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Old 01-08-2004, 06:00 PM   #1
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esterlou26 HB User
Question do you have pulmonary fibrosis..

My mom just told me today that she has pulmonary fibrosis.
I have read many articles on the internet about it but would like to hear from some one first hand about it.

She has also had lung surgery from having lung cancer and now has liver cancer that spread from the lung.

She is on chemo now.

Any thoughts would be appreciated...

 
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Old 01-08-2004, 09:37 PM   #2
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delrae4753 HB User
Re: do you have pulmonary fibrosis..

my husband has pulmonary fibrosis and pulmonary asbestosis I would be happy to answer any ? you may have
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Last edited by delrae4753; 01-08-2004 at 09:37 PM.

 
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Old 01-08-2004, 09:46 PM   #3
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esterlou26 HB User
Re: do you have pulmonary fibrosis..

Quote:
Originally Posted by delrae4753
my husband has pulmonary fibrosis and pulmonary asbestosis I would be happy to answer any ? you may have
I just do not know what to expect now. My mom has already had surgery for lung cancer that had spread to her liver.
And now she tells me of the pulmonary fibrosis. I just do not know what to expect next. She trys not to tell me to much ahead of time because she thinks I worry to much but I can not help but worry.

I also want to thank you so much for your reply..

 
Old 01-10-2004, 09:19 PM   #4
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Re: do you have pulmonary fibrosis..

first of all let me tell you that there is no none cure for the pulmonary fibrosis there is usually an association with asbestos exposure somewhere in her life she must have been exposed yopu are like me left in the dark to find out about this stuff. what i did was a search i typed pulmonary fibrosis in the browser and went from there they have lots of site you can choose to read from do your self a favor look it up read and read and read. a lot of times the patient is put on inhalers, oxygen and steroids. what to expect is that over a period of time the breathing will become progressively worse. if she dont smoke then she has that to be grateful for. my hubby does smoke and heavy and he will not quit and he has gotten very weak. i will try to help you the best i can but i am still learning and trying to find answers.
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Old 01-11-2004, 01:12 AM   #5
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esterlou26 HB User
Re: do you have pulmonary fibrosis..

I am so thankful for your response...

THis is not my moms only issue this is just one of many things that has come her way... so please if you read this please reply.

thanks

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Old 03-26-2004, 05:56 PM   #6
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marinebluesoul HB User
Re: do you have pulmonary fibrosis..

Quote:
Originally Posted by esterlou26
My mom just told me today that she has pulmonary fibrosis.
I have read many articles on the internet about it but would like to hear from some one first hand about it.

She has also had lung surgery from having lung cancer and now has liver cancer that spread from the lung.

She is on chemo now.

Any thoughts would be appreciated...
I have pulmonary fibrosis. I smoked for many years but quit 17 years ago. My doctors tell me that some people who never smoked have gotten this disease. At first I was just short of breath and didn't know what it was. I had never really been sick and so it took awhile before I even went to the doctor.

It's great that you want to be supportive of your mother. I have two adult sons and two daughters-in-law. My older son and his wife don't really want to deal with the situation and avoid talking about it altogether. My younger son and his wife are incredibly supportive.

One of the most important things is to respect your mother's wishes about her care and treatment. Some people want to try every drug and take every step possible, including lung transplants. Others, like me, will try drugs as long as the side effects are not too dire but will not be having transplants. The life expectancy with a lung transplant is 3 - 5 years and the recovery period is about 6 months. I am very fortunate that my younger son and his wife and my friends, as well as my pulmonary doctor at UCLA, are supportive of my choice. My choice is to live my life as fully as possible.

A few weeks ago I stopped working. Until then I had been a Corporate Employee Relations Manager with a Fortune 100 insurance company; a job that was both challenging and meaningful. However, reality set in and now that my lung capacity is down to 42%, I came to understand that I had to slow down. Every time a door closes, another one opens. I have developed a passion for drawing and painting (something I never even dreamed I could do) and have re-established connections with old friends and established some new ones.

In some ways this is much more difficult for those who love me than it is for me. I have never had a fear of death and that, of course, is extremely helpful since it frees me to live as fully as I am physically able.

If you have any specific questions or would just like someone to listen, please let me know how I can help.

 
Old 05-14-2004, 10:22 PM   #7
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delrae4753 HB User
Re: do you have pulmonary fibrosis..

esterlou hows your mom
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Old 05-18-2004, 12:22 PM   #8
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caregiver HB User
Re: do you have pulmonary fibrosis..

My husband had a form of the disease called "idiopathic pulmonary fibrosis" meaning they have no idea how he contracted the disease. He had quit smoking 25 years previous and had never been exposed to asbestos.

I understand your frustration about not knowing what to expect. As previously stated here there is no known cure and the treatments that do exist are not very effective. The added problem of your moms cancer throws another unknown factor in as to how well whe will respond to any treatments.

All I can really say is take it one day at a time and know you are not alone

Take care

 
Old 05-22-2004, 06:28 AM   #9
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esterlou26 HB User
Re: do you have pulmonary fibrosis..

Quote:
Originally Posted by delrae4753
esterlou hows your mom
Sorry it has taken so long for me to get back. My mom had to have surgery on her liver. The chemo did not kill the tumor so they had to remove a portion of her liver along with the tumor. For now the lungs still remain clear but the tumor they removed from her liver was stage 4 cancer so they say it will come back, as the original cancer started in the lung and moved to the liver. Mom is in great spirits and getting around well since her surgery 2 weeks ago. She still coughs alot and all but I think that is the pulmonary fibrosis. She has so many problems that I sometimes can not even keep up with them all. I try to stay happy with her though because thats all she wants is for us all to be happy and not depressed and crying.

 
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