Patient Advocacy

Being Involved in Your Own Health Care

Doctor Visit

Some doctors will give us as much time as we need, but many are on a schedule and we need to be mindful of that. For what they are worth, here are a few suggestions regarding meetings with your doctor.

  • Always take your organized medical binder. Place it on the counter and let them know it's available for reference.

  • Don't ask "do you think" questions such as "do you think this will help me?" "Do you think I'll feel better if and when?"

  • Keep your questions medical, but keep in mind that their job is not to give you a medical school education. You can go to the Internet for general, factual, medical information. Keep your questions pertinent to your situation such as, "How is my cardiac output?"

  • Don't hand the doctor anything to read until your discussion is over. If you hand your doctor a piece of paper, he/she will start reading, and his/her focus will no longer be on you and your questions.

  • Prepare your questions ahead of time. Have them in writing for your reference. Stay on topic

Medical Records

  • It's a great help to your doctors to have a complete set of test results available during office visits. This saves a lot of time and if your papers are well organized, gives the doctor a lot of good information. Organize your papers in a loose leaf binder under subject tabs such as: PFTs, Scans (MRI, CT), X-Rays, Lab Tests, ABG's etc. File all tests results in date order with the most recent on top. Your doctor can work backward to see trends. Include a page listing all your current medications, doses and time of day you take them. You might include a section on this sheet to show medications you took previously and the date you started and stopped taking the med. Sometimes doctors want to know if you've tried this or that med in the past. Include vitamins, minerals and any other supplements you take. If your doctor wants copies of anything, he/she can open up the binder and remove a page easily. Some people put everything in plastic protector sheets, but since the pages don't get handled that much, this really is not necessary.

  • My doctors have lost films so I'm inclined to ask for them. Sometimes they will sell you a copy and other times you can "borrow" the film. When I borrow my film, I keep it forever. Some doctors want to see films and others want to see write-ups. I believe the films are safer with me than in any institution where misfiling is possible. Once it's lost, you've lost a bit of your medical history that you cannot get back.

  • Get copies of everything. Even if you are working within one medical institution, ask for copies of everything pertaining to your own health. This includes lab test results, X-Ray, CT scan and MRI reports, PFT test results and so on. Get everything you can.

Wallet Information

  • I typed up a fact sheet about my medical situation and placed it in my wallet. I understand that Medic Alert bracelets may be very helpful, but I'm pretty satisfied with my wallet information. I've attached my medical insurance cards to the folded up page so that anyone needing to treat me, will find it. It lists my diseases and conditions, my current medications, my doctors names and phone numbers, my husband's name and work phone number and in oversized, bold letters a warning about administering anesthesia to me without constant monitoring. As some of you must know, general anesthetic is very dangerous to PH'ers especially if we're not monitored very closely. Can't hurt.

C Switzer

This material was originally written for PHCentral’s Tips & Tricks section. Find more good tips for living in TIPS & Tricks.

Other Resources on PHCentral

Living Wills: One Patient's Experience
by Sherry Okonski - Contributor

Mutterings and Musings on Being a Patient
By Cheryl Switzer

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