I’m hoping someone can help as I’m so worried. I started feeling breathless before Christmas and was diagnosed with a chest infection but after 2 courses of antibiotics still had low oxygen sats. Then there were concerns I had a PE so had CT . No PE but xray and CT showed ‘infection’ at base of both lungs although symptoms were just breathlessness and dry cough.
now 3 months on I have had another X-ray with no results ( 2 weeks ago). My sats are 97 at rest but drop dramatically on light exercise. I have ‘crackles’ on lungs and have been referred to respiratory specialist. I had pleurisy in 2019.
Im terrified I have pulmonary fibrosis. I am 51 years old and have never smoked
Thank you for reading this
Bronte x
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Bronte007
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Your body is very complex, so it is really easy to worry that symptoms mean that you have a certain condition when in fact you do not.
I spent three years with the cardiac specialists convinced I had a cardiac condition, because I had chest pain, breathlessness and nasty attacks. In fact I had asthma. Obvious now, but not then. So I had loads of needless worry.
There is a huge range of things you could have and the respiratory consultant will help you find out which it is, and then you MAY join all of the rest of us with some irritating chronic condition.
None of these conditions fundamentally mean anything, you are still the same person, and being given a label will just help you manage it.
From a practical angle, politely, nicely and without emotion follow up your referral. My favourite method is by email to the consultants secretary, otherwise to the department. Make it clear that you can do a short notice appointment.
Thank you Homely2 for your kind reply. I did of course Google everything and it was always the nastiest things that came up ! I’m on my own a lot as my husband works away and all my children either are at university or work away from home ! X
hi, I cannot help wondering which antibiotic you were prescribed earlier h time. Can you recall? Some bugs causing infections can be really stubborn and need a very good antibiotic for two weeks at least, sometimes a short course of steroids too. I believe Pulmonary Fibrosis can be heard through a stethoscope, different lung issues make different sounds (ie crackles = infection, pleurisy rasping sound, there are others but I cant remember, sorry.
When I was in my early 50s my childhood asthma came back with a vengeance then about ten years later the asthma took a downturn leading to many many chest infections , NHS England's first port of call Amoxicillin never ever did a thing where other abs did. Keep going to your GP whilst remembering that GPs are 'general' practitioners.
I had amoxycillin and then something stronger ( can’t remember!) I had back ache and then my colleague was diagnosed with covid the week before Xmas . I’d spent a lot of time with her in the 3 days prior to her diagnosis. I tested for a few days that week but was negative. Then I felt better over Christmas and then on 29th December I was really breathless and went to GP and this is when it all started. I am wondering whether it could be long covid with a chest infection?
Hi again I hadn't noticed that you are a newly joined member of this great forum so a very warm welcome to you Bronte007!
Ditto, 29th Dec I was also hit with something nasty. I caught a virus over xmas, 30th spent in bed , 31st dosed myself up & drove home to my own bed where I spent the next 3 weeks. Incessant dry coughing brought on asthma closing airways , fever sheets & pillow soaked, couldn't get through to GP. It wasn't covid but I've heard since that there was nasty virus going around , the 'not covid virus'. I'm still breathless on exertion & walks so its been a long humdinger. Finally three months later I'm beginning to think I might get my previous energy & health back as in light at the end of the tunnel.
Of course I'm not medically qualified and I well remember ten plus years ago being in your position & desperate for a diagnosis. I was finally referred to a consultant, gp was flummoxed for diagnosis & suspected aspergillosis or bronchiectasis - yes, I googled those! The best thing I did was find this forum in March 2013. Lots of understanding of the emotions we go through, support and knowledge of several lung diseases I had no idea existed. I know receiving knowledgeable advise & support helped me get a whole lot better.
Hopefully you're in the throws of recovering from a 'not covid virus' & the fatigue that goes with it 🤞🤞🤞. It's great that you've had a CT scan and it seems your GP is supporting. It took two years of pneumoni& stubborn infections to get referred & a CT scan in summer '13. I'd stick to NHS websites and all the information Lung Conditions has on all lung conditions.
The helpline is fantastic for professional guidance so do give them a call on 0300 555 280 uk office hours. In the meantime have a look at breathing exercises on youtube, both Pursed Lip Breathing and Deep Diaphragm Breathing can help enormously. I often use pursed lip breathing on walks to aid shortness of breath. For me both of those help lower my heart rate and raise sats. All the best. P
Hello Brontë, 😊👋About ten years ago I had similar symptoms. Breathlessness upon exertion, low saturation upon exertion and crackles. So I understand your concern. I have a lung disease called Bronchiolitis Obliterans which attacks the smallest airways in the lungs. This does not mean you have this disease of course. There could be a myriad of reasons you have these symptoms that are not always chronic illness.
