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End Stage pulmonary fibrosis
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Hi, I am new to this site and found it trying to find information on the end stage of pulmonary fibrosis. My dad was diagnosed about 5 years ago and in just the last 2 months he has really gone done hill fast. He was hospitalized about 2 weeks ago after passing out on his in to see his pulmonary doctor. Thank God, I was with him and we were right next door to the hospital! He was in for 4 days and they increased his oxygen from 2 liters to 5 liters and it doesn't seem to be enough. The last 2 days have really been bad for him. He says his legs are hurting when he stands and he is getting really weak. He is also getting depressed.
The doctors aren't giving us any kind of a time frame but I am wondering if the end is approaching since he seems to be getting worse daily!
This has been a terrible struggle for me because my oldest son left for Afghanistan in March and my sister and her family live in another state. My husband has been fantastic but just too much to take all at once! I have been reading other comments and they have helped a great deal with my understanding of this disease. I really need support from those who understand this disease.
Thank you and God bless!
Posted on 05/20/11, 10:50 am
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Reminder: This is a support group for Pulmonary Fibrosis. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 05/20/11  10:10pm
" I'm so sorry that you are going through this and that your Dad has taken a turn for the worse.

I have had pf for two years now and I was just put on oxygen in Jan. I am only on 1lpm at rest and 2 lpm on exertion.

Maybe 5 lpm is not enough do you know what his saturation levels are.....they need to stay over 90 if possible to stay comfortable.

Be very direct with the doctors and tell them you want to know what to expect and what kind of time frame your looking at, you deserve to know what is coming.

Ive read a few descriptions of the end for those of us with pf....they can make sure he is comfortable. If you have any other questions I will do my nest to help.

My Dad just had a stroke and then they found lung cancer and they only give him a year.....I feel the anxiety you have about your Dad.

Be well
Beth "
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Reply #2 - 05/21/11  10:37am
" Beth, Thank you for your encouragement!
My heart is breaking for you! To have to go through this terrible disease and to have your Dad ill as well is more than anyone should have to bear!
When he was in the hospital several weeks ago, his saturation levels were in the 90's at rest but would drop to the 60's & 70's with any exertion.
We are going to try to get him into a new pulmonary doctor next week. His doctor is over an hour away and we are trying to find someone closer. Hopefully that will all work out.
I will add you to my daily prayers!
Thank you again!
Kim "
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Reply #3 - 05/21/11  12:34pm
" Love and prayers are with you all - my heart broke as I read the above post ... big hugs "

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