Am I seeing my first deterioration?

Posted , 8 users are following.

Hi,

I was diagnosed with Bx around 2014 after noticing an usual 'lack of bhp' when climbing a hill on my mountain bike. Since then, I've just had a crackle noticeable at night - especially when lying on my left side. That is until I started with an annoying cough which began around mid-June and has stayed with me for 6 weeks so far with no improvement despite courses if Amoxicillin, Clarithromycin and now Doxycycline.

I had a chest x-ray mid-April due to a temporary bout of dyspnea, this was clear. I had a further chest x-ray in early July which showed inflammation and atelectasis in the left lung. The routine GP appointment concluded it was an infection and I should try Doxycycline.

In the last week, I've developed central and lower back ache and the cough seems a little drier and weaker sounding (clear mucus less frequent). Strangely, I seem to breathe better when led down and I don't cough until I'm up and about in the morning.

As a father of twin 4-year-old girls, I'm less blasé about my health these days and I'm worried this could be something serious as Bx hasn't massively affected me to date.

Can anyone relate to these symptoms and perhaps put me at ease? I'm a life-long non-smoker and I don't recall much if any exposure to asbestos. My lungs don't get a work out these days as parenthood has temporarily put a stop to my cycling hobby!

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  • Posted

    Hi there

    I was diagnosed with BX when I was 8. I'm now 51 and spent most of my life having infections and in and out of hospital but one thing I have always done is exercised. I have slowed down now compared to what I used to do but still remain active which isnt bad considering I have around 4 to 6 lots of ivs (intravenous antibiotics) File size is too biga year plus oral antibiotics. My advise is send frequent sputum samples off to see if you have an infection sometimes your body can become immune to them. Also get an aerobika breathing device which helps you get any mucus off the lungs. Take turmeric & black pepper capsules, high strength manuka honey and eat well. I cough during the night and when I sit up in the mornings I'm guessing sitting up means your moving the mucus about as you have been laying down all night. Both of my lungs are damaged through Bx but I still lead a full and busy life apart from when I have an Infection then I rest up until I'm well again. Do you live in the UK?

    Rachel

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    • Posted

      Hi Rachel,

      Thanks for the message. I live in Lancashire about 40 miles north of Manchester, yes.

      When I wasn't suffering from an infection (which doesn't account for much of 2019 so far!), I used my bike on a Turbo trainer in the garage for exercise after work. Really want to shake this off so I can get back on it!

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    • Posted

      Hi Dave

      I'm sure it's nothing serious. Like others say make sure you get a good pulmonary nurse to help you out and answer any questions you have. I go to a very good herbalist/nutritionist who has helped build up my immune system and I have noticed a difference. She practices in south Wales but well worth a visit. If you want her details let me know. Also if you can get referred to papworth or brompton hospital they are the best in the UK for lungs.

      Take care

      Rachel

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    • Posted

      Cheers Rachel.

      As soon as I know the score regarding my current plight, I'll be in touch for those details.

      I am an 'old dad' and I need to be able to keep up with my daughters as they grow up. I have no choice but to ensure Bx doesn't beat me!

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    • Posted

      By the way, I see people talk about 'flare ups'.

      How long do infections typically last in the lungs of Bx sufferers and are they always bacterial and respond to antibiotics?

      Sorry about all the questions!

      My cough is 6 weeks old so far and seems to be resistant to antibiotics.

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    • Posted

      I have 4 grandchildren and look after them at least twice a week for their parents to work so I no exactly what you mean!

      All the best

      Rachel

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  • Posted

    Hi, was your diagnosis of bronchiectasis upper lobe or lower lobe, I was diagnosed with upper lobe and therefore I find it easy to clear the mucus doing breathing exercises.

    I also like you had a seriously irritating cough when first diagnosed and found I needed steroid inhalers because of the level of inflammation. I think this illness affects sufferers in so many ways and it's hard to tell when we have an infection, I seem to get one every 5 months or so. They say to exercise which helps to keep the chest clear but as you say sometimes it's hard to fit in with your daily life.

    Have you got a respiratory nurse you can talk to for advice?

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    • Posted

      Hi Jules,

      Believe it or not, I was never told which lobe is affected!

      Until now, I've just got on with my life trying not to pay it much attention (I was told at the time of diagnosis that regular meds were not needed as mine was a mild case).

      No regular appointments with a nurse so far. The way it tends to work in the UK is that your Doctor refers you to a Specialist only when they feel your symptoms warrant it. I have pestered my Doctor and I will now be seeing a Pulmonary Specialist tomorrow afternoon. I want to revisit my recent X-ray result and maybe push for a CT Scan to 100% rule out malignancy.

      Thanks for your reply by the way.

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  • Posted

    Hi Dave

    Really wise to push for a CT scan, I was told I had asthma for 5 years because nothing really showed up on the x-ray. I have lower lobe bronchiectasis + 3 other things, I do believe I have had the former nearly all my life as I had either pleurisy or pneumonia every year since young. Now have an anti pneumonia vaccination a week or two after the flu jab and so far so good. Good luck with your pulmonolgy appointement

    Sue

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    • Posted

      Cheers Sue.

      I'm obviously hoping they reluctantly perform a scan after stating that cancer is highly unlikely and use it as a means of getting a closer look at the infection and Bx. We'll see what happens, but either way, I need answers.

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  • Posted

    Hi, are you seeing a Pulmonlogist? If not then you need too, I was told by my family doctor that I had Asthma, and for 10 years I was bening treated for Asthma and kept getting worse and worse and finally I went to see an Pulmonlogist and I got a lung biopsy and found out I have Pseudomonas Aeruginosa Pneumonia, a deadly lung infection

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    • Posted

      Hi Debra,

      I hope your PA is manageable / effectively treatable? Sounds nasty.......... and seems to be a 'clever bug' in so much as it becomes resistant to ABs, from what I gather from a quick google. It's a good job you found it when you did!

      I will be attending a Chest Clinic at the local hospital (my Doctor openly admitted they were no expert - hence this referral to a specialist).

      First of all, I want to eliminate anything immediately life threatening as the route cause, then after that (fingers crossed!), I'll then want to understand what it could be (MAI, PA, asthma, chronic bronchitis, etc.).

      My back pain behind a shoulder blade, lower back and side of ribs has come on over the last week and I'm concerned it could be due to a tumor.

      However, I think I read that Bx can cause this sort of aching pain, so it might just be 'normal'.

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    • Posted

      I had the same pain as you and it was from my Pseudomonas Pneumonia, I am keeping it at bay for now by doing Tobermyacin treatments and immune support but that can change and I can go from good to worse in 24 hours so I try to live my best life and take 1 day at a time.

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    • Posted

      The more I read of others' ailments, the more it dawns on me how lucky I've been to only have mild Bx up to now.

      I really hope your treatments continue to keep it at bay, I'm rooting for you.

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    • Posted

      I have BX and can't cough up mucus and because I can't move my mucus and Pseudomonas is in the air, soil, water, I think it got in my airway and in my mucus and spread to my lungs, now I blow into an acapella several times a day and that moves my mucus and clears my airways

      Report Reply

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