One of the best things you can do for your health as an Alpha is to educate yourself on what Alpha-1 Antitrypsin Deficiency is, what it is not, what care you need, and the precautions you need to take to keep yourself healthy.
At the latest Alpha-1 event,
The reason education is so high on his list is because he’s seen the results… those who understand their diagnosis and have researched their care are more likely to take their medication, have fewer, shorter and less severe exacerbations, fewer hospital and ER visits, use
Dr. Chapman suggested keeping a binder. In it, you would keep records of all your test results (these are legally yours and you have a right to have copies of them), your questions, your research, your notes, etc. all in one place.
He also recommended having an action plan. It’s tough to know what to do when you’re in the middle of a flare-up or feeling awful. Having a firm plan in place that you’ve discussed with your pulmonologist ahead of time will relieve some of the stress and get you the help you need quickly so you can get back to stable as soon as possible. Here is an example of an action plan we use here in BC: https://www2.gov.bc.ca/assets/gov/health/practitioner-pro/bc-guidelines/copd_flare-up_action_plan.pdf
What are your favourite Alpha-1 resources? How are you educating yourself about Alpha-1? Do you have an action plan?