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Advice:
How lomg can a person live with pulmonary fibrosis
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i was dx with pul. fibrosis and the docotor seems to avoid the question of how long can i live with this disease.does anyone know?
Posted on 12/03/07, 11:19 pm
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Advice:
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Reply #1 - 12/21/07  8:33pm
" Because they don't know. I can only tell you how long my mother lived from her diagnosis. She was dx in January 2001 and she died October 9, 2007. Lots of people live much longer and there are treatments on the horizon. "
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Reply #2 - 12/30/07  11:30pm
" I was just dx with IPF, but there are indications on old x-rays that I may have had the disease for several years. How can I tell how far the disease has progressed? Are there certain signs [symptoms] that one sees as the disease progresses? "
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Reply #3 - 01/09/08  7:33pm
" I'd like to know this also. My husband was just diagnosed with IPF yesterday. I've been doing some research on the web and nothing commits to a time line of any sort. I think it depends on the degree of impairment when diagnosed and how healthy the person is other than the lung disease. As for my spouse, he has emphysema on top of the IPF. He has an appointment for a respiratory therapist to look into rehab and exercise. I don't want him to just curl up and die, because if I can have more time with him by following the established treatment programs, then we're going to do it. Honestly - this is frightening stuff though. I send you mega-hugs. "
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Reply #4 - 01/17/08  11:04am
" It seems that the progression of the disease is different for everyone. My mom died from IPF in Jan. 07. She started getting shortness of breath in Sept. of 06 out of nowhere.Then went in for a lung biopsy on Jan. 8th and was gone 2 weeks later, but there are others that have lived for many years in slow progression. I know some that have lived 10 yrs with this disease. Unfortunatly, most of the time people do not realize they have it until it has already progressed. most of the time Dr's will give a 5yr life expectantcy after diagnosis. However, most Dr's do not know enough about the disease. So, I would recommend going on to Pulmonaryfirbrosis.org they were a wonderful help for me regarding this disease. "
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Reply #5 - 01/23/08  1:23am
" Well, All I can say is this March i will be making 8 years living with this illness. And I thought back in the beginning i wanted to know how long i had left. But now i am glad i don't because I think i would be to busy doing count down til the end instead of living my life to the fullest as i can be doing. I was a single mother at the age of 29 when i came down with it. Once i got some strenght back and able to get around no matter if it was in a wheel chair or not i push my self to live because i had my son to live for and i didn't want to miss out on seeing him grow up. I took each day as it came and made it the best day as i can make it. I started out where i couldn't walk one step norless thinking about how am i going to raise my son. Well with the love of my family and friends standing behind me and my son who gave his whole heart to me to help me out when i can't get up or just little things that i use to take for granted before the illness. He was 6 at the time and now here i am 8 years later he is 14 and i am going as strong as i can be. I just keep my faith and say i am control of me not this illness and i am not going to let it kick me down and when it does i will get right back up, and that is how i do it. And did i mention i am also happily married to a wonderful Man who loves me so unconditional. (sorry for spell errors) We will make four years of marrage on July 17. I moved three thousand miles from home and family to make my life with my husband. which turn out the best thing i did. I found great Doctors that stand by me and are there day or night. I took little steps each day. one day it was one step the next it was two and so on. Now i can push the buggy at the grocery store and shop. ITs rough some days and i may use the scooter. but when i am up to it i walk that way i get alittle strenght more. OK so i say stop worrying about the end and start making the best of today. And don't worry about tomorrow until tomorrow comes.

Godbless
Lisa "
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Reply #6 - 04/10/08  11:29am
" From all that I have been told there are two kinds of PF. You have the fast and the slow. Now how they determine that is with a open lung biopsy. Most people with the fast have around five years or less. The slow people have been known to have over 5yrs+ there are people I know who have had it 20 years. This is what I was told others may disagree. "
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Reply #7 - 04/16/08  6:07pm
" My doctor has patients who have lived 30 years with PF. Sometimes it worsens and then just suddenly stops. I was dx with a very complicated version of PF when I was 44 and am now 51.
^_^ "

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