LIFE MANAGEMENT WITH IPF

I have IPF, NOW WHAT?

Jennifer Hayes, RN, BSNCarolyn 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 notrefuse 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. Denial2. Anger3. Bargaining4. Depression5. 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