A memeber of the family suffering from pulmonary fibrosis, please help!!?

a member of my family is suffering from pulmonary fibrosis, he suffers from coughing none stop, a loss of appettite, loss of weight and he now has oxygen machines to use throughout the day. The person has really changed and I really want to help him (its bothering him and the family who are worried about him). Please provide answers if you have been suffering from it or if you know about it, by providing me information about how to treat the person or what helps the person to feel better and to suffer much less. I would greatly apperciate it !

I have pulmonary fibrosis so I know what your loved one is going through. Perhaps I can help out a little. First, he is not alone. There are over 200,000 of us in the United States who suffer from this, and estimates of 15,000,000 worldwide. Pulmonary fibrosis kills about 50,000 people a year in the US alone. Make no mistake, this is a terminal disease and it will kill your loved one. That's the bad news. The good news is there are things you can do to help.

I was diagnosed in March of 2003 and given less than 18 months to live. I was placed on high doses of steroids and ended up gaining 65 pounds and using supplemental oxygen 24 hours per day. I lived in a large city with horrible air pollution and an elevation of 5,000 feet above sea level. When I became totally disabled and unable to work, my wife and I sold everything and moved to the Oregon Coast.

As you can see, I have exceeded my doctors' estimates of an 18 month life span. I am now off prednisone, lost 35 pounds, and use supplemental oxygen only when exercising and sleeping. I sleep with a CPAP and 3 liters of oxygen at night and when I nap. I walk 2 miles every day (I'm no speed demon, but who cares). I have gone to pulmonary rehab and learned to breathe more efficiently with the lungs I have left.

Most importantly, I stopped worrying about tomorrow and what might happen, and now am only concerned about today. My wife and daughters are my support group. They don't allow me to feel sorry for myself. They allow me a moment or two for a pity party, and then they kick me in the *** and I get up and get going. I have taken this opportuntiy to spend quality time with them and I now paint, write music, and have even written a book. Not bad for a guy who was supposed to be dead over 2 1/2 years ago.

It sounds like your loved one received this diagnosis recently. Give him a little time to accept his fate. It is a bit of a shock to the system. Once he reaches the acceptance phase, he can forget about dying and get on with living. That's what is important. He needs to keep busy and not feel sorry for himself. He's dying. Big deal, so is every other human on the face of the planet. The only difference is he has an idea of what is going to kill him and a little bit of an idea of how long it is going to take. All of us were terminal at birth - we just don't know when or how we are going to die. He needs to focus on taking care of himself. Go to pulmonary rehab. If he lives in a city with poor air quality, move somewhere where the air is clean. He needs to remain active. If he needs the oxygen to remain ambulatory, use it. Get a small O2 bottle with a conserving device and get back out there. Take a diuretic to help with the edema. Stay away from steroids (the side effects are worse than what is killing him).

Finally, surround him with people who love him, but won't feel sorry for him or baby him. Hold his hand when the pain gets too much to handle, cry with him when he sheds a tear, but don't pity him. Admire him for his courage and love him like this is the last time you will ever see him. He will reciprocate and hopefully regain his zest for life. I treat every day as a gift. I don't waste any time and I don't worry about trivial things anymore. I make sure the last three words my wife hears every night before she goes to sleep are "I love you." I do that just in case I don't wake up. I also make sure the first three words she hears every day are "I love you." I do that in case I don't make it to the night.

I apologize for rambling. This is a bum deal and it isn't a great way to die. As a matter of fact, it is a really lousy way to die, but it does have its advantages. For more info, visit these sites:

www.pulmonaryfibrosis.org
www.coalitionforpf.org

Hang in there. The old person will return after accepting his fate. In the meantime, just love him like you always have. He's still the same person, he just has some limitaitions now. Good luck to all of you. You are not alone.

ok, assuming pulmonary fibrosis is the correct diagnosis, then the family member has an irreversible lung condition that will gradually worsen, cause lung infections, increases in oxygen use, make them irritable, tired, cranky, and ultimately will kill him.

there is no nice way to tell you this and you are seeing it already, you are just not willing to accept whats happening.

now as for helping him. just be a good friend. be there to help as much as your conscience will allow. dont nag, warn, or criticize, just let them live out life as best they can. they know they hate it.

Hi Jessica,

I'm so sorry--I know how difficult that can be.

How old is he, and when was he diagnosed? I might be able to help figure something out, but I'd need to know more about him.

You're so sweet to care enough to post here.

Why don't you email me? I think I've enabled that on my profile. We'll work on this together!:)

needs bloodwork for tb,pneumonia,sed rate,cbc,sputum culture consider environmental toxins as factors,like peeling paint,mold from dirt crawl space,cellulose from rotten wood particulate matter in air,chemical exposure to paints,varnishes,laquer thinners,airborn matter from incinerators or factories close by.production of phlegm sometimes caused by foods,,on.two ,or more,depending on results of elimination diet,,,,,guaifennesein cough syrup may help too,,,guai without chems & preservatives,

Unfortunately Pulmonary fibrosis is a chronic condition that there is no "cure" for. It will get worse as time goes by and sadly will most likely be the cause of death for this person with in 3 to 7 years. All that can really be done is to have this person begin to live a more healthy life style, this will slow the effects of this condition and make the person stronger in order to tolerate it's degenerative effects. go to WEB-MD and do a search on it for more information.