Bronchiectasis Newbie

I'm new here....I have recently been diagnosed with Bronchiectasis after a rather unpleasant year health wise.

It started at the beginning of the year with recurrent fevers but no other symptoms. I have a great GP, who ran hundreds of different blood tests, abdomen scan, X-rays etc. In June (actually on my birthday!) I had a funny turn when getting up in the morning, nearly collapsed, flashing lights, blurred vision and spinning sensations, to cut a long story short, not a TIA but caused by fluctuating blood pressure. At the beginning of July, I went down with what the doctor thought was bronchitis, ten weeks later and I was no better....I was then referred to a respiratory consultant. I was given a 4 week course of antibiotics after the CT scan and sputum test showed the bug that was assaulting my lungs. I am still waiting for the results of various blood tests but one test has shown that fungal spores are not my friend, so I will have to have various inhalers forever more. I am back on antibiotics again which I find very annoying as I only have had a week off them! I am doing my breathing exercises twice a day at the moment.

I feel a little in limbo here, I am not sure what the 'do's' and 'dont's' are. Nobody is able to tell me why I am getting the strangest, weirdest feeling in my chest and legs, does anybody else get them? I also can suddenly feel really hot, sometimes it's because I have a fever, sometimes not and I feel constantly exhausted...is this going to go on forever?!

As you can see I am feeling a little sorry for myself, any advice would be great fully received xx

13 Replies

oldestnewest
  • You are allowed to feel sorry for yourself, as long as you don't keep it up for days and days :) You need to keep regular touch with your surgery, take the medicine they recommend, TRY not to worry. I have had Bronchiectasis for a few years and have the pleasure of suffering from Emphysema as well (lucky me) :) Honestly, once you get settled with it you will be fine, and look forward to the rest of you life. Good luck :)

  • me too bronchiectasis and emphysema pretty rubbish at first but 2 + years on coping with it

  • Thank you Louisiana, I am normally a positive person but when after only a week I needed a further course of antibiotics and have so much gunk on my chest, plus a chronic cough, I have been wondering if this is now my life!

    You sound so positive having emphysema as well cannot be easy. My mum suffered with it (COPD), but she was very naughty and continued smoking up until 3 months before she passed away!

    Thank you again 😀

  • try asking your gp or pulmonary physio for an acapella device to help remove mucus its a revelation

  • Welcome jos, many Bronch sufferers on here so you will soon have more replies. Take care xxxxx

  • Thank you, I have kind of felt I'm the only one with it, so having support from others will be good xx

  • Hi Jos,

    one of the old,lifetime bronchs here. Welcome, there are several of us who have lived with bronch forever, have led full and active lives and we are stlll keeping on keeping on.

    First of all, do not think that any exacerbation in bronchiectasis is going to go away with a week of antibiotics. Whichever the antibiotic given ( and you need a sputum test to establish what the bug is) it has to be a high dose for at least 14 days. If it doesn't clear the infection, go back, get another test, you may need a different antibiotic for longer. Bronchiectasis is not the same as community bronchitis in a 'well' person. It needs the sledgehammer approach and too many GPs are fixated on govt instructions not to oversubscribe abs in the general population.If the GP is at a loss, go back to the consultant.They will tell your GP what to give you and for how long.

    Your post sounds as if you still have a pretty bad exacerbation if you have a fever, unstable blood pressure and wobbly legs. You need to get over that first. Get the abs you need for this infection, get the fluid off your lungs, drink plenty and rest.

    Most bronchs always collect sputum in their lungs, whether or not it is overloaded with a particular bacteria.

    This Is Important

    Whether you have an exacerbation or not it is vital that you get the fluid out of your lungs. Every day-every day. Very very important when you have an infection. If it stays there the bugs have a party, do lots of reproducing and no antibiotic is going to be effective for long.

    We can give you lots of advice on lung clearing, exercise, diet, dealing with hospitals and GPs, moaning-yes, it's acceptable

    Meanwhile remember that you are the same person that you were before they dropped this name on you. Bronchiectasis does not come on overnight and so you have probably had it for a long time. You just need to grab hold, shake it by the neck and get control. xx

  • Brilliant advice thank you, I am currently on 14 days of my standby antibiotics. The sputum test came back as clear, but my sinuses were also playing up so I am guessing they may have been infected. I am doing 2 rounds of my lung clearing exercises a day, but my cough is still chronic and I am bringing up mucus all day long. While I am still feeling wobbly, should I be doing any exercise other than my lung clearance ones? I am fed up with resting, I have done so much of that and I feel as if I am growing in size daily by being lazy!! My consultant has said that if I am not feeling any better by the end of the week I am to do a further sputum test and I may also need to be on a prolonged course of antibiotics.....oh joy! Thank you again xx

  • It sounds as though you are doing everything right jos. Whilst you are poorly just concentrate on doing your clearance exercises and moving around the house. Try to make your own food and just keep pushing it down, whatever you fancy. I'm glad that you are in contact with your consultant. Long term antibiotics may be a solution but also you may have a rogue little bug ( these tests are notoriously inaccurate) and he may decide that you need some IV antibiotics to knock it on the head. followed by long term oral or nebulised antibiotics or a 'wait and see' approach. I am due for a couple of weeks IV as an experiment to see if doing that three times each year will keep the pseudomonas down. We are all different and respond in different ways. That is what makes it so difficult for our medics. You may have read my post today about my poor consultant.

  • Jos, it has just occurred to me that you may be battling a virus. This makes it very difficult for us to distinguish between one of those and a bacterial exacerbation. Also, strangely, the cough with those and the difficulties with getting the sticky stuff up is worse than the bronch. It does eventually go back to 'normal bronch' I suggest that because I am going through it at the moment.

  • Yes very possibly a virus and I can blame one of my twin grandsons for it if it is...He is always snotty! But just 2 days after finishing my months antibiotics I saw my consultant and I was still wheezy, he wanted the sputum test done, but to wait a clear week off the abs before I did it...I really wasn't feeling brilliant in that week, which made me wonder whether the original bug had actually cleared. I will do another sputum test early next week, so watch this space.

    I have had a quick look at your post today, you have a nutty consultant! How many years does it take to speak and understand the respiratory lingo?!!,

  • Hi Jos, good to meet you. I have different conditions to you (Pulmonary hypertension and systemic sclerosis [scleroderma]) but wanted you to know you are not on your own. You are amongst friends here and I'm so glad I found this forum. Lots of great advice and support when you need it as well as great general chat.

    When you are first diagnosed it can feel rather overwhelming; the constant medical appointments and health issues are very wearing, but things do get better. My meds have helped me enormously despite the severity of my condition. Life does go on and there's lots of living to do !

  • Hi there, I'm so pleased to have found this site too and hope to make many friends on here and in time be able to offer advice to others....take care xx

You may also like...