I have bronchiectasis and was diagnosed approx. 35 years ago.

Hi Lesley, thanks for your concern, but it was another sufferer called supercough that is having the problems. Supercough had replied to me.

Stella.

 

I have bronchiectasis in both my lower lobes and parts of my middle lobes. The white spots on the x-ray seemed to be over the top mainly and also some going down, looked worse on one lung than the other, although the new large round area, the one the radiologist thinks is full of mucus, I dont' know where the exact location is, only know it is in my left lung, will pay more attention now on my next Clinic appoitment and ask more questions when I go for a further x-ray.

My bronchiectasis is diffuse, ie all over both lungs. About 40 years ago most of it was localised in the lower lobe of my left lung and so I underwent a lobectomy which is removal of the lobe. Over the years it has got much worse and there is little can be done because my lungs are colonised by pseudomonas. 

Hi supercough and stella: my bronchiectasis is localised in the upper lobes of my lungs, which are attached to the airways. They cannot perform a lobectomy because it will result in removing my whole lungs. I suffer pseudomonas when infected otherwise its just laboured breathing. Seems we are all suffering badly, but since I am only 49 then it is nice to know I can live into my 60's and 70's like you both. Keep well & good luck, thanks for the chat.

Hi,

Make sure you try the physio'...flutter etc; having said that, if I have a lie down after lunch, I can bring up quite a lot without the flutter.

The specialist is giving me a break from antibiotics for the summer and we will see how it goes. I am quite lively ...when not tired...mornings are best, I can walk 2 miles...when not tired...one lung is quite 'bunged up' but keep a sense of humour I find, I am in my 70's also and doing quite well.

A week in the highlands of Scotland was excellent, lots of clean air, it was beautiful and the amazing scenary lifts the spirits.

Blessings,

Lesley

Well you give me hope, when I am sick, I worry if I will last but it's good to speakw ith people who are in their 60's and 70's and doing "OK" or well as can be expected.

I love my flutter valve, cannot live without it! I also do the gym 2 or 3 times per week as well as my walking, which essentially have changed me for the better (who knew, I hate walking) even though it's not easy.

So far this winter, few infections but I'm on daily antiobiotices just to see if they stay away.

I may come to Scotland one day (I am in Sydney, Australia) so it'd be nice to go walkign with someone who can appreciate the number of breaks I need to take!!

Hi Sdawoolsey,

wow!...Australia, how wonderful...perhaps the blue mountains would have clean air. I live near Manchester in a suburban area, on the hill side...I really think the hills help with exercise.

My husband and I have also had a holiday in Wales which was good.I have had a rough time, but this summer has been so good and I feel so well.

Blessings,

Lesley

Hi, I have just been diagnosed with pseudomonas and the consultant has asked if I would consider having part of the my lower left lung removed.  How did you cope with that if you don't mind me asking??? Did it reduce your level of fitness, breathing etc

First of all, it is good that your bronchiectasis is localised and not spread across your lungs. My own situation was that the largest area of damage was in the left ower lobe and so as lobectomy was performed. Bear in mind that this was in 1973 and over 40 years ago. In those days, such surgery was still quite tricky and involved a lot of rest and recuperation and my hospital stay was over 8 weeks. I never really recovered from the op and and the surgeon bungled it and 2 hours after I was in recovery I was rushed back into the theatre again because some stitches had given way.

Anyway, whilst my left lung recovered, the disease spread all over the right one to the extent that no further surgery was possible. Nowadays, a lobectomy is a very routine op and recovery is very swift indeed with most people needing no longer than a week's stay in hospital. You would also be offered rehabilitation and physio to get both lungs working back to normal. You can function perfectly well with one lung let alone with the loss of a lobe. You will be on I/V pain relief from a little machine (driver) that you can adjust yourself to ensure that you are in no pain. 40 years ago pain relief had to be administered by injection each time and you were limited to 4 injections per day which in my case was not enough.

