What's wrong with me: I received my ct... - British Lung Foun...

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What's wrong with me

MrsPotatoHeadToYou
MrsPotatoHeadToYou

I received my ct scan results in the post today which simply said the scan did not show any evidence of Bronchiectasis which has left me feeling a bit crap actually as I thought I was finally getting a diagnosis.

A bit of back story, I had pneumonia when I was 17 (just starting a very active career in the military) and have never felt 100% since as if I was not breathing as well as I was before, getting out of breath so much quicker, feeling fatigued and still coughing. I'd get about 3 chest infections a year but lived with it all thinking it was somewhat normal until December 2017.

Mid way through December 2017 I get a really bad chest infection and a cough that lasts about 5/6 weeks. I couldn't stop coughing and was bringing up a lot of yellow mucus and making me sick. I was in bed for about a week and a half over christmas. I got better but the cough and yellow mucus remained although not in the severity of which it had been.

Come June 2018 I had another chest infection which was the worst I'd ever had. Coughing up thick green mucus which could have easily filled a sputum sample pot in one day, coughing up blood, being sick with every cough, not being able to breathe clearly. At my worst, for a few nights a small dramatic part of me doubted I would wake up in the morning because it was just so hard to breathe and I'd wake up gasping for breath. My doctor only gave me steroids and an inhaler which did nothing but after about 6 weeks I was starting to feel well again.

I randomly stumbled across Bronchiectasis when googling symtoms in September at I was still coughing up a ton of thick green mucus and felt it was a perfect fit. I booked an appointment with a different doctor who kind of laughed at my google results but booked me in for an xray anyway. One day after the xray my doctor called sounding a bit urgent and said streaks can be seen behind my heart and on my bottom right lung and informed me she would send a referral that day.

I saw the specialist at the hospital not long after who booked me in for a ct scan which I had last week. I was so happy and impressed that we seemed to be moving forward and finding the answer so fast but now this letter today saying no evidence of Bronchiectasis can be seen has just put me back to the very start. Not a day has gone by in over a year that I haven't coughed and brought up mucus multiple times a day and I just want to know why this is happening. I don't care about the Bronchiectasis diagnosis, any diagnosis/answer will do, I just want to know why my body is doing this.

Also I don't understand why streaks were seen on the xray and supposedly not on the ct scan? Has this happened to anyone else

15 Replies
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I would suggest that you call the specialist’s secretary and tell her that you need to see the specialist as soon as possible because you are left without a diagnosis or treatment. You obviously need both. Your symptoms sound very much like bronch to me and I have had it for nearly 66 years. Sometimes these scans are read by people who actually don’t know what they are looking at. In any case, the specialist should not be relying solely on a ct scan to diagnose you when you have multiple other symptoms. Do check that the consultant whom you saw was a bronch expert and not just a general respiratory consultant because I’m afraid that the general cons know very little about bronch. I hope that you get to the bottom of it.

Ramy22
Ramy22
in reply to Hidden

I only just read this... as usual brilliant advice!

Yes, I too coughed for years after contracting double pneumonia, brought up disgusting stuff, was sick nearly every morning, felt terrible, chest pains...had xrays and antibiotics, hospital admissions , but there were no ct scans twenty odd years ago. Lots of suggestions of what was wrong , but no real diagnosis.

Then I was diagnosed as asthmatic, the discoloured mucus was said to be dead allergy cells ( or something like that) .

Strangely enough my cats contracted pneumonia too and ended up with a permanent cough and asthma.

After all those years I still cough, but the mucus is usually clear or white now, unless I catch another infection.

One new GP I saw arranged blood tests which showed I had an ongoing infection, and gave me multiple courses of ABs. It actually improved after I had a pneumonia jab , but that could have been a coincidence.

All I can suggest is keep fighting , even though you may find it’s hard to do when feeling ill, to get more tests on your sputum and a blood test too.

My sputum tests often came back clear, even though the stuff looked disgusting to me....I often wonder if bugs were hiding deep in my lungs, but that’s only my thoughts, no medical proof for that.

Good luck and best wishes.

Back to the GP

Hi MrsPotatoHeadToYou that’s just awful .. don’t stop there get back to your GP get another appointment for your consultant .. push push push for answers .. good luck and let us know how you get on xx

As a Bronchietisis sufferer and currently fighting a bad infection I too know the game.

One point that has not been made above is that the streaks on your lungs could easily have been left by an earlier infection causing scars.

Having said that I also agree with the above posts. Try to find a Consultant who specialises in Bronchietisis rather than just COPD.

Regards Rib

Before your next course of antibiotics Mrs P, provide a sputum sample that your doctor can attach a form to for testing what bug is in your sputum.

