Hi, Leading up to the recent diagnosis via CT scan I had had a dry cough for 16 weeks, coming about from a viral chest infection, leading to a bacterial infection 4 weeks later when the GP prescribed antibiotics. The cough persisted afterwards, and 2 weeks ago got worse making even light exercise difficult. 12 days ago I was hospitalised and diagnosed with Covid positive and pneumonia. Treated with antibiotics (doxycycline) and prior to discharge the pulmonary consultant said a breathing test would be performed in out patients in 4 to 6 weeks, together with another CT scan. Then after specialist input decide whether either perfenidone or nintedanib would be appropriate for me.
I must say this is rather frightening and somewhat daunting that it’s an incurable disease, that could be life limiting.
Looking for as much info so joined today (18/8/24).
Written by
Exflex
To view profiles and participate in discussions please or .
Just want to welcome you to the forum and hope others will be on soon to help after your shock diagnosis. You’re in the right place for caring, helpful advice. Take care xxxx
Thank you so much. 🙏 When I get out of bed in the middle of the night for bathroom duties I find my breathing troublesome, in that I can’t get enough oxygen. It’s a terrible and frightening experience.
Welcome to the forum. There are other people on this site who have IPF and there have been a fair number of posts about it in the past. I hope someone will be along who can tell you how to access them. The Helpline nurses (tel. 0300 222 5800) are very helpful and the European Lung Foundation (ELF) has recently started taking an interest in this condition, which means research should get a bit of a kickstart. Best wishes.
Welcome to the forum, as Alberta56 has advised, do feel free to give our Clinical Team a call for a chat, they can answer questions about your diagnosis and answer questions you may have -asthmaandlung.org.uk/about-...
I remember when my doctor said I had IPF and it was just a comment he didn’t think I heard. When I looked it up when I got home, I was in shock. I think this was the diagnosis after just a CT scan. I was referred after having severe bronchitis and x-rays that looked suspicious enough to warrant a pulmonologist look. It wasn’t until a few years later that I saw a specialist in ILD (InterstitI’ll Lung Disease) that I had extensive testing, including for antigens that could cause my body to attack my lungs. I also had a surgical lung biopsy. No antigen was found but this is not unusual. Given all the factors of the testing and CT scans, I was diagnosed with Chronic Hypersensitivity Pneumonitis not IPF. It is also incurable and progressive but not as aggressive as IPF usually is. I am telling this story so that you seek out the proper doctors to get the proper tests and treatment. I take medications and have a couple of great specialist in ILD. I don’t need these visits often and also see a local Pulmonologist for regular visits plus oxygen requirements. I do take Ofev which I wish had been prescribed sooner. I wish I had done exercise to keep up my body strength as recommended. I am doing exercise now after a long unrelated illness. It has been 10 years since my first diagnosis. This forum has a lot of resources and hope you reach out to them as you navigate this illness. Wishing you well and hope you let us know how you are doing.
Thank you very much for discussing your condition. A few days before being discharged from hospital the consultant informed me of the next steps, first to get over the post Covid symptoms then after a breathing test a further CT. He mentioned being reviewed by specialist and also two potential medicines, one being Pirfenidone and the other Nintedanib (also known as Ofev, I believe). I’ve been given a date for the breathing test on the 20th September.
Thanks again! This is a very disturbing diagnosis to be provided.
Hi, just wanted to welcome you to this warm, friendly, supportive and fun forum. Can't help with any advice but you will have lots of good replies I know. Take care xxx🙂
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed with bronchiectasis
Anyone here been diagnosed with 'Bronchiectasis'?
Dad been diagonise with copd but now docs saying not sure can anyone help 
Mild COPD, emphysema and lung scarring.
Newly diagnosed with bronchiectasis 