At the best of times x-rays do not show damage to the small airways. In my case even a CT revealed nothing but my lung function had already dropped to 30% by that point. They diagnosed me based on multiple six minute walk tests, lung perfusion imaging and now I can't remember what else because I was too weak to undergo a biopsy. Right now you are just speculating that you may have PF, but please remember speculation is not knowledge. I encourage you to grab this opportunity to see the lung consultant and go there armed with questions and as much information as you can offer about your symptoms. Ask for diagnostic testing. Some lung diseases are notoriously difficult to diagnose. Whatever it is, you will cross that bridge when you come to it, right now just take it a day at a time.
Hello Bronte007, welcome to this forum. It is friendly, informative and hugely supportive. Love the Zebra. In medical jargon zebras represent rare diseases. Hence mine. I’m glad you are being referred to a consultant. Make a few notes before you go so that you can ask the right questions. Is there anyone who could go with you? That can be helpful. I am deaf and even with hearing aids I can miss things, especially when everyone is wearing masks. These things are worrying and it is very understandable that you are worried. You are human and are bound to speculate about the causes of your symptoms. We are often told here not to worry and not to google. But we all do both. My googling has been very helpful: patients with rare diseases often know more about their particular condition than their doctors. We just need to be tactful about divulging our knowledge!
I have it and with the new medication I am improving so much my specialist is over the moon I hardly cough at all now. I know there is no cure but don’t panic,good luck
I have had COPD since childhood in inner London in the 1950s and Pulmonary Fibrosis since 2018 developing after a severe bout of Organizing Pneumonia triggered by RA, which came along with GERD. I have found that the most important thing is to try and keep a clear head and make sure that every day counts. Find the best specialists and keep asking questions. Keep walking, enjoying your life in whatever way makes your heart sing and find the best place to live for your lungs - I moved from Melbourne to Canberra to manage my breathing. The air quality and my breathing has really added years to my life. There are many encouraging studies now underway around the world to find a slowing and perhaps stopping of PF. Medical miracles are happening every year, look at the vaccination developments for Covid in the past 3 years! There is hope for us. I have had many illnesses in my life including ovarian and breast cancer and I plan to outlive my doctors!!!
I was like that for years honestly kept giving me antibiotics which I couldn’t take once I was on inhaler and tablet I don’t know myself I wouldn’t run a marathon but I’m like someone else said now able to manage my condition the worst case scenario is you’ll have to pace yourself which you will learn to do stop looking at google and try and not worry too much it just makes things worse like you I never smoked take care x
Hi sorry to hear this. I’m just wondering if the infections you had were actually Pneumonia. I’m no expert at all but I had similar in 2019. 2 chest infections one after the other & in hospital for IV antibiotics. 3 months later I had a phone call from a respiratory dr to say they would like to repeat the chest x ray to see if the Pneumonia had cleared. No one ever told me I had Pneumonia 🤷🏻♀️ it was still apparent at the base of my lungs so had more antibiotics. Just wondering if that may be causing your issues too. I hope you get some answers soon. The waiting is awful x
Welcome to the forum. I hope you get an answer soon and that the excellent suggestions some of my colleagues have given you will reassure you till then. Let us know how you get on.
Hi like you I worried about my lungs. I had pneumonia five years ago and after I got home had breathing problems especially after a night sleep. I woke up one morning unable to breathe I managed to get to the loo as you have to first thing. I’d used my inhaler but I passed out. It must have only been seconds because I was just dropping my inhaler and top after I had slammed into the shower. Luckily I had sat back on the loo. I saw the Dr and went back in hospital that afternoon. They did a scan and the result I had back was you have interstitial scarring. I always understood interstitial scarringgto be pulmonary fibrosis but I have been assured it’s not. So speak to your Dr or Consultant and find out exactly what is wrong. I was worried for quite a while about it.
Must say I would still be inclined to say pneumonia and ask for better meds - if a virus you may need an anti-vital. Is there any history of respiratory disease in your family (not at great age which is less significant)? 97 is a good peripheral saturation level. The drop (if more than 5%) suggest the infection is quite severe in my experience.
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Copd emphysema update
Quite worried there's something seriously wrong.
Organising pneumonia - how soon do the steroids kick in?
institual lung disease
Can you still have lung problems with a normal pulmonary function test?
