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Thread: UIP/IPF lung disease

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    Mad as a Hatter Ellie's Avatar
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    UIP/IPF lung disease

    Usual interstitial pneumonia is a form of lung disease characterized by progressive scarring of both lungs.[1] The scarring (fibrosis) involves the supporting framework (interstitium) of the lung. UIP is thus classified as a form of interstitial lung disease. The term "usual" refers to the fact that UIP is the most common form of interstitial fibrosis.

    Causes

    The cause of the scarring in UIP may be known or unknown. The latter situation is more common. Since the medical term for conditions of unknown cause is "idiopathic", the clinical term for UIP of unknown cause is idiopathic pulmonary fibrosis (IPF). Examples of known causes of UIP include systemic sclerosis/scleroderma, rheumatoid arthritis, asbestosis and chronic nitrofurantoin toxicity.

    Symptoms


    The typical symptoms of UIP are progressive shortness of breath and cough for a period of months. In some patients, UIP is diagnosed only when a more acute disease supervenes and brings the patient to medical attention.


    Prognosis


    Regardless of etiology, UIP is relentlessly progressive, usually leading to respiratory failure and death. Some patients do well for a prolonged period of time, but then deteriorate rapidly because of a superimposed acute illness (so-called "accelerated UIP"). The outlook for long-term survival is poor. In most studies, the median survival is 3 to 4 years. Patients with UIP in the setting of rheumatoid arthritis have a slightly better prognosis than UIP without a known cause (IPF).

    http://en.wikipedia.org/wiki/Usual_i...tial_pneumonia


    I am posting this because I have a 42-year old friend, mother of 2 DDs, who approx 6 months was healty, vibrant, working and playing. Around that time she had a cough and was just not feeling up to par. She was diagnosed with "bronchitis" (first diagnosis), which developed into pneumonia (2nd diagnosis) and today it is UIP. When she was first diagnosed (bronchitis), she was given the usual treatment of antibiotics. At 2nd diagnosis (pnuemonia, maybe 4-6 weeks later), she was so gravely ill that she was put into a medically induced coma for almost 2 months to allow her body and lungs to try to heal. Which to some extent they did, as she did get better. She was released from the hosp right before Xmas, on 24/7 oxygen and respiratory therapy. She seemed OK for about a month, but never really seemed to gain any strength back. And she coughed constantly. In mid-Jan, things started to go south again and lung biopsies were done. Last weekend, she was put back into the hospital, and back into the coma, as her lungs are no longer capable of functioning. Two days ago, she was diagnosed w/ UPI. The doctors say that her lungs are akin to brittle tissue paper. And her only hope is a lung transplant. However, she will need to be driven 350 miles to the nearest transplant-capable hospital and "put on the transplant list". To wait. But at this time, she cannot even be shifted in bed without a lung collapsing or tearing. IF she is ever able to get a lung transplant, the doctors told her it might extend her life 2-4 years.
    There is no cure for this disease.

    I had never heard of this disease until 2 days ago. And I am mortified by the rapid onslaught of this disease and how it seems to be destroying my young friend. In reading about this, it appears there can be many causes, as described above. And if I am understanding the "causes", one can also "have" this disease, undetected for many years, and then another acute illness (perhaps such as bronchitis or pneumonia) can cause the disease to accelerate. OR it can be caused by pulmonary toxicity due to the use of the antibiotic Nitrofurantoin (used to treat UTI - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000640/).
    http://www.uptodate.com/contents/nit...lmonary-injury

    Has anyone else ever heard of this, or known anyone who had such?

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    GUIDE i<3handbags's Avatar
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    Oh no! I wish I knew something about this to help, but I don't. How old are her daughters?

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    GUIDE PinkPixie's Avatar
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    I'm very sorry to hear that your friend is going through this. My heart goes out to you, her, her family and friends. So sad

    Ive heard of it via my medical studies, but I don't have firsthand experience or knowledge beyond textbooks. I wish I knew more or could help somehow.

    Sending healing energy and warm thoughts out to her. I hope somehow she can pull through.

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    Mad as a Hatter Ellie's Avatar
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    Quote Originally Posted by i<3handbags View Post
    Oh no! I wish I knew something about this to help, but I don't. How old are her daughters?
    17 & 19

    Thanks, girls. I am pretty much just stunned. It's been a long week, it seems.

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    Ellie - I am so sorry to hear this. DH and I will put your friend in our prayers.


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    aka Karen! HuskyLover's Avatar
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    How terribly sad. I have never heard of this disease/illness either. Will put her and her family in my thoughts and prayers, hoping for a miracle.

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    Ellie I'm so sorry to read this - my prayers for your friend and family. What a horrible disease, to most commonly have no known cause either!

    I really hope she is able to get the transplant she needs.

