Bronchiectasis & MAC

What a year! Just been diagnosed with extensive bronchiectasis, asthma, sinus disease and now, MAC. The latter is caused by mycobacteria entering the lungs. These mycobacteria can be found in anything from shower heads to swimming pools and is present in our every day lives. Unfortunately, for people with a weakened immune system and/or bronchiectasis, it is more difficult to manage. My 'MAC' has given me nodular growths, particularly in the lower lobes of my right lung although there are some (I think) in my left lung.

I'd just got over the shock of discovering I had COPD (which is the 'umbrella' bronchiectasis falls under) and only this week (on my 56th birthday!) received a letter from consultant confirming that the mycobacteria is 'avium intracellular' variety. I am having chest x-ray and ct scan in next few days and comparisons will be made with those that were taken 3 months ago. This will enable the consultant to determine if I need to start my 'anti biotic' regime - a triple whammy of anti-biotics for between 15 and 18 months.

I don't smoke (never have). I have an active lifestyle but since losing my husband I've been in decline with my health in terms of getting frequent/recurring chest infections. I have also felt more tired, particularly over recent months, and some days am shocked by the lack of mobility I can achieve. This is the hardest part for me because although in my mid-50s I am 'young at heart' and thought I had taken care of myself to a good degree.

Sorry this is such an epistle but I am disappointed at the lack of information on the web about MAC disease and bronchiectasis. In fact, in the UK there seems to be a bias towards mentioning that MAC occurs in people with HIV and AIDS. I don't have either of these! My MAC is because of weakened immune system caused by, allegedly, my lack of care for my health during the 16 months of caring for my husband and the inevitable grieving that I suffered afterwards.

I am intelligent and have a good grasp of anatomy, physiology and our bodies in general. If I'm honest, I am depressed at the thought of future with 'my MAC' and bronchiectasis. Is there anyone else out there who is only in their fifties with both of these conditions, as well as asthma? If so, I'd very much like to hear from you.

Nice to be part of a community of people that I can share this with.

Florence

22 Replies

oldestnewest
  • I have had bronchiectasis since 1972, having had my left lung removed in 1976. I have led quite a busy life working, activities such as sailing etc and developed asthma later on so I sympathise with you but try and keep positive. I have not been diagnosed with MAC, not heard of it before. Bouts of infections but I am 60 this year and feel reasonably well most of the time so keep your chin up and try and keep positive.

  • Hi Dwayne and Lowfell

    Thank you so much for your comments. Dwayne, sorry to hear we have the asthma in common. Yes, definitely have not got HIV or AIDS but here is the link for useful info on MAC - worth a read. It details about the relationship between bronchiectasis and MAC and I have the 'nodular' type,.

    maclungdisease.org/index.ph...

    Lowfell, I am pleased to hear you sail! I also LOVE sailing - considering doing some this summer! (Reasons to be Cheerful, Part 3!!)

  • Hi , I too have asthma and bronchiectasis,i also have emphasema,sinus probs , osteo arthritis and diabetes, i have had the bronchiectasis since i was 3 yrs old.I had double viral pneumonia when i was 3 and it left me with swyer james (or mcleods ) syndrome which is under developed lungs , only the lower left lung lobe is under developed but both lungs have bronchiectasis. I get about 8 infections a year now, at age of 57, and it is a real pain as i too am young at heart and adventurous. I have never heard of MAC,my breathing has deteriated rapidly since last october and although i feel worse the hospital say there is no change in my condition,i will look into MAC and see if they have heard of it and if it could be my problem xx.Am happy to be in touch if we can help each other, i belong to a C.O.P.D group here in Ireland and we try to help each other and anyone else we can. regardsx x x.

  • Hi Dinnyrayner

    Thank you so much for writing! I can't tell you how much better I feel to know that I am not 'alone' with 'this' stuff! Like you (never having heard of MAC), I have never heard of Swyer James/Mcleods syndrome). I was actually born in 56 but only had my 56th birthday last Tues (when I got last update on my health!) and thought I'd try to kid myself that I'm still only 55! Laugh out loud!

