Meredith

Improved spirometer y values mean that you were breathing better the day you took the test. It does not mean that your disease has improved. The good news would be that it

Yes, TLC AND FVC May fluctuate but scans and X-rays tell the real story. Keep seeing your pulmonologist so that if you have an emergency you know who to call.

I’m a doctor b…[Read more]

Hello all.
There is no shame in needing and using oxygen. If your doctor says you need it at 2lpm, why aren’t you doing that?
You will consistently feel better, you’ll be keeping your heart strong, and your judgement will not be impaired because of poor oxygen supply.
With a POC you usually need one setting higher. I carry mine by hand but put…[Read more]

Hello all.
Most of us are patients. We can only relate our own experiences.

Those in this discussion do not mention contacting their pulmonologist. Why would I trust my health to other patients, oxygen equipment sales people, or internet websites.

This is a serious disease. No one knows my personal history and disease information than my…[Read more]

Pulmonary Fibrosis is incurable and progressive. It can be aggravated by environmental issues such as smoke, allergies, chemicals. The progression may be fast or slow. It doesn’t go away. Supplemental oxygen may be needed.
I can’t tell of your GP is being dishonest or just doesn’t know about PF.

Ask for a a pulmonologist referral.

Meredith

Weight management usually depends on my attitude and my prescription meds. I have severe IPF and immediately began Ofev. My doctor perceived little difference between the two but felt the company patient rep was helpful. I was very sick nausea, vomiting, diarrhea for months. My weight did not change. I changed to Esbriet and had few digestive…[Read more]

First of all you will never read about someone’s end of life experience. For all we know it was peaceful.
I try to stay in the day and I can plan for tomorrow only to the extent that I know I can change my plans if I want to.
It would not be helpful to know. Intellectual knowledge may make you always miserable.
You’ll be cared for.
Accept the…[Read more]

I also reacted to a brief time in the sun. I used sunscreen on my face an neck and the rest of my body was covered. It was very hot that day. When I got home there was a rash on my face and by evening I was itching all over. Next day was fine. Now I stay out of the sun. An umbrella is helpful.

We have to make hard choices with our disease. If…[Read more]

Two tasks a day keep the doctor away.

I get overwhelmed and too tired with more. If I only stop when I feel tired I end up with achy muscles and cognitive difficulties.

Two days of rest for each day of letting myself overdo it

Meredith

It sounds like oxygen therapy can treat the breathing issues. I dint want it but boy, do I feel better with it

OFEV and ESBRIET are supposedly only for IPF not all PF. I have had IPF for two years and had a numbers of tests to determine the cause. None was found.

At that time all test results had to be sent to drug manufacturers and my insurance company to prove my eligibility.

They appear to be helping. At least I certainly feel better and am strong…[Read more]

Truthfully no one is going to be able to tell you that they lived 7 years with PF and then died. We only have the day we are living in.

The trick is not allowing yourself to compare your case to others. Every person is different. The amount of oxygen, hours used, test numbers, hours spent walking don’t really help you.

Be reasonable, do what y…[Read more]

This long series of messages were not really about PF symptoms of coughing, sneezing, breathing problems. They seemed to be about weather, vacationing, accidents, and food.

Codeine has been a known cough suppressant for decades. Hydrocodone is a synthetic codeine. Both are schedule 2 controlled substances. Perhaps not in cough syrup. It can also…[Read more]

I am an old lady,79, who had radiation and chemotherapy for breast cancer 30 years ago. It may have caused my IPF. A lot of things may have caused it. It doesn’t matter now. What matters is that we must concentrate on feeling pretty good each day as it comes.
If you have IPF you’re not seeing an oncologist anymore.
Listen to your pul…[Read more]