First time posting but nervous

Sorry this is my first time on here, I'm having a CT scan next week to determine that I've definitely got Bronchiecestis. I'm bit worried about it I've had cough for 3 weeks it's getting better but still hurts and I've got lots of mucus. Worst thing is I feel so weak, alomost like jelly really, I'm 40 and until 3 years ago when I had pneumonia I was very healthy. So it's a shock really as I'm not overweight at all, eat healthily and don't smoke, although I did when I was younger. I think I need more cardio exercise as I generally just do walking. I just want to start feeling better so I can enjoy life again and have fun with my kids, I've been so useless lately and feel like a rubbish mum.

Is it normal to feel so tired and also I really struggle with basic tasks, I feel very overwhelmed like everything is complicated, and have difficulty concentrating, which is terrible with work!

Thank you so much for reading, as I'm feeling very down and rather scared at the moment.

20 Replies

  • Don't be nervous Shancock welcome some lovely supportive and understanding people on here iv Bronchiectasis also please try not to worry because with medical help hopefully you will be able to enjoy life,I never smoked either and yes the fatigue is bad but please stay on this site and you'll be amazed by some of the stories by people in similar way..Ger 😁

  • Thanks so much I've been so worried so much going through my mind like never getting better or if it's cancer, so much goes through your mind, it makes it better than talk x

  • Hi

    I’m 42 and a Mum of two boys with bronchiectasis and heart failure.. I still work almost full time but I do get exhausted and I am frequently ill however things are getting slightly better as I’m now on several medications and I’ve also taken up swimming which I find helps a lot! I too have never smoked and eat well but I had cancer when I was 27 and my problems have all been caused by the chemo and radio therapy . Don’t despair everyone on here is really nice and if you keep reading and posting on here you will get some fab tips to help you xx

  • Thank you so much, I've been so worried not been able to sleep thinking I've got cancer and so much going through my mind. Talking makes things seem better,

  • Try not to worry as my consultant said to me at your age the likelihood of lung cancer is very tiny and to be fair it sounds like they are looking after you I had my cough 2 and a half years before I finally got referred to the hospital!

  • Oh god so sorry, it's only as I've gone private thank god my husband has Bupa with his work, or who knows how long I'd have to wait. The consultant is lovely only saw her today and I'm already having blood test and scan next Tuesday then follow up with her next Friday. My GP is rubbish, think most are really. When I had pneumonia they told my I had flu and just rest then next day I was in A&E!

    I have 2 kids and my son is severely disabled so I care for him and he can't do anything for himself so it's very tiring, I love it but it's tiring although we get some respite I'm mainly exhausted and I work 5 days at week at an infant school, usually when I'm well I cope fine but right now I'm not managing well. Very snappy and not myself also very forgetful as I'm so damn tired but almost too tired to sleep! I need to get well, I really haven't got the time to be sick, too many people depend on me!

  • No wonder you're exhausted!!!!!!

    Anyone would be 😃. Wishing you all the best for next weeks scan. Once they know what you're dealing with the sooner you can start managing whatever condition you have.

    It does take a very very long time to get over pneumonia. Be good to yourself and rebuild you're immune system stating tomorrow.

    P x

  • I too work in a primary school and I know what you mean I’ve been snappy and tired and forgetful.. I find I mainly have to rest as much as I can each weekend and school holidays just to keep going.. however it sounds like that will be hard for you with your son. It sounds like your consultant is fab so hopefully you will get some answers and some help soon x

  • Just Want to send best wishs to you for next week i can empathise with you about GPs but things are moving for you now which is good news take care .

  • Do try not to worry.... I worried about lung cancer, and so did my GP, , but it wasn’t. I am really lucky and have the best GP in the world but if I had been left to his colleagues goodness knows what would have happened. It sounds like you are in capable hands. Keep us up to date.

  • Will do xx

  • Hello Shancock and welcome. Firstly, don’t ever be sorry. We all know how scary it can be to be feeling horrible and not knowing what it is and we are here to support you. Secondly, where did this fear of having cancer come from? You say that you are having a scan to confirm whether you have bronchiectasis. Your symptoms are absolutely typical of bronch which is not being treated or controlled so lets concentrate on that.

    I am 67. I have had extensive bronch since I had six pneumonias before the age of five. I have had a full life, lived all over the world and still travel widely. I have worked, brought up two children and still volunteer at a local visitor attraction.

    Yes, bronchiectasis can wipe you out because your body is constantly on the look out for, or fighting infections in the damaged part of your lungs and airways. This is why it is crucial to manage it properly. That way you can have a normal life.

    It is absolutely essential at this stage that once you get a definite diagnosis you come under the care of a bronchiectasis expert. Most general respiratory consultants know very little about bronch but are reluctant to admit it. GPs know even less and need the guidance of the bronch specialist as to how to treat you.My main relationship is with my consultant and her secretary. I only use the GP as a conduit to supply my drugs.

    If the consultant whom you are seeing now is not an expert in bronch find one near you - they are usually based in big teaching hospitals. Take the name to your GP and insist on a referral. Do not take no for an answer.

    Bronchiectasis is very complex and we are all different. It is a naughty boggart and changes the way it behaves. Basically you need to get on top of it with a good daily personal management routine and antibiotics when it is having a party. You also need to learn to ‘read’ your body so that you can recognise when an exacerbation ( infection) is setting off. This isn’t easy and I still sometimes get it wrong.

    On a personal basis you need to keep to a healthy lifestyle, keeping up whatever exercise you enjoy and eating well.

