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.
So sorry to hear that you are suffering with many things at once. Like Lesley said, and I agree you need to be getting more help with your symptoms.
Hope you can get some relief and have a reasonable quality of life.
Hope the support you can get from others on this site will be of some comfort too. You are not alone.
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!!
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 Lesley, not sure what is happening here as your reply to me about Australia is meant to be for adawoolsey. I live in Greater Manchester too, but no hills around here.
Regards
Stella
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 stella,
we can all read everything, I am sure it is irrelevent, but sorry if I didn't put your name on the note. I know we all receive all the notes if we have visited the site.
All the best
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.
Yes Stella, I have had this happen many times and by now have become used to it. There are many way in which it can be dealt with such as major antibiotics, intense physio and washout by flexible bronchoscope. I wouldn't be surprised if you are offered a bronchoscopy to take a closer look and to take samples of the gunk. It is then that it can be suctioned out and the area washed free of stuff. A bronchoscopy can be a daunting prospect but trust me, I have dozens and they are quite simple and not in the least painful. You will be given a sedative and some painkiller via an I/V which can be topped up as required. Your nose and throat will be sprayed with a local anaesthetic. You wil feel little or nothing and most people drift off into a jolly twilight world and remember little afterwords. I tend to refuse the I/V drug because I want to be fully aware so that I can see the TV monitor. You seem to be in good hands so I would put my trust in them. Good luck!
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.
I live in rural Argyllshire in Scotland where the air is as clear as can be but I still have my problems but of course, I spent much of my life in the big city amongst the fumes and dust so I suppose I shouldn't be surprised that my lungs have got worse.
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???
Hi, I am feeling alot better now. I last had a bronchoscopy about 10 years ago.
I am due to go to the Chest Clinic on the 12th August, will let you know the out-come.
Thanks for your reply and helpful comments.
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.
My neurologist told me that MS, inflammatory bowel disease, dry eye and that awful reflux are all connected in some way but it not is not fully understood why or how. It's odd that you mention warts, lately I have been driven mad with veruccas for no good reason. I am also plagued with acne which at 63 is quite annoying. There is also a condition that many of has called, tracheobronchomalacia or damaged airways. I have problems with swallowing and that's another thing, a huge goitre suddenly appeared in a routine CT scan. Rather than sticking out of my neck in the usual fashion, it has gone down behind my windpipe and in front of my left lung. And yes, you guessed it, yet another autoimmune disorder. Itis impossible to say how things will be for you, quite often when I get talking to fellow patients in the hospital waiting area, I have conversations with fellow sufferers and it is quite suprising how differently people are affected by bronch. Some have a slight cough with no other problems and some of us are very ill. It's the luck of the draw but think positively and try not to get down about it all.