New here! Collapsed lung, Bullae and shadow on lung?!

Hi, my name is Claire and I have been having problems with my lungs since September. I am a 21 years old, have never smoked and have been rather healthy until around three years ago. I started to get unwell in 2012 and doctors ignored this even though I told them countless times I was breathless and tired all of the time. They finally found found something after they heard an unusual sound in my chest in September 2014 and firstly I was sent away with antibiotics as a doctor thought it was a Chest infection. A week later another doctor then sent me to have a chest x-ray and it was found that my lung had collapsed, so after a failed aspiration and a chest drain my lung finally started to re-inflate. I was allowed to go home after a week, with a follow up appointment in the future. Since I was still getting chest pain and feeling breathless and had a bad cough they moved my appointment forward and I had a CT Scan and this showed on the top of my left lung, I have several Bullae which are to be removed and I also have a shadow on the bottom of my lung which has to be investigated. They don't seem to want to tell my anything which is very concerning to me as I have no clue what it could be. I still get all of the symptoms above and waiting for this operation is extremely stressful, especially as I have been waiting since late November and still do not have a date for the operation (which was supposed to be February) as my hospital is cancelling operations left right and centre. I just wondered if there was anyone that has been through anything similar and could tell me anymore? I'm literally clueless and would appreciate hearing other peoples stories!

34 Replies

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  • Hello Claire and welcome to the Community. Sorry to hear that someone so young has such a big worry about their lung health. The reason that the docs don't want to talk about your shadow is because it genuinely could be a number of things. Even possibly just a shadow caused by your heart. There is really no point in worrying. Yes I know. Easy to say. They will let you know as soon as they are certain and then get you set up to deal with it.

    Regards Rib

  • Thanks for your reply. When they first told me about it I wasn't worrying too much, but you know what its like the more time it is between seeing them and actually finding out what's happening the more you worry. I try not to think about it a lot but since they're wanting to take a biopsy of whatever it is this obviously concerned me more. The more you're told by the doctors not to worry, the more you do worry, it's a difficult struggle!

  • Well hopefully now that you have found your way here sharing your worries will make it a bit easier to bear. Rib

  • Yes I hope so, I'm glad I found this already! :)

  • Hi Claire,

    Welcome to the site. You couldnt be in a better place. Everyone here will answer your questions and talk you through everything. Just want to chat we're here .

    Any questions you have we'll do the best to answer . Nothing beats experience Claire.

    Hang in there

    Rubyxx

  • Hi Claire am thinking of you and hope all goes well. Take care. x

  • Thanks everyone, it really means a lot that there's much more support than I realised, I really appreciate it! x

  • Unfortunately at this time of night there are only a few members about. Those who haven't settled down yet. Those who can't sleep. Those who are in too much pain to sleep and those who are too scared to sleep. Finally those who are from outside the UK and for whom it isn't nearly 1 in the morning ☺

  • Haha yes I thought a lot of people would be sleeping so wouldn't see this. I'm just one of those who can't get to sleep very well most of the time, so I stumbled across this which is great!

  • Oh don't worry about the sleepers. They will be all over you in the morning. Meeting and greeting.

  • Hi Claire welcome to the forum as Ruby said there are a lot of people here who have what you have and will share their experiences with you. I agree with you the Doctors & Consultants should be telling you more being worried and anxious does not help your frame of mind so start asking questions yourself after some of the advice you will receive here. Good Luck I am one of the no sleepers so me and my dog Indy are away for another walk she just loves the snow. mattcass

  • Thanks Matt. I think the doctors take one look at me and don't tell me anything because I'm young and they don't want to scare me. They wouldn't have told me about this shadow unless I'd mentioned that I have a persistent cough so they said "oh yeah you have a shadow on your lung too" and then made me leave. It's just a joke sometimes, I wish they would just tell me something..

  • Hi Claire

    Welcome, you have the right to get copies of all your medical records from the hospital. It's called a Data Subject Access Request (DSAR) the information on how to do this will be on your hospital trusts website. The consultant will also have written to your GP so you could make an appointment with them and ask them to talk through that letter with you and get a copy. You have a right to this information. I have copies of all my medical records. You can also request that the consultant send a copy of any letters to your GP directly to you as well.

    In relation to the waiting time I would ring your consultants secretary to find out what is happening.

    Don't be passive, this is your health and I've learned the hard way that once you've stepped out of their consulting room you're forgotten until some computer spits out your name somewhere in the future.

    Jackie

  • Thank you very much for this Jackie, that was extremely helpful and I will look into this! I have contacted the surgeons secretary several times, but because of the nature of the operation and where I live there is only one man for the job, so therefore there's a long waiting list which I'm sat on just behind the cancer patients and the people with life threatening illnesses. I've contacted my GP several times but he's also very wary to tell me anything as he said everyone doesn't know much as what I have is so rare for me, so they don't really know what to say until I get under the knife!

