Friday, May 2, 2014

APF- Preparing for your appointment worksheet

American Porphyria Foundation         

Preparing for Your Appointment
We want to be sure all of your questions and concerns have been addressed and you feel comfortable with the answers.  Use this form to prepare for your visits and bring it with you to your appointment.  Please let your Doctor or nurse know if you need to speak with someone else from your team before you leave for the day.
Appointment Date and Time:__________________________ Providers Name:_____________________
Building/Location:______________________________ Clinic/Dept:______________________________
Questions for my Health Care Team
1.       Question:_____________________________________________________________________


2.       Question:_____________________________________________________________________


3.       Question:_____________________________________________________________________


4.       Question:_____________________________________________________________________

Other items to Discuss with my Health Care Team (such as pain, side effects, emotional concerns, additional services needed to help manage my Porphyria care at home)
Medication refills I need. __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Is there anyone else I need to Talk to About My Concerns? (such as a dietitian, oncology, hematology, specialist)

Helpful Questions to Ask
v  What type of Porphyria do I have?

v  What treatment options do I have?

v  What are the side effects of the treatment?

v  Do I have my Porphyria Emergency Kit with me?

v  Do I have my Safe /Unsafe Drug lists? {Acute Type Only)

v  How long is my treatment, test or surgery?

v  Do I need to stop or adjust any of my medications before my treatment, procedure or surgery?

v  Will I need to stay in the hospital or infusion clinic?

v  What will the outcome of my treatment typically be?

v  What are Clinical trials? Should I consider a clinical trial?

v  Where can I find more information?

For more information please visit:

The American Porphyria Foundation
4900 Woodway, Suite 780
Houston, TX 77056-1837
Toll free: 866-APF-3635
Telephone: 713-266-9617
Fax: 713-840-9552                                     
Patient Advisory Board ALC 8/2013
"Remember....Research is the key to your cure!"

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