LIFE MANAGEMENT WITH IPF I have IPF, NOW WHAT?

Jennifer Hayes, RN, BSN Carolyn Spada, RN, BSN Interstitial Lung Disease Nurse Coordinators University of Washington Medical Center Seattle, Washington

Physical & Emotional Health Being a “Personal Health Advocate” Managing Stress, Anxiety, and Depression Diet and Nutrition Energy Conservation….AND exercise? Support Systems

Being a “Personal Health Advocate” Ask questions Seek Options, do research, be proactive Find a physician familiar with IPF Know your insurance system* Prepare realistically but keep HOPE

What do I need to know about my Insurance? Find out how the system works and how your primary care doctor works with it Find out if your Primary Care Doctor has to approve everything or if your specialist can order/ request tests Find out if you have co-pays, for what, for how much Find out who you contact for different information and what their number is (take & write down names) Do as much “leg work” as you can for your doctors office to make it less time consuming for them and thus faster for you!

“I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do the something that I can do.” --Edward Everett

Managing Stress, Anxiety, and Depression Recognize the need to go through the grieving process Lifestyle changes Sleep—important to mind and body The role of humor When to seek medication Positive Mental Attitude! (The hardest one)

Kubler-Ross Stages of Grief 1. Denial 2. Anger 3. Bargaining 4. Depression 5. Acceptance

Lifestyle Changes Incorporate Relaxation Learn to manage your panic If you haven’t already—STOP SMOKING Take your medications as directed Be diligent about your follow-up care What else are you doing that’s unhealthy or unwise?

Sleep Up to 62% of people have trouble sleeping Depression can be linked to lack of sleep Needed to rejuvenate the system What to do? Rule out sleep disorders with your physician Use routine Take naps Occasional medicine as a last resort Make it a priority

HEY, WHERE’S MY MOUSE?!

“ Laughter produces beneficial physiological results. It exercises the lungs and stimulates the circulatory system. Hearty laughter causes full action of the diaphragm…The whole cardiovascular system benefits from robust laughter because the deep respiration that accompanies it increases the oxygen in the blood.” “The Laughter Prescription” by Dr. Laurence J. Peter

Medication Use when stress, anxiety and depression become unbearable Use if having suicidal thoughts (also seek other professional help) Use under physicians supervision Advocate changing if it does not seem to be working

POSITIVE MENTAL ATTITUDE I CAN I WILL IT’S POSSIBLE

The Role of Diet and Nutrition What DOES your body need? Smaller, more frequent meals Less Weight = Less breathing effort Reflux in IPF Balance Supplements—yes or no? Know body effects Consult with pharmacist Consult with physician

Energy Conservation…AND Exercise? Listen to your body BUT… Activities of Daily Living Exercise Oxygen?

Support Systems Seek family and friends (use but not abuse) Seek others who share your disease Seek professional help if needed

PRESCRIPTIONS FOR EMOTIONAL HEALTH from “The Laughter Prescription” by Dr. Laurence J. Peter Deal with one problem at a time & do one thing at a time Do the best you can and then don’t worry about it Be assertive & express your feelings honestly Treat others with the respect you wish for yourself Be aware of your own needs rather than those inspired by others

PRESCRIPTIONS FOR EMOTIONAL HEALTH from “The Laughter Prescription” by Dr. Laurence J. Peter Do not view your life as closed in, but realize there are always alternatives Choose to be well and happy Remove yourself from your problems Adopt the comic perspective so you can see your problems objectively and laugh at them Live in the present