What would you do?

I was diagnosed early this year with bronchiectasis and pseudomonas infection, after many years of serious chest infections. I am currently taking oral ciprofloxacin and nebulised colomycin.

For the last month or so I have been feeling better than I have felt for years, my cough is almost gone, I am not coughing up the thick green yeasty tasting sputum that I have been for years. I actually believe that the pseudomonas has been beaten.

The problem in my mind is that the medical people around me seem to have very little interest in my condition, to the point that since my discharge from hospital in March this year I have had no contact with my doctor or the consultant that diagnosed me.

Should I tell my doctor that I am feeling better and risk being taken off the antibiotics and not be able to get back onto this treatment or just be glad that it's working and carry on?

What would you do in my situation?

Cheers.

7 Replies

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  • Are you under a respiratory specialist? if not you need to see your GP straight away and get a referral to see one. as with bronch & Pseudo you have to be in a consultants care . Its possible you have totally eliminated Pseudo but its unlikely its gone for good, and it may reappear when you next have an infection( sorry to have to tell you that) but as you neb Colomycin and can tolerate Ciprofloxacin you will be able to keep it well under control. You also need to try to get onto a PR course so as to learn as much as you can about keeping your lungs clear.

    But FIRST step, get a consultant referral .

    You will learn a LOT about helping yourself to stay free of infection from this site , if you search through previous threads

    Welcome to the site

    Sohara

  • You're certainly on the proven best treatment for pseudomonas, so at least the consultant did that for you. From what I've seen here appointments with consultants are like gold in the UK but surely you should go to your doctor for follow up. How are you getting your meds ? Do you have a repeat prescription ? You should have a few sputum samples testing negative for pseudomonas before you are taken off the treatment. In my case the consultant said to me one month's Cipro and Colo would get rid of the pseud and it did. Unfortunately, I had another infection that wasn't cured so after Christmas I was put on Colomycin again and I'm still on it to hopefully keep me safe from those weird bugs for a while. It's great that the treatment has worked so well for you but IMO, you should not be taking Cipro indefinitely. But by now you probably don't need it anyhow and could get by with the Colomycin alone.

  • Hi andyhax. Unfortunately, once you are colonised with pseudo, you tend to remain colonised with pseudo. It's just that the numbers can be brought down too low to be picked up in the lab test. From time to time they have a party, do lots of reproducing and give us problems. As Billiejean said, you are on the definitive treatment for it. Also, as she said, you cannot stay on oral cipro long term. The use of nebulised drugs long term is common. I am on ceftazidime, some are on tobramycin. You can also take azithromycin three times each week, long term. It depends what keeps each patient well. You need to go to your GP. Find out what letters they have had from the hospital. Then tell your GP that you want a follow up with a consultant, preferably the doc who put you on this course of treatment. Then you should be part of their patient base with access to their secretaries and an appointment at least every six months. If you feel ill and your GP isn't treating you succesfully you then phone the consultant's secretary and persuade her to put you in on an earlier appointment. Bronchiectasis patients need close contact with the consultant who tells the GP how to treat you. Bronch is very complex and varies between patients. GPs are not trained or qualified to treat it without specialist help and because it is relatively rare they don't get the experience.. Once you have your consultant you will feel more secure and your GP will have support in treating you..

  • Thanks for all the great advice, looks like I'll have to get over my male aversion to "bothering the doctor" and get on with my treatment.

  • I have sent you a pm Andy, I hope you do go to the site, it will help you so much

    Love Sohara

  • An amazing coincidence yesterday.

    My doctors receptionist rang me up yesterday morning and told me I was due for a COPD review appointment.

    I told her that I don't have COPD but do have bronchiectasis, but would love to have time to discuss it with a doctor. The result is that they don't have a double appointment available at any time convenient for me at the moment, but if I ring within the next couple of weeks they will get me one.

    Any ideas out there what I should ask, or ask for that would help?

    Cheers guys and Gals.

  • In my opinion, you definitely need a referral to a Specialist in respiratory care. you also need to ask if you should still be on Cipro. Your GP should also supply you with sample sputum pots so that you can put a sample in whenever you get another infection. You also should have a 'rescue pack' of antibiotics ( in your case most probably Cipro again)

    A lot of GP's know very little about Bronchiectasis and treat it like COPD and it is different

    I am glad they have contacted you, good luck with the appointment

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