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    Mad as a Hatter Ellie's Avatar
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    Thanks, girls. And I am sorry that I have not responded to this. I am so pissed about this that I have trouble even discussing it. There are so many at fault here... initial mis-diagnosis when she would have been strong enough to transport to a diff med facility. And, her ins co's denying treatments, that contributed to the level of decline of where she is now. Unbelievable.
    No change at this time. Still praying that she can get healthy enough for transport to a hospital who can put her on the list for lung transplant.

    This is sooo not right.

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    LV, Chanel & Dior Savannah's Avatar
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    Ellie, I am so sorry for your friend. I hope and pray she can get stronger and get the much needed transplant. Her poor family must be devastated.

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    Mad as a Hatter Ellie's Avatar
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    Quote Originally Posted by Savannah View Post
    Ellie, I am so sorry for your friend. I hope and pray she can get stronger and get the much needed transplant. Her poor family must be devastated.
    I know.. And thank you.
    Her family is numb. Prior to putting her in the coma, the med staff asked her what she wanted to do. And basically, the choices were (a) continue as-is until you die, or (b) hope for a transplant that gives you 2-4 more years. And she had to make a decision. Either way, she was going to be put into a coma and only time would tell how long she had. She opted for whatever she could get and is now fighting for every day.
    She has so many things still left to do in her life. But her life is no longer her own. It's so unfair.

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    Permanently Banned on BBC dslm4's Avatar
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    OH NO!! Ellie, I am so sorry, I missed this thread, I hope and pray she get stronger and get the transplant, any extra day, months, years, once she have the transplant is a bonus for her and family, God Bless her, hope for the best..stay positive! xo
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    Pets! Pets! Pets! ranag's Avatar
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    Quote Originally Posted by Ellie View Post
    I know.. And thank you.
    Her family is numb. Prior to putting her in the coma, the med staff asked her what she wanted to do. And basically, the choices were (a) continue as-is until you die, or (b) hope for a transplant that gives you 2-4 more years. And she had to make a decision. Either way, she was going to be put into a coma and only time would tell how long she had. She opted for whatever she could get and is now fighting for every day.
    She has so many things still left to do in her life. But her life is no longer her own. It's so unfair.
    This is just heartbreaking Ellie. Are they keeping her in a coma until a transplant organ is possibly available? I just am so sorry that she and her family have to go through this! The bs with the insurance company should be criminal.


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    balancing mishmash's Avatar
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    I am so sorry Ellie.
    It is good that she is fighting back for life, wanting to live-and I do hope that a transplant will come soon for her, all the family and her dear friends.
    I can imagine that it must be a hard decision to make.




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    Mad as a Hatter Ellie's Avatar
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    Thank you. I've stayed away from this thread, as even after posting it, I can't read it.
    Cris is now out of her coma. She has had lung repair surgery to try to stitch up the tears, and it's holding ATM. If it continues to hold, she will be able to try for transport to Baylor for a possible transplant.
    I just ask.. please pray for my Cris. Her youngest DD has quit college to be home and tend to her Momma. Her oldest DD has also come home to help the family. Her DH is doing all that he can, but quite frankly he MUST keep working to (a) keep the bills paid and (B) his job pays for the health ins that foots this bill. The only thing he can do is work, as that provides for medical help for Cris.....and yet he feels guilty. Our office has taken over their mortgage payments, so that they do not lose their home. But nonetheless, this is a family torn asunder, each trying to do what they can. Please pray for this family.
    I love this woman as my own sister. She needs all the blessing that can be bestowed. Thank you

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    Permanently Banned on BBC dslm4's Avatar
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    Quote Originally Posted by Ellie View Post
    Thank you. I've stayed away from this thread, as even after posting it, I can't read it.
    Cris is now out of her coma. She has had lung repair surgery to try to stitch up the tears, and it's holding ATM. If it continues to hold, she will be able to try for transport to Baylor for a possible transplant.
    I just ask.. please pray for my Cris. Her youngest DD has quit college to be home and tend to her Momma. Her oldest DD has also come home to help the family. Her DH is doing all that he can, but quite frankly he MUST keep working to (a) keep the bills paid and (B) his job pays for the health ins that foots this bill. The only thing he can do is work, as that provides for medical help for Cris.....and yet he feels guilty. Our office has taken over their mortgage payments, so that they do not lose their home. But nonetheless, this is a family torn asunder, each trying to do what they can. Please pray for this family.
    I love this woman as my own sister. She needs all the blessing that can be bestowed. Thank you
    Will do, prayers is wonderful thing to give, easy and can be done anywhere, any time, this is one thing we all can give and do!!
    Ellie, all these wonderful thing everyone did for Cris, touch me deep down, hope Cris bless with recovery and have her health back, god willing, she will be in my prayers...xo
    Spend in Charity, for the benefit of your soul.

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