If I were in your shoes and knowing of the advances in lung surgery, I would go for it. It is still major surgery but the techinques have changed out of all recognition and you will be suprised at how quickly you will recover. Everyone one is different but you should be back at work within about 4 to 6 weeks and you wil feel better. You won't have any pain from the wound because the edges will be numb and the stitches will be mainly staples with disolvable internal ones.

Discuss all this with you specialist if you have a questions and have him tell you what to expect during and after the op. The very best of luck to you.  

Unfortunately, those of us who have the disease for a long time will usually develop resistant pseudomonas which is a really difficult thing to deal with. I am now at the stage of having to have last resort antibiotics which can know you about a fair bit. In January, my consultant who is an expert in CF and bronchiectasis prescribed me a drug called, 'Colobreathe' which is an inhaled version of colomycin. It was licenced only for CF but he and others persuaded the government to licence it for long term Bronchiectasis. I tried it for six weeks but had to stop because of severe coughing, thrush and tendinitis. It has left me with a new problem, I am now asthmatic and require constant inhaled bronchodilators. It is fair to say that I have many more illnesses and it isn't suprising that any new drug would have major side-effects. At my consultant is trying to help. In the past, some of my previous so-called specialists have sent me off with amoxycillin and an injunction to take lots of fresh air!!!

With pseudomonas it is essential to observe strict hygiene policies because it can be spread to other parts of the body. For a while I kept smelling sewage and thought that our drains were backing up and it turned out that pseudomonas is also present in my sinuses and is causing the bad smells. I bought a neti-pot and every day, wash out my sinuses and I am amazed at the difference it makes, there are no more post nasal drips that cause coughing and my sinuses are always clear.     

Interestingly, whenever I leave the clear air of Scotland and head for a dry climate like Spain or Portugal my lungs feel much better, perhaps the inherent dampness of Scotland is bad for me. It rains in Scotland.....often!

Thanks for your swift reply.  I have the pseudomonas and recently diagnosed and GP gave me a week of 250g of Cipro - didn;t work, then another week the same -- didnt work.  I then had 2 weeks of 500mg twice a day and guess what = didnt work.  Then saw the specialist who has started me on 1million Colomycin twice a day nebulised.  All I am reading so far that if you have any chance of eradication it needs the combi of cipro 750mg as well.  The specialist is away until 31st July and I see him on 5th Aug.  He did say he would look at IV as well as nebulised colomycin and that I would be hospitalized, as well as referring me to the surgeon.  Its like banging your head against a wall, NHS and very little info.  All I read is how the PA has a high percentage of mortality!!! Been very depressed mainly with NHS and the inefficiency of it all.  Hopefully the surgeon may be a little more informatiive.  I am feeling quite well at the minute and able to fight for myself.  Its the tiredness and falling asleep which is the main area of concern.  Luckily I do not work. Thanks for your response.  Really appreciated.  Can I ask how long you have had the pseudomonas???

 

I have had PA for at least 5 years and there have been times when I have been quite ill. Try to not to think or read about the PA statistics, everyone is different and if you have a good consultant, you'll be in good hands. Your GP on the other hand sounds like the one I had a while back. I had a major PA colonisation and he gave me the usual 250mg of Cipro because the sputum culture said that the PA was sensitive to it. Of course if he had sought advice from my specialist or even read the prescribing guidelines he would have known that only the maximum dose of cipro for a least 14 days would be any good. So, thanks him, a major antibiotic is of no use to me and from what you say, you too. When you see your consultant, ask him to give your GP prescribing instructions rather than letting him throw any old thing at you. When you have PA only the last resort antibiotics work and so great care must be taken.

The neb Colomycin is a real pain to do and it can make you very breathless. I have found that a couple of puffs of Ventolin or Atrovent prevents to coughing fits.

I have not had I/V antbiotics mainly because I don't want to be confined in a hospital for two weeks and in any case, I'm not sure they'd be much help at my stage.

