Alpha-1 Antitrypsin Deficiency Survival Guide: 10 Things You Need to Know by Samantha Bowick
Been diagnosed with alph-1 antitrypsin deficiency? Here's your survival guide to help get you through it!
- Understand Your Diagnosis: Take a step back and evaluate where your body is. It is important to understand your body, alpha-1 antitrypsin deficiency, augmentation therapy and lifestyle changes. Research all of your options. Do not let your doctor pressure you into any treatments you are not 100 percent on board with.
- Form a Team: You cannot do it alone. From physicians to family, it takes teamwork and specialists to put alpha-1 antitrypsin deficiency on the defense. Having support is crucial in fighting this illness. On days when we don’t feel like pushing to find answers anymore, those support people in our lives keep us going. It is important that you feel like your doctor is listening to you. If you don’t feel this way, it may be time to find a new doctor. Connecting with others who also suffer with alpha-1 antitrypsin deficiency can be extremely helpful because they understand more of what you are going through, can relate to what you are going through and validate how you’re feeling without making you feel judged. This can be a great tool for coping.
- Research, Research, Research: Researching alpha-1 antitrypsin deficiency and everything that comes with the illness is crucial. Books, websites and support groups are just a few research tools available for those who suffer with alpha-1 antitrypsin deficiency.
- Know Your Medications and Treatment Options: There are several different types of medications that doctors may prescribe to try to combat symptoms related to alpha-1 antitrypsin deficiency: augmentation therapy, inhalers, nebulizer medications, antibiotics, anti-inflammatories, as well as others.
- Keep a List of Your Symptoms: Keeping a list of the symptoms you are/have been experiencing can help you and your doctor determine what is going on and the best course of action. It can also help you remember what to tell your doctor during your appointment as doctor appointments can be overwhelming and cause anxiety. Also, keeping track of your oxygen saturation level can be helpful to determine if it is regular or irregular as pulmonologists usually check this at appointments.
- Know Risk Factors for Other Diseases: Unfortunately, alpha-1 antitrypsin can also come with comorbidities, or other diseases. These include, but are not limited to: chronic obstructive pulmonary disease (COPD), emphysema, asthma, bronchitis, influenza and pneumonia. Make sure you know about these in case they come up while suffering with alpha-1 antitrypsin deficiency or breathing difficulties.
- Be Kind to Yourself: When you don’t feel well, remember it is OK to take time for yourself, whether it’s to sleep/rest, take a relaxing bath or turn down plans because you don’t feel well. Other people may not understand, but that’s OK. They may not know or understand what you are going through, but it is important for you to take care of your body however you think you need to.
- Decrease Stress: It is hard to decrease stress, but it is important for those who suffer with breathing illnesses to decrease their stress as much as possible as added stress can impact breathing. Exercise if you are up to it, yoga, reading, writing and coloring are just a few things you can do to try to decrease stress and have a release.
- Stay Up to Par Mentally: One of the hardest parts of alpha-1 antitrypsin deficiency is not being able to do the activities you once could. This can lead to self-doubt, depression, stress, and anxiety. It is important to stay as positive as possible for your health.
- Stay Committed: Improving your health and daily life requires an unwavering commitment to the principles and tenets of living with alpha-1 antitrypsin deficiency. The most important factor in putting alpha-1 antitrypsin deficiency on the defense is to make a commitment to finding answers if you haven’t already and do everything in your power to stay as healthy as possible. It’s important to remember everybody is different and something that works for you may not work for someone else.
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