Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, has got to be scary. It’s a progressive disease and the only “cure” is a successful lung transplant (which obviously carries severe risks and for which many patients are ineligible). But those who have been diagnosed shouldn’t lose hope.
It is possible to live many productive years with IPF. It’s not a matter of sitting idly by, hoping for the best; there are actually things you can do to affect your outcome. So if you want to take IPF seriously, keep on reading.
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- See a specialist
You know that saying, “a jack of all trades but a master of none”? That’s basically what a general practitioner is. They’ve got a wide-ranging knowledge that helps them recognize a multitude of conditions and makes them a good first line of defense. But when you have a serious condition like IPF, don’t you want it monitored and treated by someone who dedicates all of their time to that one thing? A pulmonologist deals specifically with lung conditions and should be more up-to-date on research, existing treatments, and clinical trials. When interviewing pulmonologists, make sure you ask them about their past experience specifically regarding IPF.
2. Monitor your disease
I check the strength of my wireless signal multiple times throughout the day. I keep an eye on the fuel gauge in my car because once, in high school, I ran out of gas and it was like, the most humiliating thing ever. So why shouldn’t somebody with IPF keep track of the severity of their symptoms? File away your test results so you can compare them (or better yet, start a spreadsheet or a graph and plot them so you can easily spot trends). Also, if you keep a journal you can write down what you experience on a daily basis, how bad specific symptoms are, when they happen and how long they last, and what you were doing around the time of onset. Do that and you’re giving yourself (and your doctor) even more power to spot patterns and recognize whether your disease is remaining stable or progressing. If it’s progressing, it might be time to reevaluate your treatment plan or adjust your lifestyle to improve day-to-day function. Also, a journal is a great place to jot down questions that occur to you throughout the day, so that you can remember to ask your doctor about them.
3. Create a successful environment.
If you’re a smoker, stop it. Seriously, stop it. Eat a balanced diet (see a nutritionist if you have to). Getting the right nutrients can help you maintain energy, but keep in mind that your dietary needs may change throughout the course of the disease so it’s important to reevaluate this. Make yourself get some exercise so your body can be as efficient a machine as possible. And last but certainly not least, make sure you’re surrounded by supportive people. That includes your healthcare team (including a therapist if you want one), family, friends, and the IPF community. Attitude is everything, right? So make sure you have people who help keep you positive and don’t bring you down.