  • It must be a worry for you, but the docs need to investigate further before they can find out about the shadow on your lung, it could be something simple and i hope they sort you out soon.Welcome to this great site it has given me great help and comfort and a lovely group of people too. Will be thinking of you keep your chin up young one . xx

  • Hello praying 4 good health welcome I'M also New!

  • Hello Faithful, welcome to the Community. Rib

  • Hi you take care we will look after you xx

    Dorothy xx

  • Thinking of you Claire and hope you get some resolution soon :)

  • Hi Claire, big welcome. We are always here and happy to chat and answer questions (if we know the answers!). There is a lot of experience here.

    I can't say anything about your shadow that hasn't been said already. Re the bullae, has your GP mentioned Alpha-1-Antitrypsin to you? This is a genetic form of emphysema that occurs in younger people and could perhaps explain why you have symptoms like bullae. As you probably know bullae are holes where the alveoli walls have broken down so that the air sacs have joined together, making less surface for oxygen to get absorbed into the blood (and carbon dioxide to be removed) - this could explain why you are breathless.

    You have a right to know what is going on with your operation date. Your GP should be your advocate here but they are so busy and stressed these days with NHS cuts/pressure etc and as you've said he's loathe to say much as your condition is rare. But he/she should still be pushing for your best interests and communicating with the hospital. The kind of operations which are being cancelled are routine ones such as cataracts and hip replacements, but I would have thought your operation should be classed as urgent and high priority.

    So I don't understand this delay. If your condition is so rare, I seriously think your GP or consultant should be referring you to a specialist hospital such as the Royal Brompton Chest Hospital in London, not waiting for one surgeon where you live. Please call the BLF helpline - their nurses are brilliant and may have good ideas to help in your situation. 03000 300 555.

    I hope you can get some clear information about this and that that will give you at least some measure of peace.

    Take care :)

  • Hi, Thanks for your reply. I have done a lot of research and have come across Emphysema many times but it has never been confirmed by a doctor as of yet. I saw that all my symptoms were the same as Emphysema but then again, most lung conditions do have similar symptoms. I have been calling and calling the surgeons secretary and have recently been in contact with my GP who is disgusted with how they are treating me. As I've said the problem is that they want me to have the surgery where I am (in the Midlands) as then the recovery can be from home and they don't want me to make a large journey from somewhere like london. There is a huge strain within the hospitals in the Midlands and I am unfortunately seeing this myself. The waiting list was apparently 1-2 months, but I have already waited this and have been promised the operation in February but I'm not counting on it.. So from now until then, I'm feeling like I have the lungs of an 80 year old smoker, not a 21 year old haha! Thanks for your help, I will definitely pester then more and will try that helpline!

  • Emphysema tends to be a condition of older people caused by smoking, genetics and/or pollution with the damage developing slowly over many years before diagnosis occurs - and bullae are a regular though not automatic feature, i have bullae myself.

    A1A is caused genetically by a missing enzyme (think its an enzyme) and it often explains why much younger people have emphysema type symptoms. There is a blood test to show if this enzyme is missing so if you haven't had it you could ask your doctor to refer you for that if you haven't had it yet. The BLF helpline would be able to talk to you about this too.

    Sorry if I'm pushing too much info at you Claire but you seemed to be expressing frustration about not having more information. But i stress of course I'm not a medic and the above is purely a suggestion.

    You say "they" want you to have the op near home so you can recover there too. My question to you would be - what do YOU want? It might be worth thinking about whether you could get the op done quicker away from home by top class specialists who are used to rare presentations of lung disease. They can refer you back to your home consultant for follow-up. The midlands is not so far from london - i grew up there and my father was constantly in the Queen Elizabeth hospital throughout my teens. It is a good hospital, that i know!

    Again the BLF nurses would be useful to talk to about the advantages of both possibilities.

    I do hope you get some speedy resolution Claire - this really isn't fair on you and it seems very disempowering if they are withholding information just because you are young.

    Please let us know what happens. Very best, jean

  • Thankyou for all this great information, it really is a help! Any information I can get is helpful so that I know more about what is actually going on in my lungs. I will mention this blood test to my doctors when I next visit them as that would definitely get down to the problem quicker than it seems to be happening. The only blood tests I've had is all the normal FBC's and thyroid which all came back okay.

    I'm in two minds about this operation. I would love to have it asap and be referred somewhere else but then again, I wouldn't like to not have my family and boyfriend there all of the time and it would be much more stressful. I will see what the consultants secretary says to this letter my GP has sent and probably make more of a decision then. If it was definitely this month, I would most likely wait as it would be a very long journey back after I had an operation. Thanks for all your help!

