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Your Initial Patient Visit

Welcome to the UMass Chan Medical School Alpha-1 Center.

If you wish to be seen by one of our doctors and have not already done so, please schedule an appointment at the number provided by their name/photo.

When you come to see us for the first time, please be sure to bring with you:

  • Lab reports related to your diagnosis of alpha-1 antitrypsin deficiency
  • Lab reports of liver function tests
  • a CD with copies of your chest x-rays or CAT scans if not available on EPIC (electronic health record)
  • copies of previous pulmonary function tests (PFTs), and
  • copies of notes written by your primary care doctor or pulmonologist.

If you need assistance with obtaining your records, please ask the nurse coordinator for assistance.

To help us provide the best possible care, you may complete this form below and bring it to your first visit to the Alpha-1 Center or be prepared to answer these questions when asked:

Patient Diagnosis

  • Do you have a diagnosis of alpha-1 antitrypsin deficiency?
  • How was the diagnosis made?
  • Do you know your phenotype of genotype test result?

Family history

  • Does anyone in your family have liver or lung disease?  Provide as much detail as possible.  Use the words maternal or paternal to indicate whether relatives or grandparents are on your mother‘s or father’s side respectively.
  • Does anyone else in your family have known Alpha 1?
  • Are you interested in having your family members tested for Alpha-1 or genetically counseled?

Patient history and information

  • Do you have lung or liver disease, both, or don’t know?
  • Summarize your lung or liver disease history beginning with your childhood.  If you had a healthy childhood at what age did you 1st develop any problems, what were these problems?
  • Do you know if you had jaundice as a baby?  Do you know if you had a normal term delivery?
  • Are you a smoker or have you ever smoked cigarettes?  How old were you when you started or stopped and how many packs a day did you or do you smoke?  If you smoke are you interested in a smoking cessation program or quitting?
  • Have you ever been exposed to asbestos as far as you know?  When and where? Do you have other occupational exposures to fumes, dusts or toxic inhalations, eg work in a factory, Naval shipyard, participate in demolition work, work as a fire fighter, welder?
  • Have you ever been exposed to tuberculosis?  Have you ever had a skin test for TB and what were the results?  When were these tests done approximately?
  • Do you know if you have been vaccinated against influenza, pneumococcus, or hepatitis B? Dates of vaccinations?
  • Do you have allergies to any medications; what reactions do you get?
  • What medications are you taking?
  • Have you used inhalers, do you feel that these inhalers help you, which ones help?
  • Are you now or have you ever been on “augmentation therapy” for Alpha-1?
  • Do you now or have you ever worn oxygen?  How many liters per minute and what type of delivery device?
  • Do you know if you have IgA Deficiency?
  • Please list your other known medical problems
  • Have you suffered from depression as a result of alpha-1? Are you interested in meeting with a counselor or psychologist?
  • Do you drink alcohol? How much?
  • Do you take any illicit drugs either inhaled, injected or in pill form?  Please leave blank if you prefer to discuss in person.

Physicians Primary and specialists, please list names and contact information. Please identify and list addresses of those you wish to have copies of your notes.