Please don't get bogged down with worry over the PA, there are many folks out there who have it and don't know. The one major risk with it is pneumonia so make sure you get your annual vaccine and stay away from people with obvious chest infections or colds.

Also, whilst PA doesn't pass from person to person to easily, new born babies and people on cancer treatment are rather more vulnerable particularly if you cough a lot. Don't shut yourself away but just be aware.

You mention eradication and combination therapy. I have been told that people like us and those with CF seldom become totally free of the infection/colonisation. 

One final thing, make sure your specialist lays out all the possible COMMON side effects before you get the I/V therapy so that you can make a judgement. Hang in there, there are loads of us in the same boat. 

Thank you so much, you don't know how helpful and supportive you have been with your reply.  No one understands do they, only the ones with it.  My spouse is believing that all this will see me fine again.  I am sure it is a long long road, its a bit like a ticking bomb.  Weather fine at the minute dreading the winter.  So so mad and stressed with the NHS and lack of knowledge.  We have Freeman Hospital in Newcastle near me and I am considering, going there as their website seems so informative and supportive and frustrated with my treatment so far, although the consultant (when he is at the hospital) seems as though he knows what he is doing.  Still not convinced that Colomycin and Azythromicin is going to help me alone, and not sure why they have tried this first.  Thanks again.  Keep smiling!!! Its hard isn't it, but the other option is depression!!!!!

Hi there,

I am reading your comments with supercough. It's nice to know others experience similar issues. I was diagnosed with Bronchiectasis 18 years ago but have had it my whole life. You sound like the damage to your lung is at the base which is a positive out of a negative as the surgery will help with that.

I am one of the few where the damage is at the top of the lungs, the area connected to the bronchial tubes so surgery will not help otherwise the lungs get detached! And that wouldn't be good.

I think it's important to listen to your specialist, take in what supercough has said (who seems more experienced) and regularly exercise!

Since Jan 2014, I have been walking 30 minutes per day (granted it has been extremelyy tough but I push through the confusion, the giddiness & shortness of breath).

However this has made a remarkable improvement on my quality of life, my abiltiy to sleep soundly & breath easier.

What is your peak flow reading?

Mine is at 250.

I find infections, mostly pseudomonas of course, are best controlled with Klacid. I found cipro was not successful for me..

Also I find warmer, dry climates are much better. I live in Sydney so it's not too bad. I also avoid crowded areas & stick to the quieter areas of shops, parks, public transport if that's at all possible.

But you have to remain positive. Not sure on your health routine but its' also best not to be overweight (sorry I don't mean to offend).

Keep your head up!

Thanks for your reply.  I am not overweight or should I say I am not now, lost a lot with worry!!!!!! Not heard of Klacid, but I am UK.  With NHS you are mostly given drugs and can't request them!!! I have had two failed hiatus hernia ops which doesnt help because I cant blow very hard lest I hurt the hernia.  The pulmonary function tests were Ok apparantly if you can understand them.  I do walk for 30 mins but when tried an hour that was a step too far.  Unfortunately, our weather isn't as good as Sydney, but in May I was in Florida, and found it very humid and difficult to breathe.  Not looking forward to our northern england winters.  I saw my hernia specialist yesterday and he said to persevere for as long as possible on the anti biotic route, and not to rush into having the lung removed.  He didn't expand on that, but said it could take a long time to be rid of PA if at all.  Today my sputum is white and clear and I am 18 days into the neb cloromycin 1 mill units twice a day.  As supercough said, if I didn't know I wouldn't have bothered even going to see the Dr as it is clear.  But after the cipro 500mg twice a day, it was still yellow and still showed PA.  What I can't understand is if the sputum is tested and shows a sensitivity to a certain drug, why doesnt it work and clear it?? Have you asked that question.  I will on 5th Aug, because it doesnt make sense to me.  Thanks for replying.  In a gloomy place, just worrying.  Its good to talk to like minded people.  Take care, keep smiling and keep well.

Hello,

I too live in Australia, on the central coast but my children and grandchildren are on the Northern Beaches.

