Living with Pulmonary Fibrosis (sometimes): Finding strength

Francko, I share many of your feelings. This PF is a challenging diagnosis to accept and live with...as you say some days are better than others. When my Dad first found out he had Alzheimer's disease he said "we all have to die of something". What courage and acceptance he had! Asking for divine help I want to focus on my blessings, have my Dad's courage and be present to life around me each day...It's still hard.

Thanks for starting this discussion, Harry (Francko). I'd like to ask @alancady @rayhastings @tula @kturchin @1jonwilcox and @oliver22 to also join you here along with Penlee to talk frankly about the realities of living with pulmonary fibrosis. The things we might not be able to share with family and friends, and also about how this disease affects those around us.

colleen do you know how many people in the U.S. have pf at this time.Did anyone ever try legal medical marijuana for pf and if so did it help,and what can help with the morning cough i have this every morning and i have large amounts of mucus that i cough up and you think it will never stop but the rest of the day i cough very little. I wonder were all that mucus comes from in the morning does anyone know what med. will help. FRANCKO

According to Healthline - IPF: Statistics, Facts, and You https://www.healthline.com/health/managing-idiopathic-pulmonary-fibrosis/ipf-facts
"IPF is considered a rare, sporadic disease. According to the National Institutes of Health, about 100,000 people in the United States have IPF, and approximately 30,000 to 40,000 new cases are found each year. Worldwide, IPF affects 13 to 20 out of every 100,000 people."

i have same problem. the reason you have the coughing is your lungs are trying to clear the muus from you lungs. find that over the counter cough medicine works pretty good. are you on oxygen? if yes, that can dry you out .

I was recently diagnosed with interstitial lung disease after 2 hospital stays with pneumonia only 1 month apart and an initial diagnosis of heart failure and COPD. I am only 49 years old and my health is failing quickly. I have a lot of difficulty just breathing and getting through day to day.

ppeschke....... first thing take as deep of breath as you can, let it out slowly, repeat three times..... feel more relaxed? Now listen, if you smoke QUIT.... I smoked for over 40 years don't tell me it is hard... been there done that. The time is passed for trying, thinking, or soon... the time is NOW. There has been damage done to your lungs that short of lung replacement can't be fixed, but you can slow it down. Keeping even or slowing the progression down is winning. Seeing a pulmonologist that specializes in COPD would be a good start, don't trust this to just a GP. We are here to help and listen.

The first thing you need to do is to see a pulmonary specialist. you need to get an accurate diagnosis. You may need to start using additional oxygen. let us know how you are doing.

Hi @ppeschke, welcome to Connect. How frightening this all must be for you. Have you been given oxygen to help the breathing? What treatment or next steps have been suggested?

Rather than switching to Oxygen, you should be using a C-Pap machine with a humidifier. Also, just before sleeping breath in as much as you can, hold it as long as you can and ley out thru pursed lips slowly 5 times. This will help you go to sleep and have a more restful sleep. You should also be using an inhalation device 10 times per day. I have done this and my lung fibers have disappeared. A miraculous case, I admit. But, if I did not do all that I doubt the results would be the same. BTW my lung MD advised me that I should expect a shortened lifespan and I am now 2 years past the final date. What do they know?