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Being diagnosed with idiopathic pulmonary fibrosis (IPF) will affect your life in many ways. While we deal with the physical progression of the disease and available treatments on this site, it is also important to discuss its other effects.
Based upon interviews with current Simmons Center patients, we've put together the following frequently asked questions. It is our hope that you will help us add to this section, passing on the lessons you've learned to others.
The patient experiences detailed below may not be representative of all similar cases.
In the words of one patient, there is "emotional fallout" after an IPF diagnosis. She states: "Initially, I was in shock. I was depressed. I couldn't believe they were telling me what they were telling me, thinking I was just going to die very soon and very scared of death."
There may be other emotions mixed in with your depression; jealousy of those who are healthy; anger at God or fate; fear of an unknown future. The first thing you should know is that all of these feelings are perfectly normal.
One woman offers the following advice: "Allow yourself to grieve, allow yourself to be angry and to feel all those emotions. Find out as much as you can about the disease. Take control. You have to know as much as, if not more, than your doctor. Knowledge is power."
Self-education is a common theme among IPF patients. Another patient said, "I needed to find out information when I was diagnosed. I spent my life in the library."
Social support systems also play an important role in dealing with an IPF diagnosis.
"Get a doctor that you have a good rapport with," one patient advises. "Get in a support group. Talk with your friends and family about it. Get counseling if you need it and if you do, try to find a counselor who specializes in chronic illness. Pray. And try to live your normal life. I don't think about this disease every day. If I did, it would drive me crazy. At first you're going to do that. Just talking to people helps. It makes you feel like you're not isolated."
If you can find a support group in your area, it would be a good idea to give it a try. The IPF support group at the University of Pittsburgh has held meetings on subjects as diverse as oxygen therapy, medications, and an introduction to IPF. These meetings present a perfect opportunity to network with others who are dealing with the same issues, as well as a chance for you to educate yourself with the firsthand testimony of others.
This is one of the greatest fears of IPF patients. We have all seen people carting along oxygen tanks with tubes hooked up to their noses, and it is frightening to think that we may be required to do that as well.
One man says, "I was afraid I would become dependent on oxygen and I was afraid of how I would look in public. But I told the doctor that I needed to go on it. I had a very active life because I was in college and I didn't want to depend on anybody, and the oxygen freed me up to do the things I needed to do."
What is remarkable is how the benefits of oxygen therapy so greatly outweigh the inconveniences or fears of social stigmatization. When asked how he overcame his fears, this patient answered, "I just learned to deal with it. After a while, I just realized that nobody was looking. The big thing was going to class for the first time, and everybody was staring. But I stopped caring because I felt so much better on oxygen. It was a very freeing experience getting out of the house. I recognized that without oxygen I was hurting my other organs, and I was stagnating in the house."
Especially for the active person, IPF can seem like a devastating illness, and there is no doubt that it will change your life significantly. Of course, exercise depends on a variety of factors including how advanced the disease is, as well as your age and overall health. You doctor will evaluate your condition and make appropriate recommendations.
While preparing for a lung transplant, one patient "worked out three days a week, especially my upper body and on the treadmill. I would use oxygen (a higher dose) with moisture injected in it. I'd take K-Y® Jelly on a Q-Tip® and put it in my nostrils to keep them from drying out. I also park my car as far away as I can in a parking lot."
Another patient says, "I am not exercising, although I should be doing it. I am not sitting on the couch doing nothing. I am a nurse and still able to work (on my feet all day) and can take care of my five-year old little wild boy."
Along with your doctor, you can design a regimen that will keep you active and fit, which will help to minimize the effects of IPF.
Your lung disease has made you more short of breath upon exertion and, consequently, you have limited your activity level. Although this may diminish the stress of experiencing shortness of breath, this inactivity creates a vicious cycle with many adverse effects. Inactivity leads to further self-restrictions to participate in physical work. Almost every part of your body is adversely effected by inactivity.
Participating in an exercise program may increase your sense of well-being. Many research articles have documented that patients feel more in control of their bodies and environment. They report experiencing less depression and anxiety upon exertion. Patients also feel more confident in dealing with the community and resume many of their normal relationships with family members and friends.
Your doctor will evaluate your diet and make recommendations according to your overall condition. For instance, if you are overweight, your diet may be changed dramatically. If, however, you are in the very early stages of IPF (and otherwise healthy), there may be little modification to your diet.
One patient, while not overweight, found that the large meals he was accustomed to eating would put too much pressure on his diaphragm, causing shortness of breath and overall discomfort. "I had to eat lots of small meals. If I ate too much, I had trouble breathing. I ate whatever I wanted, just in smaller portions," he says.
Another patient found herself gaining weight as a side effect of prednisone (corticosteroid) treatment. She modified her diet in order to counteract that effect.
This is one of the most difficult questions you will face. As medical science progresses, and treatments become more effective, people are living longer, more normal lives with IPF. However, since there is no cure for IPF, premature death is a fact of life. How you approach this is in large part based on how you live your life, what you believe, and how you think about your future.
Many IPF patients make the conscious decision to live their life as normally as possible in spite of their illness. One woman has an old saying by her grandmother posted on her refrigerator. It reads, "You have it, don't let it get you." She goes on to explain, "I have close friends and family and faith in God, and have so many things to be thankful for. I feel like I've been blessed. IPF is something that is a part of me, but I just try to live my normal life. The main thing that keeps me going is my faith in God."
While religion and faith can be great comfort, others seek solace in family and friends, or in their careers. One man explains, "I always had a focus of what I wanted to do in the future. I knew once I was well exactly what I wanted. I knew I wanted a career, a wife, a child, and I got them."
He also tried to find laughter where he could. "I watched tons of comedies on video every day. It kept my spirits up."
Finally, he embraced the possibility of dying, and found it to be liberating. "I needed to embrace it. I didn't fear it. In the understanding of one's own mortality, the greatest amount of beauty is found in every object one sees. By embracing death, you are enhancing life. Trying to hide from the possibility of death would have been the end of me. A person who is ill can become so much more than they were by embracing the finality of life. If you make it through, you are so much better for it."
As terrible as it can be, IPF does not have to rule your life. Whatever you are going through physically and psychologically, you can still take joy in family and friends, seek laughter and love, make plans for the future, and live every day to the fullest.