June 6, 2018 at 5:18 am #12916Charlene MarshallKeymaster
A recent study found that around half of the idiopathic pulmonary fibrosis patients surveyed had not been fully informed about their treatment by their health care team, yet 93 percent of respondents said they wanted to learn about treatments and therapies directly from their doctor rather than other sources.
Understanding how medications work and what the treatment options are for IPF gives those living with the disease some autonomy over their health, arming them with information to make informed decisions about their future treatment. But how can IPF patients get more from their doctors’ appointments?
With help from fightipf.co.uk, we’ve come up with a list of tips to help you learn more about your treatment, including what questions you should be asking your doctor.
Find out Your Options
Ask your doctor to fully explain the various treatment options available to you. It will help if you do some homework beforehand and investigate the different therapies and medications available so you can determine with the help of your doctor, which one is right for you.
Take Someone for Support
Take a family member or trusted friend with you to your doctors’ appointments. You will be able to discuss the pros and cons of various therapies with them and they will be able to help you recall all the information the doctor shared about your options.
Share Your Goals
Explain to your doctor what your short- and long-term goals are so that they can determine the best strategy for your treatment and help you achieve your goals.
Bear in mind that as your condition progresses, your goals may change or you may have to lessen your expectations.
Questions to Ask
It’s important to understand all the medications you’re taking and what they do. If you have symptoms that you feel are not being addressed then you should enquire about treating those, too.
Here are some questions you may want to consider asking your doctor:
What medications and therapies am I currently taking?
What do these medications do?
What are the possible side effects of these medications?
Are there any other therapies or treatments I might benefit from?
What things can I do to help me achieve my goals?
What can I do to limit the impact of IPF on my life?
Are there any other helpful questions you ask your doctor on a regular basis? How else do you optimize doctors appointments pertaining to your diagnosis of IPF/PF?
June 7, 2018 at 10:02 am #12949Sheila BlanchardParticipant
Hi Charlene, I go to my pulmonary Dr.one week from today,and hopefully your questions to ask will help me. When I see her I always feel like I am complaining.I try to be (brain fog)smiling And bright but don’t feel that way. I put on my makeup and fix my hair nice and am told how good I look and again don’t feel that way. We will see ,I should get the results of my ekg and sleep apnea tests thanks again for your help.
June 7, 2018 at 1:21 pm #12959Charlene MarshallKeymaster
Thanks for reading and as always, for contributing your valuable experiences to this forum site. Goodluck at your pulmonary doctor next week, and I am glad to hear that the column above might help guide your appointment a bit. I often take a look at these questions before my appointments and “tweak” them a bit based on my experience and needs at the time of my appointment.
Try to be a bit more gentle with yourself when it comes to feeling like you’re complaining to your doctor. I think it is important that they see our true needs, even if that is complaints and frustration as those are very real things associated with PF. I suspect there are many more patients who are negative or complaining than yourself, and even those patients I believe would be entitled. Living with PF just stinks all around!
Hoping the results of your EKG and sleep apnea tests are good, or what you expect. Wishing you the very best at your upcoming appointment.
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