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Discussion:
Ideopathic Pulmonary Fibrosis
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Hello, I am new to the Pulmonary Fibrosis discussion, but not to DS. My Dad was diagnosed with Ideopathic Pulmonary Fibrosis in 2005, but didn't really have any symptoms. Within the past year he has show progression. He has difficulty going up and down stairs. It isn't that he can't do them, he just has to stop to catch his breath. As of right now that is his only symptom. I have been reading all about this disease online and it is making me very nervous. It seems that it varies greatly from person tp person. Some progress quickly, some slowly. I just don't know what to do. I feel overwhelmed with the thought of losing him. He's only 61.
Posted on 03/09/12, 07:04 pm
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Reply #11 - 04/10/12  5:01pm
" Not to scare you, but hubby was diagnosed 2yrs ago and was just recently told by a pulmonologist he is too far gone to even do a biopsy. He has been on O2 since beginning and has progressed from 2liters to 6 liters now and can no longer walk across the room without having to stop and rest. And if he gets to coughing (which is all the time now) he gets worn out even faster. The only time he goes out the door now is to the doctor. He can't even go to our favorite little cafe, nor can he ride his motorcycle. He's only 65. We did get to go on a cruise in Jan.'11, good memories! Good Luck! "
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Reply #12 - 04/11/12  10:44am
" hillycat, sorry to hear how your husband has declined. i can relate to how much that cruise meant to the two of you. my wife and i went to the black hills last labor day on our trike. it is a memory that the two of us will take to the grave....probably me sooner than her.....

i got the biopsy in jan.....i have had all the CT's.....all the PFT's.....and now have been approved for SS starting in a couple of month.s.....and as of yet....am not on O2.....so am trying to make as many memories for family as possible.....

it would be nice to meet and greet the two of you.....especially since i live so close.....i have only met a couple of people so far with PF....since the disease is rare, there aren't too many and even fewer support groups......wish the best for both of you "
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Reply #13 - 04/14/12  1:49pm
" Four yrs ago,was diagnosed with non-specific interstitial pneumonia, this has now progressed 2 PF. I am 63 and play golf twice a week. have become breathless recently after 13 holes. Going 4 an MRI scan, this week and further lung tests. I am healthy at the moment,but worry about the future. Does anyone know how long you have left after diagnosis. Any info would be gratefully accepted. "
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Reply #14 - 04/15/12  9:56am
" yes! i know exactly how much longer you have....each day....live each day.....i know that sounds somewhat sarcastic, but the truth is that is all any of us have is today.

my pulmonologist told me the average is 2.7 years. however, that is an average based on historical data and not a prediction of an individuals life. each person will decline at their rate and not based on a actuarial graph. your metabolism, your overall health, your family history, your physical activity level all play into how much longer you have left to live.

the truth is that some become diagnosed early and live a decade. others don't get a diagnosis until much later and only live a few years or months after finding out that they have PF.

bottom line is.....our life is not measured by how many breaths we have, but by how many breathtaking moments we experience....live each day for what you have.....it is a gift... "
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Reply #15 - 04/15/12  10:07pm
" My dad met with a specialist and he said my dad is a "unique" case. He was diagnosed with IPF 7 years ago only gets slightly winded climbing stairs. He walks everday on his lunch break at least a mile and doesn't get winded at all. The Dr suggest he uses oxygen at light, not as a necessity, but to take pressure off his lungs. He suggested he get himself on the transplant list, seeing the cut off is age 65. He said he didn't think he'd need before then. He siad it was best to be in on it just in case. He also tol him to take part in clinical studies. My dad said he was all for it, but "his life is too precious for sugar pills", so if he does a study he wants the drug. He suggested whenever he did yard work, spept the garage, to make sure he wore a mask. The major concern for the Dr was if my dad was to get a cold or pnuemonia. That could be VERY bad. He has to get a flu shot every year and the pnuemonia shot. If he feels a cold coming on, he need to call the Dr right away. My dad does feel a little more hopeful since meeting with this specialist. He knows there is no cure and he's going to do whatever the dr's recommend. It is an awful disease. My prayers to all of you! "
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Reply #16 - 04/19/12  2:13pm
" My dad was diagnosed about 7 years ago. We just lost him on April 3 at age 87. I think one thing that kept him going for so long was a sense of purpose. Four years ago we thought he was getting ready to decline into the final stages when my mother's health started declining. My dad got out of his recliner and stepped up to the plate - taking care of laundry, household chores, even getting breakfast on the table. He lived 3 years after her death. I also think that a pulmonary rehab group that he did early on (reluctantly :-) ) also helped him a great deal. "
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Reply #17 - 05/16/12  5:30pm
" Hello Kristin,
Reading the posts in this section brings me back to how I suffered with IPF. My first symptoms were in 1998. My Dr originally diagnosed me with seasonal asthma. My symptoms, which were mostly a severe cough, were only present in the winter. My Dr put me on prednisone for a couple of weeks and I seemed to get better. When the warmer weather rolled around, I was normal. He never took a chest film or HRCT which he should have. This went on for years but the symptoms ceased in the period of 2006-2009. Following that, it got worse. I went to an new pulmonologist who hinted "many people do well with lung transplants." I had it in my mind that it was going to go away as always. I really had no idea how serious my condition was until it REALLY started going downhill in Aug 2010.
What I learned is that IPF can plateau, some time for years, but when it get's bad, it can do so quickly. Hopefully your dad has followed up with a transplant physician and has been evaluated. Many eligible IPF patients die because they are not referred to a transplant program in a timely manner. I received my gift of life Jan, 2011. This coming weekend is my lung transplant program's annual beach picnic. I was very lucky to meet a great bunch of people in my community who had gone through what I was about to and supported me through a trying time. It would be great if your dad were able contact recipients in your area through a support group. Sounds like he is hooked up with a good Dr. Listen to him. Good luck and God Bless! "

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