A visit with your doctor is an important opportunity to share information about how you are doing and also have your questions answered. In a typical follow up doctor’s visit, you may only get 10 minutes with the physician so it is crucial to have a game plan to maximize the yield from that short period of time. Your initial consultation is generally 30 to 45 minutes with the physician but the doctor is busy gathering information from you.
Here are some tips that my patients and colleagues have shared with me over the years.
Your initial consultation for possible Idiopathic Pulmonary Fibrosis
1. Track down your own X-rays and CT scans and bring copies to your visit. This is of paramount importance. Your doctor’s office staff will try and obtain these studies but all they can do is request the studies from the imaging centers and hospitals. Sometimes the discs don’t show up in a timely fashion and this delays your care.
2. Your doctor will want to know about your past medical history. Many patients make a list of their other medical problems and dates of surgeries. This can be a time saver for your doctor, allowing more time to be spent on discussing your lung disease.
3. Make a list of any major health problems that your first-degree family members have (children, siblings, parents).
4. Your doctor will want to know about how your symptoms evolved over time. Spend a few minutes before the visit and reflect on when you started having which symptoms and how they have changed. Are there things that make you feel better or worse?
5. Do your homework. If you know that you are seeing a pulmonologist to evaluate you for pulmonary fibrosis, then do a bit of reading in advance of the visit. No one expects you to be an expert. However, understanding some basics about pulmonary fibrosis such as which tests might be performed and the two drugs that are approved will help.
6. Don’t over prepare for the visit. Spending a huge amount of time reading about your lung disease in advance of the initial consultation will be overwhelming. You may not even have the disease that you assumed you have.
7. Always have your doctor write the plan on paper so that you can review the key items after you leave.
1. What does my HRCT scan show? Are the changes typical of IPF or atypical?
2. What do my breathing tests show? Are they typical of IPF or atypical
3. Do I need a lung biopsy?
a. Bronchoscopy has a very limited role in patients suspected of having IPF
b. Surgical lung biopsy (VATS) is the test of choice if the imaging is not characteristic
4. Which treatments would you advise and why?
5. What tests will be performed to follow my progress?
Things to Avoid
1. Stay focused and on topic. Avoid long stories that don’t make a clear relevant point.
2. Don’t refuse or eliminate specific tests or treatment options before listening to your doctor. For example, many patients start their visit with me by announcing that they will not wear oxygen under any circumstances. This is like taking your car to the mechanic and telling him not to put any new oil in the engine regardless of how low the oil level is. Keep an open mind. Be honest about your fears and anxieties.
3. Avoid coffee shop medicine. “My friend takes a multivitamin from Scandinavia that has cured her lung disease”. Each patient is an individual. The celebrity TV Doctor does not know best. If it is too good to be true, then it is a scam.
Follow Up Visits
1. Do your homework. If your doctor makes a plan that seems sensible then implement the plan. Returning for your follow up visit and not having made the changes will certainly result in no progress.
2. Make a list of questions for your doctor. Too often patients remember that they did not ask a burning question while they are checking out at the front.
3. Always have your doctor write down the plan on a piece of paper.
4. Ask for copies of your test results. You should keep your own file that includes results from major tests.
5. If you have had any imaging tests done prior to the visit, bring the images on a disc.