Bronchiectasis /azithromycin , emphysema, transplant ....help

After a few good years on azithromycin I started to have an allergic reaction to them.My doc said it's too dangerous to continue taking them. Since stopping them in September 2014 I'm constantly in pain on my left side and keep getting infection after infection. Does anyone know of any other treatment to keep the infections at bay?. Unfortunately I've just been refused lung reduction surgery aswell due to the extent of my emphysema and bronchiectasis so it's looking like transplant list for me. I have been asked to go into Saint James,Leeds Thursday and Monday for cardio pulmonary tests and the scans with the dye injected. Could anyone tell me how the process works for the transplant list and does anyone know of anyone with rhesus ab negative blood that has had a successful double lung transplant? I have been told my blood group will reduce my chances of finding a match.

Lots of questions as usual.

I wish everyone a good day and look forward to some helpful replies :-)

14 Replies

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  • Hi Ineedair, I am on daily doxy. with clarith. and steroids for flare ups, which seem to have been many this winter! But they have kept me out of hospital. Doxy v Azi, seemed to have been my consultants favourite choice. Like you ops. are not an option. The down side of doxy. is that you have to be careful in the sun. Hope this helps a little. Keep breathing and smiling! Sheila Xx

  • Thanks sheila, going to see consultant again about new meds x

  • Oh soddit I'd just written a long reply and it disappeared before I finished!

    Anyway, here goes again...

    So sorry to hear what you're going through ineedair. Can't help on the transplant side I'm afraid but I'm going to make some suggestions as to what works for me to keep me free of infections (fingers crossed!).

    I've had bronchiectasis all my 64 years, taking lots of antibiotics over the years, and because of them I developed pseudomonas in October 2013. I was put on a course of levofloxacin which seemed to clear it, but in reality it never goes away. It's been a short sharp shock and I've been researching like a woman possessed how best I can help myself. The following is what's been working for me (so far and fingers crossed). Well.... I haven't had ANY antibiotics since the levo, even when my other half had a really bad cold in January and our present house is very tiny, so no avoiding each other.

    I started taking 2 gms omega 3 twice a day for inflammation. 2 gms Vit C twice a day to fight infections. Oregano oil capsules (these are antimicrobials). With last winter approaching I started taking 3 garlic capsules (AllicinMax) twice a day, and on the advice of their director I started nebulising with garlic liquid. This has been an enormous help.

    It's also important to take a good probiotic to put back all the good bacteria that's been killed off by the antibiotics. Raw Reserve is my favourite.

    I also exercise as much as possible on my mini trampoline. They're great as you can put in as much effort as you're able to and build up using hand weights to make it more intense.

    Of course it goes without saying that you have to keep your lungs as clear as possible.

    The next step for me was going to be hydrogen peroxide therapy but that's been put on hold because I'm feeling so well.

    I do hope this helps, or even gets you researching for yourself.

    Wishing you all the best

    X

  • Great news re: your improved health Moody Girl....did I understand correctly that you only have had one course of levofloxacin and the rest of the improvement has been the supplements you are taking? If so that's amazing after a life time of Bronch

    I have always read that garlic is good for you...but at the moment I am taking SO MANY vitamins and supplements I could not take anything else..or I could be popping pills etc for half the day !! :) :)

    Its great to hear about someone who has managed to find what helps them....WELL DONE

  • Thanks Sohara. Yes you read correctly, only one course of levo which was Feb last year.

    I know what you mean about popping pills, can be very costly and strangely time-consuming counting them all out each mealtime. I'm going to try cutting down on some now that the winter's mainly behind us.

    Antibiotics are a necessary evil. They help cure one thing but another problem crops up. And I'm sure we've all read about the emergence of superbugs, so very soon antibiotics might not be effective at all. If we can help ourselves as much as possible using natural supplements and/or complementary medicine, then so much the better.

    Cheers for now

    X

  • Oops forgot to mention that I also changed my diet and cut out sugar completely because I read that pseudomonas (and other nasty things) feeds off it. The beauty is that I've lost my muffin top which always bugged me. The down side is that I have to cook meals from scratch which can be inconvenient at times.

    Yes that's probably helped a lot too!

    X

  • Wow thats brilliant re the levo...don't think I have actually ever had that AB think I have had all the others though :) :)

    I personally cannot think that its just the Levo that has had this miraculous affect...it must surely be the supplements you are taking, are increasing your immunity to infections

    Whatever it is I hope it remains to keep you in good health

    The MAIN thing with Bronch is to cut out the infections ( each one causes some damage to the lungs)...I was having 2 a month nearly before I went onto Azithromycin...and now ( touch wood) I am down to one every 3 months which is a MASSIVE improvement

    Long may your good health continue MoodyG

  • Thankyou x

  • I hope you get the transplant you need Ineedair ..there are several people on this site awaiting transplant and I am sure one of them will be in to answer your questions...I personally don't think I qualify for a transplant....and I am not suitable for the valves either, so cannot really help you

    Good luck though xxx

  • How odd that you suddenly are allergic to them ... have they actually looked into it properly im no gp but that makes no sense what so ever.

    I have had that scan and its nothing to worry about they just put a cannula in and then inject the dye at the end of the scan,,,,it feels strange though you feel really hot inside and a similar feeling to weeing yourself is the only way to explain it.

    It took me a whole year to get to the point of an offer of getting on the transplant list and the fact your a rare blood group should actually go for you because there are less people waiting for it...the anti bodies are more of a problem if yours are high which mine were, i had 78 percent so have 22 percent of a match

    you have to have masses of tests first then if all thats fine they send you for a day visit to do more tests for the assessment then if thats fine you go back for 3 days for more tests.........so basically there are lots of tests

    i have copd and bronchiectasis and if i can help with anything let me know x

  • Thanks everyone for the replies, lots of great info as always. Mandy1365, I started getting rashes at first which over a few months got worse and i finished up with face swelling and head to toe hives or uticaria they called it , this was when they Said the azithromycin had to stop. Im definitely going to try some supplements, at the moment i am having vit c and ,lemon juice and manuka honey but i will definitely look into the other stuff.

    once again thankyou all very much :-)

  • Hi ineedair

    Really sorry to hear you have now become intolerant to Azith. Feel for you as I am intolerant to so many abs, Azith being one of them. Funnily enough I used to be able to tolerate many abs when young but have lots of probs with not only abs but also medication for inflam arth and lots of other drugs.

    I see you have appointments at Jimmys and wonder if you see one of the cf consultants. I do but they mainly do their outpatient clinics at Seacroft (my second home when I was little). Since finding you have an intolerance to Azith have they tried nebulised Colomycin or another nebulised ab? It would help to reduce infections but would not have the anti inflammatory properties Azith has. May be worth asking.

    I hope they can sort something out for you hun. It is a bummer when you cannot take something which you know would, could you tolerate it, help you so much.

    Please let us know how you get on.

    love cx

  • Thanks for this,im saving all these snippits of info to show my consultant. I am trying to stay positive :-)

  • I love this site and it's caring people, especially when I'm feeling a bit low. People like yourself give such good advice and it helps me to look upon my future in a much brighter light. I will definitely keep you updated. I see my lung consultant at Airedale general next week then the team at St James Leeds on 22nd of June. I must also add that i feel blessed that these docters are trying to help me x

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