  • A pleasure! good luck :)

  • Good Morning Claire. I am one of the sleepy heads. You've already had lots of advise & I can't think of anything to add so just wanted to say hi & keep in touch this is a one stop shop information jokes. Humour , support, the gifted, the nutty all in all a great bunch of people & there's nearly always somebody about with a kind word to keep you going. It is really scary not knowing what is wrong and the waiting is awful. Thinking of you sending positive thoughts and prayers I will light a candle for you. Nan

  • Welcome Claire, I know what it is like to not know what is wrong and can the docs do anything. It is the worst place to be. The only thing I can say that came out of 2 years of worry is to try and live every day as if it is the last day. I was in a miserable place and thought the worst for about 6 months and then I realised I was wasting my time and my families time by negative thinking. I started to just thank the guy upstairs for the days I did not feel like hell and it just made me and everyone around me feel so much better. I went through a stage where I felt abandoned (sounds just like you) but I went to my GP who was really supportive and told me my rights. I found once I took control I felt more positive. I do not know whether this will make you feel better (I hope it does) but take care and do not stop posting blogs as we do want to know how you are doing. Chin up and if you can and feel up to it, do one thing you will enjoy today. Maximonkey

  • My lungs collapsed in 2008 I had 2 chest drains and was having extraction with needles as well. I also had empyema which meant me on an Oscillator for 10 days ( unlikely with you). I was also found to have a paralysed diaphragm. So if you are struggling for breath when you bend over might be the shadow if so. I have also been found with Pulmonary Hypertension which makes you very SOB.

    You may not have any of these but always worth asking the doc?

    I wish you well.

  • Hi thanks for telling me your story. I do find when I bend down that I struggle for breath a lot so it could possibly be something to do with that. I definitely will be booking an appointment with the doctors so I can find out more. He has contacted the hospital also so hopefully I will find out my operation date soon!

  • Hi there and welcome, as everyone has said this is a great sight, and if you phone the team they will talk things through with you. Everyone has a different story to tell, mine is similar to yours in that I was 16 and after years of ignoring my many breathing and coughing problems the medics realised that I had a collapsed lung. They tried everything for 2 years to get it reflated, and eventually I had the lower lobe of my lung removed, and although it sounded scary, it was definitely the best thing, as that was 44 years ago, and although I have other scarring on the lung I have had quite a fit and healthy life. Like you I am a non smoker, and apparently none of my illness is inherited, despite most of my dad's family having serious chest problems. It is difficult not to worry, I am sure we all do it, but hopefully with youth on your side it won't be long before you are back to feeling on top form again.

  • Thankyou, I really appreciate all this help! I also ignored my breathing difficulties for years and put it down to being unfit, even though I'm very skinny and used to be quite fit. I'd say I first experienced the breathing difficulties and constant bad coughs since high school but I never did anything about it as I thought it was normal.. I will be happy with anything that they can do for me, whatever they say I'll take at the moment as I can't imagine having this condition untreated for any longer at the moment. I can't even walk up the stairs without getting out of breath! I'm glad you've managed to get your health under control and have lived a more healthy life, I just hope I get seen soon!

  • Hiya.I'll start by saying I'm Alpha-1.

    Alpha-1 has many strains ..... some deem you as simply a carrier, others can affect your health quite badly, usually with emphysema-like symptoms & other complications, including liver problems. The start-point is to establish if you have Alpha-1 .... & you can do this very quickly indeed & without involving tyour doctor or hospital.

    Phone Rebecca Bray on 0121 371 3885 and ask for a test kit

    Rebecca works for the ADAPT Project (ADAPT (Antitrypsin Deficiency Assessment and Programme for Treatment) up at Queen Elizabeth Hospital Birmingham.

    Speak to her .... she'll explain everything & send you a test kit. Pop in to see the nurse at your doctors & ask the to take the sample .... It's only a pin-prick. Send it off & wait a couple of weeks ..... then you'll know.

    It took me 10-years before I found that out & got diagnosed.

    Good luck .....

  • Hi, thanks for all that information. That would be much easier than me waiting for these doctors to sort it all out. I'll definitely call up and ask for a kit. I have had breathing difficulties since I was a kid but was too embarassed to say anything as I'm very skinny and didn't want people to think I was unfit so I kept it to myself and thought nothing of it. So after around 3 years of almost being house bound it's definitely worth a try :)

  • Hi Clare, I have a large bulla with no Emphysema and it was caused they believe by a virus so maybe you have had a similar experience

  • Hi thanks for your reply. I do hope mine is something similar, but with this shadow and the doctors telling me absolutely nothing, it makes me feel like its something more!

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