End Stage Pulmonary Fibrosis

Specialties Pulmonary

Published

Can someone please pm me about this? I'm sorry for not being more specific. I just don't know what to do to help this sweet lady. I feel completely helpless. :(

Thanks for any advice...

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Specializes in Vents, Telemetry, Home Care, Home infusion.

interstitial lung disease and pulmonary fibrosis

while the progress and symptoms of these diseases may vary from person to person, there is one common link between the many forms of ild. they all begin with an inflammation. the inflammation may affect different parts of the lung, as explained below:

1. the walls of the bronchioles (small airways). when inflammation involves the bronchioles, it is called bronchiolitis.

the diagram below shows the changes that happen in lung tissue with interstitial lung disease.

pulm.jpg

2. the walls and air spaces of the alveoli (air sacs). when inflammation involves the alveoli, it is called alveolitis.

3. the small blood vessels (capillaries) of the lungs. when inflammation involves the small blood vessels, it is called vasculitis.

inflammation of these parts of the lung may heal or may lead to permanent scarring of the lung tissue. when scarring of the lung tissue takes place, the condition is called pulmonary fibrosis.

fibrosis, or scarring of the lung tissue, results in permanent loss of that tissue's ability to transport oxygen. the level of disability that a person experiences depends on the amount of scarring of the tissue. this is because the air sacs, as well as the lung tissue between and surrounding the air sacs, and the lung capillaries, are destroyed by the formation of scar tissue.

http://www.lungusa.org/site/pp.asp?c=dvluk9o0e&b=35436

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think of the lungs scaring like shoe leather: gets stiff doesen't bend, so oxygen can't get transported across the cells.

treatments mainly steroids, oxygen therapy (maybe higher flow 3-4 litters, with sarcodosis i've seen 6 liters), if high flow: oxygen tubing with resevoir helpful, mini nebs, energy conservation techniques/pulmonary rehab, flu and pneumonia vaccine. lastly lung transplant if appropriate.

links:

pulmonary fibrosis: patient information handbook (pulmonary fibrosis foundation) - large pdf file

[color=#330066]treatment: from coalition for pulmonary fibrosis

what every patient with ipf should know (text version)

to download a pdf version of this guide click herefile_pdf.gif.

treatment: idiopathic pulmonary fibrosis

[color=#330066]disease management

pulmonary rehabilitation and oxygen management for the ipf patient (added 1.18.08)

oxygen therapy (american lung association)

what you can do: idiopathic pulmonary fibrosis (coalition for pulmonary fibrosis)

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Thank you so much for your reply. She is not a candidate for transplant. Never smoked a cigarette in her life. Sucks. Talked to daughter yesterday. They say she would never make it through surgery.

She is now home for Christmas. Daughter says when she was first admitted the docs gave her 3-4 days, but now aren't giving a timeframe. She and the family have decided against hospice for personal reasons, but she is comfortable and being well cared for. She has a very supportive and caring family. I was able to talk to her and she was her usual self, perky and optimistic. :)

She did have flu and pneumo vaccines this year. Regularly scheduled nebs, prednisone, diuretics, and o2/energy conservation have been long term treatments. Other than the increase in O2 to 6LPM I'm not sure what if anything, new has been added. I see her again on Tuesday.

Thanks again for your response. I know there's not much I can do for her. I admit to selfish feelings of comfort when the family tells me how much it means to them to know I care. I have been her home health nurse for nearly a year. Love home health, but sometimes it sucks. Someday maybe I'll be able to keep myself from getting attached. Don't see how, but maybe. I was told by my DON when she hired me to not let myself get too involved. This coming from a woman who is one of the biggest softies of us all. :)

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Specializes in LTC, CPR instructor, First aid instructor..
interstitial lung disease and pulmonary fibrosis

while the progress and symptoms of these diseases may vary from person to person, there is one common link between the many forms of ild. they all begin with an inflammation. the inflammation may affect different parts of the lung, as explained below:

1. the walls of the bronchioles (small airways). when inflammation involves the bronchioles, it is called bronchiolitis.

the diagram below shows the changes that happen in lung tissue with interstitial lung disease.

pulm.jpg

2. the walls and air spaces of the alveoli (air sacs). when inflammation involves the alveoli, it is called alveolitis.

