Once you understand that there may not be a cure for idiopathic pulmonary fibrosis (IPF), it's time to develop a plan for your future. Understand that your symptoms may get worse over time, and you may not be able to do many of the things that you did before you had IPF.

Change your life

• Keep notes.
  How often do you leave a doctors office and you think: "I should have asked him/her about......" By keeping notes or walking in with prepared questions you will be a better partner for your doctor while dealing with IPF.

• If you're still smoking, QUIT. If you can't stop by yourself or with the help of family and friends - try harder. Keep in mind that very often the relationship between you and your cigarette is having something in your fingers - use your keys from now on or anything else. If you can't stop smoking, talk to your doctor. There are programs and products that can help you quit.  Family, friends, and co-workers should not smoke in front of you or in your home, car, or workplace and you should avoid any other situation where the air quality is low or the number of particles (dust etc.) in the air is high. Remember the little tip - Make sure you have something in your hands all the time, something like a key chain, worry beads, etc.

• Staying active and exercising will help you maintain your strength and lung function and reduce stress. If you're not a member of a gym then join one or even better join a pulmonary rehab program. Don't be scared because everybody is fitter when you start exercising. You will become stronger and fitter but only if you follow through with it. Ask one of the instructors to create a plan for you and make that plan your second bible. If you can't, try moderate exercise, such as walking, riding a bike, using an elliptical machine, and some weights. It benefits everyone but remember that if you can get a lung transplant you need to teach your body to be strong so it can recover quickly after the operation. (Ask your doctor if you need oxygen while exercising) Staying active can help with both your physical and mental health. Finding a Pulmonary Rehab facility near you is simple. Just go to the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR). http://www.aacvpr.org/Resources 

• Stop drinking alcohol. Once your doctor prescribes medications you have to understand that alcohol will interact with many medications and will influence their effectiveness.

• Diet. Ask your doctor if you need to see a dietitian and he/she'll probably agree with you. Your dietitian will put together a healthy diet including a variety of fruits, vegetables, whole grains, lean meats, poultry, fish, beans, and milk products. A education in the dangers of too much saturated fat, trans fat, cholesterol, sodium (salt), and added sugar will be part of the program. Eating smaller, more frequent meals may help you to breathe better by relieving stomach fullness. Keep in mind that it doesn't mean that you can’t have an occasional goody;  it means that the goodies should be  limited and, unlike many people in society, not a large part of our diet.  Keep in mind that if you are overweight, the less weight you have to carry around the less stress you put on your lungs and ultimately on your heart. (Keep watching shows like NBC's "The Biggest Loser") 

• Sleep & Rest. Getting a good night’s sleep every night and plenty of rest during the day can increase your energy. It will help you deal with physician pressure and the stress. If you have trouble sleeping discuss it with your doctor. A sleep study can be an answer or sometimes a sleeping pill can do wonders. 

• Maintain a positive attitude. It may be the most important thing you have to do.  You should recognize that it’s also the hardest thing to do. Think before you speak and act. Find your dream spot and practice relaxation techniques.  Relaxing your mind and your body will help you breathe easier, relieve tension and avoid overworking muscles.



• Stress. Too much stress can have a negative effect on your wellbeing. Where possible try to avoid stressful situations. (See more under stress)
  

• Travel. Discuss with your doctor situations that can make your symptoms worse, such as traveling by air. Consider that living at or traveling to high altitudes (ski areas) where the air is thin and the amount of oxygen in the air is low may be not the wisest thing to do. If you have to travel, there are plenty of resources to help you during your travel. If you want to you can take a HAST - High Altitude Similation Test. 

• Heating & Air.  Review your maintenance procedures on your air conditioning and heating systems.  Timely replacement of filters and upgrading to a better filter is absolutely essential. When you're renewing your system get online and research the websites to understand the best systems for you. Please understand that your days of enjoying an open fire in the fireplace may be over. 

• Finger Pulse Oximeter. This small measuring tool is a reasonably dependable and easy way to check your Oxygen level & heart rate in a few seconds and can be found at every pharmacy or at websites like Amazon.com, etc. However, it does not replace the guidance of your doctor!!
  

Ongoing Care

When you have IPF, you will need ongoing medical care. Find treatment by a pulmonologist who specializes in IPF or interstitial lung diseases. Or visit an IPF specialist at one of the major IPF centers.

A treatment plan may relieve your symptoms, slow or stop the fibrosis (scarring) but it will also give you new hope. Strictly follow your treatment plan. For example:

• Take your medicines as your doctor prescribes
• Make any changes in diet or exercise that your doctor recommends
• Keep all of your appointments with your doctor
• Enroll in pulmonary rehabilitation (rehab)
• Learn about oxygen therapy

Social Security Disability Compassionate Allowances

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, we considered which conditions are most likely to meet our current definition of disability.

Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.

On July 14, 2011, Commissioner Astrue held an event at the Dirksen Senate Office Building, room 106, at 10:00 a.m. in Washington D.C. to announce the addition of 12 new conditions to the Compassionate Allowances list of conditions. This addition brings the number of Compassionate Allowances conditions to 100.

(source: - www.socialsecurity.gov/compassionateallowances )

Complete List of Compassionate Allowances Conditions - (Please look for Idiopathic Pulmonary Fibrosis)

Living with Advanced Lung Disease: A Guide for Family Caregivers :

http://medicaring.org/educate/download/copdbookfinal.pdf 



HOPE

“Never let go of hope. One day you will see that it all has finally come together. What you have always wished for has finally come to be. You will look back and laugh at what has passed and you will ask yourself... 'How did I get through all of that?”

BELIEVE 

“Believe and act as if it were impossible to fail.”