Meredith
Forum Replies Created
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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 your doctor says to do, eat healthy meals, protect yourself from the thoughtless things some people say. If you are well today, be happy. If you need to start using oxygen therapy or raising your O2 level just do it and don’t worry about what other patients are doing.
I don’t know why I have IPF, I was afraid of oxygen, I had to switch antifibrotics, I’ve had an exacerbation. Today I am feeling great. If that’s not true tomorrow I’ll call my pulmonologist.
Keep moving forward, don’t stop to compare, do the next right thing no matter what others are doing.
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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 be a respiratory suppressant.
I think it’s important that we patients not discuss the use of controlled substances on the forum nor to focus on medications.
we must trust our pulmonologists and stay away from med discussions. Even the comments on Ofev and Esbriet made me Leary of using either medication. Many new patients read the responses looking for advice.
let’s try to stay focused.
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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 pulmonologist and be compliant. Every case of IPF presents with slightly different symptoms. You only have today so make it be as good as possible. Have some ice cream (not a quart, eat chocolate, haves a little wine, kiss the cat. -
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 enough to walk 30 minutes a day. I’m 80 years old. Feeling well and strong is a big deal.
One day at a time and stay grateful. Knowing the cause satisfies your curiosity but PF progresses anyway. Today is Tuesday. It’s still a great day
Meredith