3. the small blood vessels (capillaries) of the lungs. when inflammation involves the small blood vessels, it is called vasculitis.

inflammation of these parts of the lung may heal or may lead to permanent scarring of the lung tissue. when scarring of the lung tissue takes place, the condition is called pulmonary fibrosis.

fibrosis, or scarring of the lung tissue, results in permanent loss of that tissue's ability to transport oxygen. the level of disability that a person experiences depends on the amount of scarring of the tissue. this is because the air sacs, as well as the lung tissue between and surrounding the air sacs, and the lung capillaries, are destroyed by the formation of scar tissue.

http://www.lungusa.org/site/pp.asp?c=dvluk9o0e&b=35436

-----------

think of the lungs scaring like shoe leather: gets stiff doesen't bend, so oxygen can't get transported across the cells.

treatments mainly steroids, oxygen therapy (maybe higher flow 3-4 litters, with sarcodosis i've seen 6 liters), if high flow: oxygen tubing with resevoir helpful, mini nebs, energy conservation techniques/pulmonary rehab, flu and pneumonia vaccine. lastly lung transplant if appropriate.

links:

pulmonary fibrosis: patient information handbook (pulmonary fibrosis foundation) - large pdf file

[color=#330066]treatment: from coalition for pulmonary fibrosis

what every patient with ipf should know (text version)

to download a pdf version of this guide click herefile_pdf.gif.

treatment: idiopathic pulmonary fibrosis

[color=#330066]disease management

pulmonary rehabilitation and oxygen management for the ipf patient (added 1.18.08)

oxygen therapy (american lung association)

what you can do: idiopathic pulmonary fibrosis (coalition for pulmonary fibrosis)

i have cor pulmonale and let me tell you it is extremely painful.. the walls of both of my atria are now thickened, and my left ventricle is hypertrophic. my pulmonologist is trying to wean me off of theophylline, because it stimulates the heart too much. i have been on it since 2001, so i don't know how successful he will be.

anyway, the last time i was on a home monitor i became breathless, and my heartrate was so fast it caused the monitor to malfunction. i was told to go directly to my doctor's office where they took an ekg, then they took me off of one tablet of theophylline (i'm still taking 1 1/2 with some singulair.) i was also given an echocardiogram that looked like my heart was beating alright by then..and my heart medication was decreased to 180mg twice a day. i was taking 240 once a day. i was weaned down another tablet of theophylline by being ordered to take one every even day. when i did that, i got very dizzy and lightheaded, and breathless, so i went to plan b (nurse treat thyself) i broke the tablet i take in the evening in half, evening the dosage out over a 7 day period. that makes me feel better. i still have 1 and a half tabs yet to go.

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Specializes in LTC, CPR instructor, First aid instructor..
interstitial lung disease and pulmonary fibrosis

while the progress and symptoms of these diseases may vary from person to person, there is one common link between the many forms of ild. they all begin with an inflammation. the inflammation may affect different parts of the lung, as explained below:

1. the walls of the bronchioles (small airways). when inflammation involves the bronchioles, it is called bronchiolitis.

the diagram below shows the changes that happen in lung tissue with interstitial lung disease.

pulm.jpg

2. the walls and air spaces of the alveoli (air sacs). when inflammation involves the alveoli, it is called alveolitis.

3. the small blood vessels (capillaries) of the lungs. when inflammation involves the small blood vessels, it is called vasculitis.

inflammation of these parts of the lung may heal or may lead to permanent scarring of the lung tissue. when scarring of the lung tissue takes place, the condition is called pulmonary fibrosis.

fibrosis, or scarring of the lung tissue, results in permanent loss of that tissue's ability to transport oxygen. the level of disability that a person experiences depends on the amount of scarring of the tissue. this is because the air sacs, as well as the lung tissue between and surrounding the air sacs, and the lung capillaries, are destroyed by the formation of scar tissue.

http://www.lungusa.org/site/pp.asp?c=dvluk9o0e&b=35436

-----------

think of the lungs scaring like shoe leather: gets stiff doesen't bend, so oxygen can't get transported across the cells.

treatments mainly steroids, oxygen therapy (maybe higher flow 3-4 litters, with sarcodosis i've seen 6 liters), if high flow: oxygen tubing with resevoir helpful, mini nebs, energy conservation techniques/pulmonary rehab, flu and pneumonia vaccine. lastly lung transplant if appropriate.

links:

pulmonary fibrosis: patient information handbook (pulmonary fibrosis foundation) - large pdf file

[color=#330066]treatment: from coalition for pulmonary fibrosis

what every patient with ipf should know (text version)

to download a pdf version of this guide click herefile_pdf.gif.

treatment: idiopathic pulmonary fibrosis

[color=#330066]disease management

pulmonary rehabilitation and oxygen management for the ipf patient (added 1.18.08)

oxygen therapy (american lung association)

what you can do: idiopathic pulmonary fibrosis (coalition for pulmonary fibrosis)

:up:good info karen. thank you.
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