cpfeln
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I got COVID the end of December 2019. I was treated for several lung infections. My primary care sent me to a pulmonologist after 8 months of COVID shots and boosters. I had the normal testing and a HRCT. The pulmonologist diagnosed me with pulmonary fibrosis. Six months later I had a follow up HRCT where they discovered I also had emphysema. It is CPFE combined pulmonary fibrosis with emphysema. This diagnosis resulted in my going on oxygen 24/7.
On medication, I am on Trelegy 200mg, Prednisone, and CELLCEPT or mycophenolate 2000mg a day. I also have had autoimmune since my 20’s. The CPFE diagnosis freaked me and my family out as the prognosis is 1 to 3 years. It’s 2025 and although I feel short of breath without oxygen the prognosis now looks more like 10 years. New drugs are being used every day. I’m pretty sure it was COVID that set all of the lung issues in motion. I was never short of breath or coughing before that.
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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.