Pulmonary Fibrosis Support Group

My husband was also diagnosed about a year and a half ago. He has a terrible caugh like your father has. We have found nothing that helps. He just has to caugh until it stops. I it is very scary. Sometimes I wonder if I should call the ambulance, and then he stops. It has been all down hill ever since he was diagnosed and he is on oxygen 24/7.
I feel for both you and your father.
Carmine

Thank you Carmine. It helps me feel that I am not alone on this scary and frustrating journey with IPF. I know exactly how you feel when your hubby is coughing. We all just tense up and I pray to myself, "please God, help him to stop". I feel for my Mom especially because, like you, she is with him all the time and has to deal with it 24/7. I don;t know if you pray or what, if any is your religion, but when all seems hopeless, I pray, I will pray for you and your beloved husband too. Be strong.

Is your husband taking NAC (N-acetylcysteine)? This is an over the counter supplement available in health food stores or online from Puritans Pride. It has been shown in studies to improve IPF. It is not a miracle cure, but every little bit helps. Also, it often has the added benefit of thinning the mucus which helps with the cough. Most people with pulmonary fibrosis take 600mg three times each day. I also take 500mg of vitamin C with each dose and I drink a lot of water because NAC can dry you out. BTW, there is another online forum called huff-n-puff that is very active and may also be worth joining.

Thank you for your prayers. David does use NAS, but is only taking it 2 X daily. He said he forgets to take it the third time. He also does not drink much liquid except coffee, which I have told him only makes the caugh worse. I need to talk to his doctor again.
Carmin

Hi--My mom had pulmonary fibrosis (never a smoker) and she was on Prednisone for the coughing. It helped a great deal. Has your dad ever been on that medication?

Hi Annie,
Thank you for your input. Has your Mom past? If so, I am sorry for your loss. My Dad isn't on anything yet...except for trying a few less radical meds for his cough (nothing works). We are waiting to have him on Prednisone and though I am hearing how it really does help some people, the side effects seem so drastic and he also has a heart condition (thinning of the arteries) so we are waiting to get the final word from his cardiologist. My Dad is tough and he doesn't want to be on ANY meds but I think that eventually he will give in.

David has been on mucomyst for several months now. I hope it helps your dad.
Carmine

my husband has a horrible cough also. Just tried Tussinex which is a prescription drug.It made him sleepy all day so he stopped it plus there is another drug called Tussalon Perles which may help. We just asked our doctor for a prescription to try. You never know what will work for you. Also, my husband is joining a clinical trial in august at John Hopkins for just the coughing so that's also promising. Also, you need to get a consult at a big hospital like Duke, John Hopkins, Mayo, etc. they know alot more about this disease than our local doctors.

Thanks to all of you for all the suggestions about how to treat the terrible cough. I was just diagnosed if Interstitial Lung Disease last week and am going in for a VATS Wed.

Was on Chinese herbs for this for almost 2 weeks--then they told me I needed to stop a week before surgery. My cough has gotten much worse since then--it had really improved with the herbs.

I find when it's a really bad attack I have to get down on my knees with my head on the floor--it seems to lift the diaphragm away from the lungs and give it a bit more room. But if it's that bad my husband has to rush to get the nebulizzer (I'm still using xopenex). It was pretty effective in stopping the spasms until the past 2 days...now it diminishes it so I can at least breathe, but the cough comes back pretty soon. So I feel I'm rapidly getting worse--especially since being off the chinese herbs. At least they said I could go for accupuncture this week before surgery.

I also called my Dad's cousin last night--he has pretty bad COPD--and guess what has helped him the most--in addition to oxygen--CHINESE HERBS and accupuncture!!!

Will pray for all of you--prayer keeps me going, along with family, friends, and all of you--it helps so much reading all of your experiences and suggestions. Thanks so much.

I am intrigued about the Chinese herbs. Can you give more info on that? What are the names of the herbs? It seems the symptom that is truly giving my Dad a hard time with this disease is the cough(getting the phlegm up). We will try anything within reason...:0)

Thanks so much,
Michele