    My consultant rang me on Friday evening. She wants me to have x-ray and chest CT scan on 2nd July and will see me on same day. Dependent on comparison between scan and x ray of 3 months ago and ones taken on the 2nd and whether the nodules I already have are any bigger or whether I have any more nodules, I may then be put on the 15 to 18month regime of anti-biotics - 3 types in all. I feel like I'm living with a 'time bomb' as, realistically, I think that if I contract a bug (easy with bronchiectasis, asthma and MAC) that is resistant to all anti-biotics (also a risk, as I'm sure you know), I will basically be done for!

    My children are 32 (girl) and 31 (boy). I also have 2 lovely young grandsons from my daughter. I love my kids and grandchildren so much and it's hard to get my children to understand the potential risks of my condition. My son understands better than my dear daughter who seems to be, frankly, in a bit of denial.

    The consultant is fantastic - I am so grateful to her for her diligence, knowledge and 'beyond expectation' approach to my care. She knows I will work hard to maintain a healthy regime but is also down to earth and realistic in answering my many and challenging questions!

    I had whooping cough (age 2), 'double pneumonia' (age 5) followed by tuberculosis at the age of 5 (but this, allegedly, was in my 'joints'). These 3 factors all contribute a great deal to my bronchiectasis.

    Interesting to hear about the flu pandemic and although it doesn't fit in with the TB or pneumonia, it certainly is possible that there is a link between that flu and my whooping cough in terms of timing.

    We're a 'right pair' with our situations, aren't we? I also have sinus disease and reflux disease (doesn't sound 'bad' but, in fact, reflux causes stomach acid droplets to come up through oesophagus and deposit directly into the lungs - very bad for them too as lots of bacteria!)

    My regime is:

    Sterimar nasal wash twice daily

    Flexinase nasal spray twice daily

    Symbicort inhaler 2 to 4 times daily (double doses)

    Omeprazole x 1 every morning

    Carbocisteine (for mucus reduction) x 2 three times per day

    Measure peak flow when I feel breathing is 'laboured'

    Check temperature when I feel under par

    Don't know if this is helpful but it's quite a performance when I'm trying to work. I am currently self-employed and last winter (due to the recurrent chest infections and 2 stays in hospital), I did not actually work for 4 months! I still have a mortgage so this is a massive concern in coping with this lung condition and unpredictability of contracting infection and coping with periods of extreme fatigue. People not living with this don't understand sometimes - my friends often say 'oh, you will feel tired - it's because you need to slow down at your age!!' In fact, the challenge is that I really must fight the fatigue and keep exercising as this will build up my immune system and create more energy but it's a tough one when you feel so knackered. I also find that the fatigue causes me to feel really low and lack motivation - neither of which sit well with me as, despite nursing husband with the brain tumour, living with the bereavement, and all the other trials life puts my way, I am always known for having a positive and sunny disposition. I never want to show my fears, doom or gloom feelings or apathy when I'm having a 'fatigue' session as I think it could be a real drag for them.

    Really great to 'meet' you!

  • I am amazed that you're trying to work - full of admiration!

    I have a similar regime and have thought it would be good to get a part time job but only when (I hope) my health settles down a bit.

    I took drastic action when I got sick: I'd been running my own business and was so poorly then that I knew I couldn't carry on. I offloaded the business, let the little house in Hackney, and moved family down to Dorset where I grew up. We're renting a cottage in a friendly village with a good primary school and a good pub! Thankfully it has turned out well for us all - even my partner who loves the city. I have been in hospital a couple of times in the two years since we moved (iv antibios for pseudomonas) but the air quality is so much better and I feel much better over all. Plus it is pure pleasure to get out for exercise round here.

  • Hi Florence , I just noticed the 55 after your name, does that mean that you were born in 1955 like me ?. were you very ill with your chest during autumn 1957 to spring 1958 ?. There was a flu pandemic at this time and was probably the cause of my pneumonia and the subsequent swyer james syndrome.

  • Hi Florence, You have had a hard time - so sorry to hear about you loosing your husband, that must have been very hard and can understand why you may not have paid much attention to your own health! I do not have COPD but look after my husband who has - we have never been given anything other than COPD although I understand there are different types under the COPD umberella. I think my husband started noticing the effects of COPD about his mid fifiies and I am glad to report that, although we have had our ups and downs, good days and bad days, we still enjoy life ten years later. The only advise I can give you is tell you is to keep asking questions until you are happy with the answers. Take good care and good luck TAD xx

  • Hi TAD

    Thank you so much for your support. It has filled my heart with real cheer to hear yours and your husband's positive attitude to COPD. Keep watching the posts and I'll keep watching for yours. You should be able to get definitive explanation about your husband's COPD. I have now got a disabled badge which, of course, I'm hoping I won't need to use until I have one of the many 'autumn/winter' chest infections I am cursed with - they leave me feeling so knackered and sometimes totally immobile.

