My dad was diagnosed with Pulmonary Fibrosis in Sept 06. He seems to be on a rapid decline. He is in advanced stages and damage to his lungs is extensive. He is on medication but it doesn't seem to be helping and he has been refused oxygen as test showed that using it did not help him. I can only fnd a limited amount of info on the disease and I'm not sure what to expect. He is constantly breathless and can bearly walk around his home. It is so frustrating that nothing seems to be able to make him feel more comfortable. He sees a specialist every 3 weeks but inbetween appointments we just seem to be on our own. I know the outlook for him isn't very good. If anyone has experience of this disease then I would be grateful for any info.
2006-12-07 09:00:50 · 5 answers · asked by JENNIFER F 1 in Health ➔ Diseases & Conditions ➔ Respiratory Diseases
My mother died from it. If I had it I would try taking 400 iu of Vitamin E 3x daily and MSM 1-2 grams 4x daily. This may (no guarantees) slow down the scarring process.
2006-12-07 10:04:04 · answer #1 · answered by Mad Roy 6 · 0⤊ 1⤋
HELLO JENNIFER F.,
i have had interstitial pulmonary fibrosis since october 2004. i was in the hospital for 30 days , 11 of which were spent in a coma in intensive care, when i was admitted, i was only hours away from death. i am so sorry that your dad is not doing very well.....i too, have extensive damage to my lungs and my pulmonary doctor now ( 2006 ) has me taking a high dose of prednisone, i am on oxygen 24/7, and i take another rx called
cellcept to keep my lungs from being stiff. it was a long and scary journey and i am still pretty sick but i try to keep a positive out look and just take it one day at a time. i'm not very old, actually pretty young to be laid up like this.....maybe it is not my place to say this.....but if i was in your dad's place, i would get a 2nd opinion from another pulmonary doctor and see if maybe the 2nd opinion might give you some hope.....i cannot believe that your dad is not on oxygen.....if i didn't have my oxygen then i probably would have gone to heaven long ago.......see if there is any way to get a home health nurse to come in and be with him on a daily basis so she can report her findings to the doctor.....but, please please get a 2nd opinion.......i wish that i could do more to help you......and i truely hope your dad gets better. if you would like to e-mail me with any questions my e-mail address is: inpogue@yahoo.com God bless you both and i hope you all can have as nice of holidays as possilbe. i will definately pray for you..........
2006-12-08 19:36:34 · answer #2 · answered by sweetness #1 5 · 1⤊ 0⤋
I had a friend who had the same condition. She was very ill for a long time, and the doctor gave her three months to live. She lived 26 years after she recovered from the initial onslaught of the illness. As far as I know there is no treatment or cure - aside from possibly a lung transplant. I would imagine your dad would qualify for that. I can't imagine though that the oxygen wouldn't at least make him more comfortable. I can't offer more than that, except to say that I've heard of a number of people with it, and they are doing okay. Good luck and God bless.
2006-12-07 09:11:51 · answer #3 · answered by theophilus 5 · 2⤊ 0⤋
you should have access to a specialist respiratory nurse who will come to your home , explain everything in terms you understand and be able to give advice on how to make your dads life more comfortable. You can also contact her at any time which means you don't have to wait three long weeks if you are worried.
2006-12-07 09:15:01 · answer #4 · answered by Anonymous · 1⤊ 0⤋
heres the link to web site that will give all the answers you need, hope it helps
http://www.pulmonaryfibrosis.org/ipf.htm
2006-12-07 09:12:49 · answer #5 · answered by Jacqueline M 3 · 2⤊ 0⤋