José Rodriguez wasn't swayed when his grown son and daughter said, "Dad, maybe you shouldn't go on this trip." He had been waiting for this for too long. Rodriguez and his wife took a plane from Atlanta to Barcelona and celebrated their 40th wedding anniversary aboard a ship on a Mediterranean cruise.
"It was wonderful. The trip was 10 days altogether, and I wish it had been longer," Rodriguez says.
Seven years ago, he wasn't sure if he'd even see his 40th wedding anniversary. That's when he learned he had idiopathic pulmonary fibrosis (IPF).
But the disease hasn't stopped Rodriguez yet. If anything, it's motivated him to practice healthier habits. He's made changes that let him keep up the best quality of life he possibly can.
Rodriguez weighed 262 pounds when doctors diagnosed him with IPF in 2008. Over the next 9 months, he lost 67 pounds.
"The weight loss improves everything," he says. On his most recent visit with his pulmonologist, the doctor told Rodriguez that his disease is no longer advancing. He does well on treadmill and breathing tests.
Doctors say shedding some pounds is a top priority for people with IPF who are also obese.
"Patients should do everything in their power, through diet and exercise, to lose weight. With that will come improvement in shortness of breath," says Daniel Dilling, MD, medical director of lung transplantation at Loyola University Medical Center in Chicago.
It can be challenging, though. "You can't exercise like a normal person," Rodriguez says.
He finds it helpful at the gym to use a small tank with oxygen that he keeps in a backpack. He uses it while he walks on the treadmill.
What Can You Do?
Besides trying to stay at a healthy weight, you can follow a number of other doctor-approved tips to live well with IPF:
Get treatment for your cough. It's one of the most common symptoms of IPF. Over-the-counter lozenges or cough syrup can help. Your doctor will also check to see if you need treatment for other conditions, such as acid reflux, that add to the problem.
Avoid symptom triggers. Watch out for things that make you feel worse. Maybe it's secondhand smoke, certain foods or drinks, air travel, high altitudes, or air conditioning. For some people, that full feeling after a meal can make it hard to breathe.
"When your stomach's full, that puts pressure on the lower part of the lungs, and you feel more restricted and more short of breath. Smaller meals throughout the day might be a better option for people who have that symptom," says Amy Hajari Case, MD, director of the Interstitial Lung Disease Program at Piedmont Healthcare in Atlanta.
Exercise. It not only helps you lose weight, it also helps keep your lungs in good working order, maintains your strength, and eases stress.
Rodriguez works out at the gym on his own, but you might prefer a pulmonary rehabilitation program. It can include exercise, disease education, and group therapy.
"The great thing about pulmonary rehabilitation is that the therapists are trained to work with patients with limited lung function," Case says.
While shortness of breath can make exercise tough, if you stop doing it, you'll lose muscle strength.
"Therapists in pulmonary rehab programs tailor exercise to the individual to keep them doing what they can do for as long as they can," she says.
Eat healthy. You might not be able to burn as many calories through exercise as other people can, so it's especially important to watch how many you take in. But weight loss isn't the only reason to eat a healthy diet. It keeps your body strong to help you live with your condition.
"You don't want to make your condition worse with other health problems," Case says. "You want to maintain your body as well as possible."
Rodriguez gave up high-calorie sodas and beer. It helped him lose weight and also helps him keep coughing to a minimum. "Thick liquids, and the syrup in sodas especially, would make me cough," he says.
A healthy diet includes fruits and veggies, whole grains, low-fat or fat-free dairy and protein, nuts, seeds, beans, and peas. It's also low in salt, added sugar, saturated and trans fats, and refined grains, such as white bread and white rice.
If you need help planning your meals, your doctor can refer you to a dietitian. Pulmonary rehab programs may include nutrition education as well.
Quit smoking. Cigarettes make coughing and shortness of breath worse. Ask your doctor for help if you can't break the habit on your own.
Get plenty of rest. This preserves your strength and lowers stress. That makes breathing easier.
Use assistive devices when you need them. As your disease advances, you may sometimes need oxygen, a wheelchair, or a scooter. That doesn't mean you have to use them all the time.
"I encourage people to do as much as they can on their own for as long as they can, and to only use those devices when they need to get out and about for a longer period of time," Case says. "You don't want to limit yourself because walking is too difficult."
Get support. It's important to get the emotional backing you need from family and friends. You can also talk to others who are going through the same things you are.
"When you go to the support group, you know everyone's in the same boat," Rodriguez says. "They hear what you're saying and tell you what they've tried and what has worked for them."
The Pulmonary Fibrosis Foundation offers an online directory of support groups. If you can't find one in your area, many people join them through social media.
Pulmonologists and people with IPF say it's important to stay upbeat. Exercise, diet, and tapping into a social support network can give you an emotional boost. And that can motivate you to take good care of yourself.
"It's been so important for my family and me to keep a positive attitude," Rodriguez says. "Our goal has been to take it one day at a time, learn as much as we can, and work with the doctor to set realistic goals. It is a day-to-day challenge."