I’m in the process of finding out what’s going on so don’t know very much about my situation yet, but the short story is I had a CT scan on Tuesday and my GP practice phoned the next day (yesterday) and told me I have severe bullious lung disease. I have been referred to respiratory and also to cardio-thoracic. My respiratory appointment is Friday next week.
I’m terrified. I’m only 38 and I have 2 young children. My GP mentioned lung surgery as a possible treatment but I’m really trying not to get ahead of myself as I know she hadn’t actually seen the CT report yet, she was just going off the phone call she’d just had from radiology. From what I can gather I think I have bullious lung disease as opposed to bullious emphysema with copd, but I’m not sure, I really haven’t been told very much and Dr Google is doing an awful job at reassuring me 🤦♀️
Does anyone know what to expect when I attend my respiratory appointment or my cardio-thoracic one?
Thanks x
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Nelly_123
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So sorry for your diagnosis, its good you are being referred to respiratory specialist and for cardiac checks, this is routine after CT scan that shows lung disease.
Respiratory check at the hospital is usually, checking your weight, height, blood pressure, a spirometry test and a full lung function test.
The cardiac test is where they ultra sound scan your heart and possible you will be sent for xray and blood tests.
Its good the hospital are being thorough and you are getting all the test as is routine after CT scan.
Try not to get ahead in your mind of things, because really you won't know the actual diagnosis until all the tests are done and you are called back for the results.
Of course if you are smoking do try and stop asap. If you have never smoked I wonder if you should request or ask your GP about the Alpha1 Antitrypsin test, just to rule that out. It may be that the hospital will request that test though, you could ask when at the hospital.
Don't hesitate to give the BLF helpline a call for further clarification and support.
Best wishes to you, take extra good care and wherever possibly try to avoid exposure to anyone who has a cold or flu virus, and definitely take extra good care from exposure to covid-19.
Thank you for your informative reply! It’s nice to know the double referral is routine and good to have an idea of what might happen at the appointments.
Unfortunately I have smoked for 24 years (and now feel so, so stupid) but maybe the hospital will look into it anyway due to my age, it’s certainly worth asking if they don’t mention it.
Welcome to the forum... I know nothing about your lung issue, but I will offer this..based on my own experience... Dr. Google's specialty is, I believe, scaring patients to pieces.. Hopefully, others here will be more informed and helpful. Best Wishes, J
I can't help with your enquiry, but just want to wish you all the best as you go through these tests. Once the doctors know what condition you have, they can start to treat it so that you feel better than you do at present. ((((Hugs))))
Welcome! I'm afraid I can't offer any information about what may be going on with your lungs but I CAN say that I, like you, turned to Dr Google when I was first diagnosed and according to what I read, I should be dead by now!!! Instead, I am fitter than I have been for several years, despite having lung disease.
I have found that the NHS site is usually helpful and the British Lung Foundation information is particularly good, in my opinion. However, what I have learned (eventually) is that it's best to wait and see what the medics have to say, rather than worry about what might be going on. I have had several health 'scares' during the lockdown that have turned out to be nothing to worry about so, at last, I have realised that I do myself no favours by paying too much attention to what I find on the internet.
I do find this group helpful, though, as people are willing to share their experiences and some members are particularly knowlegable. Mainly, though, I love the support we can all give each other and the friendly banter that goes on.
I hope that things work out ok for you and are not as serious as you fear, but whether they are or not, it will be good to hear from you again and to know how you have got on.
Hi Nelly 123 and welcome to the site. I dont have any answers for you and cant add to anything to the advice from Bkin, but wish you well , please keep us updated x
Hello Nelly. Welcome to this site. I'm afraid I can't help you with your condition, but it's good that you are getting a very thorough once over so quickly. Try not to worry too much. I bet there several things they can do to help you manage it. Just try to keep fit, keep calm and enjoy your kids. (Do I sound like a cliché ridden old great aunt? That's cos I am one.)
Some of the folks on this site are very knowledgeable- do let us know how you get on.
I have booked into an online Alan Carr stop smoking seminar, which is running tomorrow, I’m going to stop smoking. I am i am i am. Wish me luck!
I’m trying my best not to freak out but can’t shake the feeling that no one who has lung disease at my age lives to be an old person. I feel like I might die in the next 15 years or so. I just don’t know??? I really hope the hospital can help me, waiting to find out what’s actually going on is horrible.
Welcome to the community. Sorry I don’t know about bullious lung disease. but I know to pass any diseases you have to be strong and do what is best for your health and you will be fine. Keep updating us 💕
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