc. Know whom to call when.
- Ask about resources for further information at the local, state and national level.
- Connect with IDF for additional resources and support.
Maintaining Your Physical Health
Nutrition - Good dietary habits are important for everyone, but they are especially important for people with a PI. Eating a variety of foods, maintaining an ideal body weight, and limiting the intake of fat, cholesterol, sugar, salt and alcohol will keep the body strong. If you struggle with making and keeping a dietary plan, you may want to consult with your healthcare provider who is familiar with your condition and will be an excellent resource for establishing a plan for a healthy diet. Remember, there is not a nutritional supplement to replace the treatments for PI and many related illnesses. Always consult with your healthcare provider regarding nutritional supplements.
Sleep - Getting an adequate amount of sleep is essential for good health. Most sleep experts recommend consistent sleep patterns. Erratic sleep patterns have shown to have negative effects on the immune system. Some helpful sleep guidelines include:
- Go to sleep and wake up at roughly the same time each day.
- Avoid late nights and long naps during the day.
- Avoid drinking caffeine or alcohol in the evening.
- Avoid eating big meals in the evening or snacking before bedtime.
Exercise - A healthy lifestyle always includes exercise. Having PI should not keep you from exercising. You may have some limitations, however, depending upon your type of PI. Consult with your healthcare provider before you start any exercise routine. The following need to be considered before you start working out:
- Current level of fitness. The success or failure of your exercise routine will depend upon starting at a level of exercise you can handle physically and mentally. Your plan needs to be realistic. Most people quit their exercise routines because their initial workouts are too extreme and unrealistic for their current level of fitness. The key is to start an exercise routine that you know you can follow through on day after day. Consistency is the key. Then, as your fitness level improves, the intensity of your workout can increase.
- Avoid comparing yourself to others. As a person with PI, it is particularly important that you design an exercise routine that you know your body can handle. This is not about trying to keep up with anyone else. You know how much your body can take.
- Do the things you enjoy. Think about all the possible activities that can make you more physically fit. People usually think about all the obvious choices: running, biking, swimming, skiing, fitness gyms or playing a sport. These are great options, but the reality is that there are many other activities that are non-sport related that can help with your fitness. For example, walking the dog, dancing, gardening and yard work are all activities that can improve fitness.
- Have goals. Goal setting is important. You should have short term and long term goals. Again, being realistic and honest with yourself will allow you to set goals that are achievable.
Exercise will make you more physically fit and help your mind also. It is well-known that exercise helps relieve stress and anxiety. Being physically fit will also improve your mood and attitude. Click here for more information about general care, including nutrition, sleep and exercise.
Caring for Your Mental Health
People living with chronic illnesses know the physical toll it takes on the body. But living with a chronic illness also takes an emotional toll. Understanding how you are feeling mentally is as important as understanding how you are feeling physically. When you are physically tired and run down because of your PI, it may be a down time for you mentally too. Emotions affect the quality of your life. Let’s face it, life can be an emotional roller coaster. Accepting and managing your emotions is a lifetime work in progress—the key word is managing.
There is a strong link between physical and mental well-being. Ignoring your feelings can hurt you mentally and physically. Being that you are already more susceptible to illness, managing your emotions is even more important. To care for your mental health:
- Remember that you are not alone. There are other people with the same condition you have that are feeling the same way. Many patients with PI connect through social media, and IDF has created IDF Friends, a social network developed specifically for those living with PI. Click here to get connected with others through IDF Friends. In addition to IDF Friends, IDF has a peer support program that will network you with other young adults. Click here for information about peer support. You could also attend an in-person IDF event, like the IDF National Conference, Retreat or a local patient meeting – they are all opportunities to connect with others. Click here for a list of upcoming events. You may form valuable relationships that can be both rewarding and supportive.
- Be honest with yourself and others about how you are feeling. Your feelings are real. If you resent the fact that you have this disease, you will need to admit to yourself that you have this feeling of resentment.
- Once you have identified exactly how you feel, you can find help. Sometimes it is as easy as sitting down with a friend who will just let you vent. Some people exercise or participate in their favorite activity to feel better. You may require further assistance to cope with the challenges and stress of living with PI. Changes in your overall outlook, feelings of hopelessness, sadness, irritability and isolation may indicate that you may be experiencing clinical depression. Consider seeking professional assistance if symptoms persist.
Dealing with Stress
Stress is defined as the emotional and physical way in which we respond to pressure. The causes of stress are all around us. You may have felt stress when you had to give a speech in school or when you went to your first job interview. As a patient with chronic illnesses, you have an added burden. You not only have to deal with the normal day-to-day stressors, but you also have the stress of managing a chronic illness. You can manage stress by:
- Recognizing the early warning signs that you are feeling stress. The sooner you realize that you are stressed the easier it will be to do something about it. The impact of prolonged stress can be very harmful.
- Figure out all the things that are causing you stress. Make a list so you can identify the stressors that come from within and those that are external stressors. Try to determine which ones you need to act on immediately and which ones will take more time.
- Take action. Look at your list and try to come up with strategies to reduce your stress. Let’s say, for example, that the drive to work is stressful. The solution for reducing the stress might be to carpool or take the bus.
The National Institutes of Health provide valuable information on stress and stress management: http://www.nlm.nih.gov/medlineplus/ency/article/001942.htm.