Where abouts are you? Have you found a support group in Aus?I have been reading with interest all these comments and treatments that people are using.

I have never met anyone with this ailment and now there is one in Sydney! 

I shall keep following with interest!

 

Hi there,

I live in Sydney, actually in Ultimo. I think bronchiectasis is more common than we think, we just don't have a forum or support group like this forum in the UK.

I have been seeing a wonderful Doctor placed at Royal North Shore. My god's send really since I was diagnosed 17 years ago.

Bronchiectasis is more common in older people - or so I am told - rather than younger. Although I am no expert, I am just familiar with people's reactions when I say I have it. General comments around the fact that I am "too young" but that doesn't appear to be the case when I read comments on this forum so maybe its the Australian weather.

Cheers,

David

Lesley, when you say your specialist is giving you a break from anti biotics for the summer,  do you mean a break from taking azithromycin ( or some other ab you take ALL the time)   or just generally not giving you any ab's if you have an infection in the summer?

Hi, I went to the specialist...it was a doctor at the hospital on his team...who said he thought I looked well, (don't people always say that) and that I could stop taking the azithromycin for the summer. I tried that, and started coughing more which is so embarrasing and put myself back on them and went to my own GP to tell him what I had done. He said ok to go back on them and to tell the hospital when I have a next appointment there. I only take the azithromycin, no other antibiotics. I haven't had a sputum sample taken for a long while so I must sort that out when I next go the the GP or the hospital. It is always thick and green. After all the advice I give out on this forum, I am lax when it comes to myself. It is interesting that neither the hospital or the GP mentions giving a sputum sample, then I forget to ask.

Incidently, I have discovered why I am so tired and have lots of nausea; I have been taking Carbocisteine 375mg caps' three times a day for months. I stopped by accident when I forgot to take them with me on holiday and the the tiredness and nausea stopped! so I haven't started taking them again. It seems all trial and error.

Thank you for your concern,

Blessings,

Lesley

After repeated infections, which had reached one every month..I was also put on Azithromycin...which was like a miracle drug for me, and I had a good 8 months without any infection.....caught a cold and it went to my chest as usual, so had to go bak onto normal antibiotics....just trying to now get back to the aziithromycin 3 times a week again....I had read that some people were told to 'take a break ' from the Azi in the summer months....but I was so happy on it I did not want to 'chance it'

I am like you have had bronchiectasis since a baby......next step for me will be IV antibiotics if the Azi stops working....

Thanks for replying Lesley,  its good to be in touch with fellow Bronchs, who's life has followed the same pattern really

I attend the chest clinic at the freeman in Newcastle and was under a Bronchiectasis specialist Dr. De Soyza. I have now been told I will see the specialist nurse from now on!! Had three or four bouts of infection since July and he has put me on a trial of Azythromicin and told me I will need checks on my bloods at 6 weeks and then 3 months to ensure I don't suffer from, Hepatitis. Wow cure one thing but maybe get something else. Also warned about possible hearing loss. Keep Doxyxycline in the house as a rescue pack but when an infection flares up I have to put a sputum sample in to see which Antibiotic is suitable for whatever bug in in there. So I start the rescue pack but then about 5 days later I may have to change to another depending. I notice someons saying they wouldn't stand for seeing a "nurse" and would demand a doctor. The nurse is very approachable and if I phone him he tries to help but feel a little bit fobbed off. Have no faith in my doctors at all feel they haven't got a clue about the seriousness of Bronchiectasis. Like someone said we know our own bodies but the doctors would argue black is white. They don't like to be told what you think you have wrong with you. I sometimes feel a little "lost".

Hi ..I found your letter very interesting.. The carbocistiene you mention... I take 2 tablets 3 times a day amongst other things .. from today I AM going to stop them.. for months I have felt like a zombie.so tired ,even in a morning i can fall back asleep...so going to stop them or may be wean myself off slowly. It seems you cut them out by accident,, so many thanks for your remarks/  katerina