cpfeln
Forum Replies Created
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My pulmonologist suggested that anyone with my lung disease CPFE see a therapist to help with the up and down of depression. When I first started researching pulmonary fibrosis with emphysema I became very afraid and depressed. My therapist has been wonderful. I know my lung disease has a poor prognosis. I have my affairs in order now and am taking it one day at a time. I would recommend to anyone dealing with depression seek out help. Ask your primary care for a referral. No person has to handle this alone.
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I was prescribed Trelegy and it was a game changer for me. Within a week the cough was completely gone. I started at the 100 mg inhaler for about one year and am now on 200 mg. It’s been a game changer for the wracking cough I had. It is an inhaled medication that you use once a day. It lasts the full 24 hours.
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I need to add my doctor has recommended OFEV on my last two visits. I have chosen not to take that route for a few reasons. The first being, the multiple side effects and second my insurance doesn’t cover it.
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So far there have been no new significant changes since my last visit. I am still on Trelegy 200 mg per day, oxygen o4 lpm. 24/7. Thank you for all of your responses.
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Has your doctor recommended Trelegy. It is an inhaled medication taken once daily in 100mg or 200 mg. I thought nothing would help my cough until my pulmonologist put me on it. I have CPFE combined pulmonary fibrosis with emphysema. Within a week my cough was completely gone. I have been changed to the higher dose and do have some cough with extreme exertion but it has been a wonderful relief from the constant cough.
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I agree with some of the others, get a new doctor. There are many different treatments and medications out there. I was prescribed Trelegy an inhaled combination of three medications. It was a game changer for my cough. I no longer wake up with the cough. I also put a humidifier by my bed so I am not waking up so dry and congested. Unfortunately we have to be our own advocate with this disease. I went for 6 months misdiagnosed by my primary care. If something is not working for you tell your doctor or find a pulmonologist that works for you. Good luck and don’t give up.
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I contacted COVID in December of 2019. My primary care treated me for what he thought was bronchitis, then pneumonia. In March of 2020 I was referred to a pulmonologist who diagnosed COVID.
The COVID cough continued for several months until I was sent for a HRCT. I also had the ground glass and pulmonary fibrosis. Six months later I had another HRCT where they saw emphysema in addition to the fibrosis. My new diagnosis is CPFE ( combined pulmonary fibrosis with emphysema. How does this relate to long COVID??? I am on oxygen 24/7 and am still unpacking all of this information. Who knows how this will go in the future. I am 69 with autoimmune so I would not be a candidate for lung transplant. I am taking it day by day. I am on Trelegy which has helped a lot. It is the only thing that has stopped my cough. Best of luck.
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I was vaccinated as soon as it was available, I was boosted for each variant. I got COVID in Jan 2020, I got each variant. So I ended up getting it 5 times. I am beginning to think I may be one of those who the vaccine doesn’t work for. I did take the RSV, pneumonia, and flu shot this fall.
I developed pulmonary fibrosis after the first COVID-19.
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I am also relatively new to oxygen. I was diagnosed recently with pulmonary fibrosis with emphysema CPFE. I am on oxygen 24hrs a day. I tried oxygen bottles which were very cumbersome. I switched to a portable concentrator. I have a bad back so I purchased a tiny luggage rack and attached the concentrator with Velcro.
My problem is my oxygen lines becoming tangled and pinched off.