Definitely if you've not already got a follow up appointment, request one and request it urgently. discoloured mucus is indicative of infection and you sure don't want to keep getting those. This situation needs a diagnosis so that you can get the treatment you need.

If you are are in the UK give the BLF nurses helpline a call for further guidance on what to query and request.

Have you ever been tested for Alpha1 ? just to rule that out.

The Xray shows a plate of your lungs. The CT scan is more indepth and take photographes of horizontal and vertical slices of your lungs. The CT scan can indicate a more accurate diagnosis, even though Bronchiectasis was not present, something else should show. You may have received an incomplete copy of your CT scan results which is why you need a follow up appointment with the specialist consultant.

Hope this situation is sorted out for you very soon.

Best wishes Bkin

Hello Mrs P, ask for a second opinion on the scan. Was it a high resolution CT scan? I have had an MRI, a CTPA, and a HRCT incorrectly interpreted and all three cases abnormalities were found when a second radiologist looked at them. With the HRCT scan I very tentatively suggested a second opinion; and my consultant already had another radiologist in mind. Doctors — good ones —- are happy with second opinions. Your symptoms seem to be classic for bronchiectasis.

I can so understand how frustrating it is to have doctors saying there is nothing the matter when you know there is.

All the best

K

Thanks for the replies! I'm really greatful you took the time out to share your stories and give me advice. I'll give them a ring tomorrow and request an appointment and bring up bloods and sputum tests too. I'll keep you all updated anyway

Did they say your CT scan was clear or just that you don’t have bronchiectasis? Call the Hospital and ask them to talk through your results with you. I think you have had this advice already but I didn’t read it. Good luck... I hope it all gets sorted soon.

Ramy

Hi I was in your situation and I had no diagnosis. Same thing I got pneumonia and suffered lots of chest infections took antibiotics and steroids. I also had ct scan which didn’t show anything. It took them ages to finally diagnose that I had Bronchiectasis. In which time I got pneumonia again and had a thorax ct scan which showed I had it. Also they found I was immune to amoxicillin, which answered why I had all the multiple chest infections. Did you have a thorax ct scan? Have they tested your sputum to see which antibiotic kills the infection? It can be so frustrating to have no diagnosis. I just kept telling the consultant how ill I felt and he kept doing loads of tests. I hope you get a diagnosis soon and wish you well. Xx

Hi MrsP, all good advise given above, I can only add that you should push this until you have a diagnosis and be treated for it. It sounds like you still have an infection and unless you get the correct antibiotics it wont go. Good luck to you xx

Maybe a combination of things? I developed late onset asthma at 38 then bronchiectasis. Prior to both I used to get bronchitis! Maybe your lungs are damaged and mimicking the symptoms of bronch....you want to get to the bottom of it though so be persistent! Good luck!

Several responses indicate that a sputum test is essential and a sine qua non for a proper diagnosis. It is of course recommended standard practice at onset of infection for someone with bronchiectasis (and COPD I don't doubt). But sufferers should be aware that a negative response to a sputum test can be a false negative, so do not assume you have no infection (or thereby no lung condition) as a result of their being no bacteria, or just 'usual oral flora' identified by the test.

My bronciectasis consultant at Papworth told me that, though uncommon, a small percentage of people do not give any result against the regular two day culture sputum tests*. For four years post-diagnosis of bronchiectasis I showed nothing on any sputum tests despite having an average of three infections per year. Those like me have a greater chance of revealing what bacteria is attacking them by having their sputum cultured for 6 days. It was only when I went that route that I got a positive read (and I do not always get a read even on the 6 day test.

You can try getting a six day culture through a GP but it may be necessary to see a pulmonologist to get an order for a non-standard sputum test.

* Two days is the norm for a sputum test inquiry of lower respiratory infection according to UK medical laboratory standards, so the lab may resist such a non-standard request without the persuasion of a specialist's instruction.

Just another thought to add to your problems. I have had Bronchiectasis for the last 65 years so have a little experience!

During a recent hospital stay for IV antibiotics (3 weeks) my sputum went to the lab each day and all came back negative for infection. During my lifetime I would say that at least 75% of the sputum tests I have had came back negative for infection. So as someone previously said, just because it is negative does not mean there is no infection.

On another matter.I have had experience of knowing someone who had bowel cancer. He had three biopsies at different times which all came back negative and the third one was positive. Unfortunately, he died three weeks after the positive one.

I would suggest you speak to your lung consultant regarding your queries and concerns. He/She would be the best person qualified to give you a proper answer to your many questions.

Using Dr Goggle usually gives people the WRONG answer to what condition they may be suffering from.

There is lots of support and advice on these forums but nobody is qualified to answer the main question you ask and the medical issues surrounding lungs is too complicated to try and even explain the minor differences shown in X-ray or CT Scans.

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