    The MOST important thing is to empty your lungs of mucus every day. This helps to prevent any bugs in there from multiplying and making you more ill. Also you will breathe better and feel more comfortable. There is a cycle of breathing which will help you to do this. You can find it on you tube but a bronch specialist should have you see the physio who will teach you how to do it.

    The antibiotics which you need to fight exacerbations vary according to the bugs in there and can be delivered orally, by nebuliser or if you get really poorly by IV. I have only had IV three times. This is where the specialist’s advice to your GP is very important because bronchs need abs in higher doses for at least two weeks and most GPs do not know this. They tend to treat bronchs as if they have COPD and it is completely different. Our respiratory nurse can’t even say bronchiectasis!

    Finally, I’m afraid that we have to be our own advocates and vociferous in getting the care we need. I know, that is exhausting when you feel so poorly. Hopefully you have a good GP who will make things easy and a good bronch specialist.

    Well, I have given you so much to take in that I must have worn us both out.

    Don’t worry, you can have a good life with bronch. There are many of us on here who are the living proof.

    Good luck

  • I was diagnosed with bronchiectasis when I went to the GP with a persistent irritating cough many years ago. In many ways it was a relief to finally have a positive diagnosis (ct scan) rather than worrying about the possible causes. Once you have definitely been diagnosed there are lots of things you can do to help yourself. You can do research and many things you read are useful, on the other hand some things you read can be scarey. All I can say is that we are all individuals. I sometimes feel unwell but a lot of the time I can keep up with the best. Just pace yourself. On this forum there is a wealth of information and people are kind and understanding. Good luck and thinking if you Susan x

  • Just an extra thought. Most bronchiectasis specialists do not work in the private sector. I can understand why you have gone that route to get a diagnosis because your GP is such rubbish. Once you have your diagnosis a good bronch expert in the NHS is the best way to get your ongoing care. Unfortunately private insurance companies will eventually class it as chronic and refuse on going payment for xrays, scans etc which you will need as time goes by.

  • Dear Shancock

    You’ve had excellent advice on here , especially from the absolute expert littlepom and Knicho also has young children and works in a school and has and will completely emphathise.

    I was diagnosed with Bronchiectasis 3 1/2 years ago at 59 but now know I must have had for a good 2 years at least before that. Then it’s been a long journey during this 3 1/2 years with GPs lack of knowledge and dismissing it as ME, poor advice from 2 general consultants.

    I’v since changed GP and go to a consultant specialising in Bronchiectasis which means quite a journey as live in a very rural part of UK... both worth it though. New GP doesn’t know much but is at least supportive!

    Re tiredness, feeling rubbish.... totally understand!!! If you are fighting an infection or recovering then it completely wipes you out!!

    So follow littlepoms advice, post on here for support ( wished I’d known about it at start!) and above all..... be kind to yourself and not hard!! Easier said than done I know.

    You will have better times ... guaranteed... but knowledge, management, acceptance and loving yourself are the key.

    Big 🤗 hug xx

  • I totally agree with littlepom about being your own advocate. Most GP's and even consultants are not that great in managing bronchiectasis, so you really need a bronch specialist. I also wanted to add, thay through my own research I have found great relief in a product called n acetylcysteine. I works by thinning mucus and boosts glutathione levels. There has been trials on n acetylcysteine on copd and cystic fibrosis patients, but I believe there is a trial ongoing for bronch patients. All the best.

  • I agree with littlepom. My GP palmed me off for 4 yrs blaming my asthma. It got to the point where I was continuously sick and breathless. I don’t smoke and I’m 35, I was really down. Since being diagnosed this summer I make sure I ask questions and research. I tell the dr what I’ve found and want to try. I have lung physio at the mo, new meds and a rescue pack at home. I feel the best I have in a very long time, no infections since diagnosis. And yesterday I ran up stairs for my train!! No coughing fit, no dizziness!

    Once you have the correct treatment for you, you will notice a differnce x

  • Hi Shancock and a very warm welcome to you :-)

    Please don't get ahead of yourself re thoughts of cancer. You tell us the purpose of the scan is to give a definitive diagnosis of bronchiectasis.

    I totally understand how this symptoms you are experiencing are getting you down so, but once you have a diagnosis you will have a management plan and will learn how to manage your condition and will see an improvement.

    I have had bronchiectasis since babyhood at the start of the NHS and like littlepom have done all the normal stuff. There is so much we can and have to do for ourselves.

    Please Shancock let us know how you get on and the results of your scan. If you do have bronch we can give you more information and support.

    Some of the very best consultants with a special interest in non cf bronchiectasis are within the NHS.

    Glad you decided to post.

    Love cx

  • Shancock

    Good luck with your CT scan. Feeling tired and listless is unfortunately part of the disease but it is not unusual so don't think you are odd. Ask your GP to put you up for pulmonary re-hab, it will help to built you up again, but keep it up after the course to maintain the energy levels. Pace yourself to do the little things, take a little longer and they will get done, do not try to do too much.

    Keep safe


  • Thank you so much for everyone's advice I'm going to be offered all these things once the tests come in and the consultant is a specialist in respiratory conditions an she seems marvellous so I think I'm in good hands. Just need to b on the mend and hoping the cough will settle, it has got better slowly, just want the pain in my back to go. I always get it with a chesty cough, burning sensation in the middle back and aching too from where I'm coughing. I find warm water bottle helps and sleepy no sat up with ton of pillows!

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