    Read my earlier post in answer to Dinnyrayner to get full info on my regime, etc. Good luck and best wishes for continuing positive spirit - makes all the difference to me! Thank you. xx

  • Hello Florence. Poor you - as you say, what a year!

    I am a similar age (55 on Tuesday) and have bronchiectasis (with "asthmatic tendencies"), small airways disease (obliterative bronchiolitis) and sinus problems. Also regard myself as far to young and active to be dealing with all this!!!

    I have never smoked either (which I regard as somewhat ironic) and love walking and cycling, so keeping fit is great as far as I'm concerned - unless I am in one of those phases when I am tired all the time. I find it very frustrating not to be able to get up the hill at the end of our village. As well as one adult son, I have two children aged 14 and 10 at home and think it's all a bit hard on them sometimes, not to mention my long-suffering partner.

    I am so sorry to hear that you've lost your husband and I hope you have supportive family and friends, especially if you have to have long term treatment for MAC.....which I had never heard of - but thanks for the very interesting and informative link. I like to keep up to date on things: think it gives an illusion of some control over my condition! Unfortunately we're open to all sorts of bugs, aren't we? I've had battles with pseudomonas - another nasty.

    Forgive the rambling. I wish you all the best with treatment and hope you can continue to get the most out of life, in spite of everything.

    Emma

  • Hi Emma

    Great to hear we have shared birthdays! Unfortunately, as I put in the reply to Dinnyrayner, I am now actually 56 (but having got the consultant's letter on Tuesday, decided I'd 'stay' 55 in my blog to cheer myself up!) ;0))

    Pseudomonas is, as you say, very nasty. My consultant says that I will have to try not to get too close to my cocker spaniel dog as she frequently gets pseudomonas aeriginosa infection of the lip folds around her mouth. I don't actually 'kiss' the dog (!!) but she does sleep on my bed - how can I stop that when she is 8 years old (and same 'human' age as me????) I just can't! I got so 'down' about all the health stuff surrounding my lungs that I did, much to my shame, get to the point where I thought 'you know what..............I'd rather risk getting 'this and that' than ever deny myself or my dog simple pleasures of being 'together'. Same goes for when my darling grandsons get a cold or cough..................if my daughter needs my help (or I'm just missing them like crazy), I could not and would not deny myself their joyous company - even though I know I am putting myself at risk. Life is short and I don't intend that I live a puritanical existence - I will respect the anti-biotic regime and I will not put myself into jeopardy by drinking alcohol during the 18 months, but I must make the most of happy occasions with my family and friends. How can we always know when we are 'exposed' to bugs anyway??? Impossible!

    As I mentioned earlier, the chronic fatigue has much wider implications than just feeling knackered............it also fills me with 'doom and gloom' so getting good sleep pattern is essential. You are a great inspiration to me with regard to the walking and cycling. I do manage both but, again, it's the times when I feel exhausted that my positivity 'caves in'.

    Tough for you with your children, especially those still at school,. My daughter of 32 is in total denial over my illness (her view is: Mum, you haven't got cancer.....it's not like you are going to die from this). How can I tell her that it will only take one nasty/anti-biotic resistant bug to do the damage (or worse)??? Lungs are precious, Emma...............and you and I have to make the most of the ones we've got. I'm quite a spiritual girl so when I do my breathing exercises (daily), I do consciously tell my lungs how I love them and will look after them! ;0))

    Look at earlier post for my regime. The lung exercises (ACBT and huffing) are so valuable in keeping the lungs clear and also help with relaxation at night time, in the dark, when our thoughts often turn to this 'curse' we are afflicted with.

    Keep in touch!

    Florence xx

  • Hi Florence, I hope the course of antibiotics works well for you. Do you know about the effect they have on your digestive system ?? they kill off all the good bacteria and this can make your system seize up , however you can take bio yoghurt every day to put it back or acidopholus (not sure of the spelling ) capsules from the healthshop. Another tip i was given was to wash the nose out and gargle with salt water to ward off viruses,it is supposed to work well,i will be giving it a try, salt therapy in other forms has a good report too but salt water wash is much cheaper .

