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Hello. I am currently caretaker to my FIL who is currently struggling with pulmonary fibrosis (in addition to diabetic neuropathy). Has anyone out there been in a similar position? He has a walker and oxygen in addition to other meds. Do you have any ideas for making him more comfortable, etc? Please share your experiences/ ideas with me,

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My mom's cardiologist just took her off Pacerone (amiodarone) because it's causing lung fibrosis, which has gotten worse in the past four years (from a lung x-ray). That was the first I had heard of it. My mom is 96 and has been very stable for 3-5 years. We only went to the doctor because they made us to get her more prescription renewals. We hadn't been in a year. She also hasn't been to her PCP either.

My question for the nurses on here is my mom gets a monthly check by the village nurse for her INR. She always checks my mom's pulse ox and it's always 98-99%, which I know is very good. Does that correlate with her lung function at all, i.e. would that tell me that her lungs are doing their job pretty well at this point? My mom gets winded very easily from any exertion, but that's primarily from her severe aortic stenosis, I was told in the past by her cardiologist.
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Hi Tsalite,

These caregivers have all shared some excellent advice. This article may be able to provide more tips and suggestions for helping your father-in-law find some comfort:

Caring for a Loved One with Lung Disease
https://www.agingcare.com/articles/Caring-for-a-Loved-One-with-Lung-Disease-200009.htm

It sounds like you already have some experience in working with the VA, but Agent Orange-related conditions can be tricky to secure benefits for. If you haven't already, I would consider doing some additional research or consulting with a VA specialist to ensure that your FIL is receiving the benefits he deserves for having bravely served his country.

I hope this helps!
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We're pretty sure his is a result of exposure to chemicals. Specifically, Agent Orange. They have already attributed his diabetic neuropathy to it a couple years ago. Gerd has not been mentioned, nor has a lung wash, which in all honesty sounds completely awful (lol).
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Medicines that are known to cause pulmonary fibrosis in some people include nitrofurantoin (an antibiotic), amiodarone (a heart medicine), methotrexate and bleomycin (both chemotherapy medicines). Have they made sure he doesn't have GERD also? Has anyone tried a lung wash? Make sure he breaths while pushing his diaphram down. Arms lifted above the chest allow for easier air passage to the lungs
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My partener was diagnosed with IPF when he was 52. Other than that, he was a healthy and very active many. He went to visit the Pulmonary Rehab on our way home from the pulmonologist right after the diagnosis. He never stopped moving even after he was on O2 24/7. Advise he would give to others suffering with this horrible disease was, "Exercise is your friend." He was one of the lucky ones who got a double lung transplant in 2009 and is back to working, playing and enjoying his life. He probably was "too sick" for the transplant as he was no longer able to stand or walk on his own when he got the call, but the transplant team knew him well and did everything thing they could for him. He has been a model patient.
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So sorry to hear that he has such a devastating illness. Unlike COPD (emphysema and chronic bronchitis), pulmonary fibrosis is characterized with air hunger since oxygen levels get quite low as the disease progresses.
Oxygen starvation tends to keep the person at rest and as a result deconditions muscles that can make it easier to breathe.
You can help him be comfortable by asking him to do some simple exercises such as trying to walk for at least 6 minutes and improving upper body strength by either doing arm raising exercises or very light weights. And that is only if he is willing. Start out slowly such as 1 minute at a time and then gradually increase. Upper body tone is for strengthen the muscles for breathing. You can tell if he is deconditioned if he cannot groom his hair.
Second is his oxygen levels. You may want to purchase a drug store version of a saturation monitor (about $50) and use it when he walks to see if his saturation levels go low. Ask his doctor or pulmonologist where his levels should be. It may be 89 to 91% unlike a normal person at 92-96%. You can increase his oxygen flow when he is active. Oxygen is considered a drug so you can ask his doctor if this is OK to do.
As his disease progresses and his oxygen needs are higher. You may want to seek hospice since he may need opiates to reduce the feeling of shortness of breath.
Lastly for anyone who uses home oxygen I suggest you download this short book written by Doctor Thomas Petty shortly before he died. He was a Colorado pulmonologist and a home oxygen user who wrote many articles on home oxygen to improve quality of life. His studies set the bar on determining prescriptions for home oxygen use.
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My husband has PF also known as a COPD. There is not much to do except make sure he keeps away from irritants that will make his breathing worse. I had his pulmonary doctor put him on Singular because no doctor ever checks the IgG (immune response to allergens), and I know he is allergic to our dogs. He would not hear of me getting rid of the dogs, so this is the best compromise. He also does not take any other meds, and is not on oxygen.
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An adjustable bed would probably make it a lot easier for his breathing at night. Elevating the head assists breathing. Elevating the legs helps keep the legs from swelling up.
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