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:
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:
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.
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:
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:
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:
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:
The National Institutes of Health provide valuable information on stress and stress management: http://www.nlm.nih.gov/medlineplus/ency/article/001942.htm.