Pulmonary Fibrosis- your experience?

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.

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!

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).

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

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.

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.

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.