    My regime is pretty gruelling too , i start with postural draining along with breathing exercises before i get up. then start the oxygen machine ( am on 02 all day and bipap all night ),then meds of 1 salamol neb, 1spiriva capsule, 1 uniphylin tablet , 1 calcichew d3 , 1 eucreas tablet and 2 puffs of seretide, also exputex x2,then the same again in the evening except - the spiriva and add aspirin 75.then when i go to bed i take nexium ( for reflux ) , nasal cream and nasonex spray.

    I have always been adventurous and enjoyed traveling light but now if i go away anywhere i have to take 3 machines and a carrier bag of meds , still at least we have them .

    I was medically retired from work in 1994 so i don't have that complication nor do i have a mortgage now that we live in Ireland.We came here for the fresh air but tractors and peat fires hamper that benefit.

    I have 3 children , 2 sons 38 and 37, both in london, youngest has has 10 yr old daughter and i adore her but i don't see her very often. My daughter lives here near to us and has a daughter 2 yrs 6 months and she is my little ray of sunshine , she pushes my portable oxygen machine for me and generally looks after me , she is so funny .

    Glad to chat or help if i can.

    nice to 'meet' you too xx

  • Just seen your latest two posts (inc. the handgel tip). You are an amazing girl! And so full of useful/vital info!

    I keep thoughts of you with me and just to know you are 'there' makes all the difference. I am here too..................and always have a huge listening ear. So please don't feel you have to give all the guidance - let me help you too if and when I can. I will be 'offline' for 8 days from tomorrow but I promise I will be in touch when I am back at computer.

    Big hug and many thanks,

    xx

  • Hello Dinny. Must back you up on antibiotics and tummies!

    I take azithromycin and much as I need it, it upsets my insides something rotten. At the moment I'm on ciprofloxacin too, thanks to an exacerbation. Think this is called a "double whammy"! I take lactobacillus capsules as well as lots of probiotic yogurt (except when taking ciprofloxacin as dairy affects absorption) which I love. The effect is amazing. It really works.

  • ps hand gel is a good barrier against virus etc xx

  • Hi All

    Just to say that all of you who have contributed to my blog have made me feel so much stronger.

    I just want to say a HUGE THANKS to you all. I wish we didn't have to meet 'here' with 'this' lung stuff but I'm glad it is a vehicle for all of us to help one another.

    Going to be off line now for 8 days but will respond to anyone who writes.

    P.S. Maybe a trampoline (you know.......one of those small indoor affairs - I think Reebok make one) is a fun way to keep exercising and ensuring efficient oxygen intake and might do only good things for our overall lung health? Let me know what you all think? If you are a medic and you're reading this, please put us in the light with your own professional view.

    Night night,

    Florence55 xx

  • I forgot the trampoline! We have a 12 ft one in the garden - ostensibly for the children, but they encourage old mum to get on with them and we usually end up falling about laughing (also good for shifting phlegm, I find). My teenage daughter has shown me that it's a comfortable place to lie in the sun too, and watch the clouds go by etc - very therapeutic!

    Happy to have "met" you folks with similar challenges as I had thought there weren't many bronchiectasis people on this forum. Keep in touch!

  • Thanks everyone, I thought I was alone. I was only diagnosed in March and I am still reeling from the shock. I have so many questions I want to ask my consultant, so I am writing them down. I have been ill with one infection after another since October 2010 with only one 3month period of respite. I thought I had cancer. Bronchiectasis with asthma and allergies is a horrible combination, I get rid of one problem and along comes another. Keep your chin up everyone lets all keep in touch more often, Bronchiectasis is noot mentioned as much as COPD. I have learnt to live for the day and if I cannot do what I want today I shall try again tomorrow. I have stopped chasing around like a mad thing and I have stopped to smell the roses. So something good has come out of this. I am happier too in a strange way, maybe because people do not expect so much of me anymore. I am lucky to have the best husband in the world, however, like some of you my daughters are struggling to understand. Sorry to go one. Thank you again for your stories and encouragement. Maximonkey

  • Hi Maximonkey

    You are right about bronchiectasis not being mentioned as much as COPD (even though, technically, according to my consultant, it IS a form of COPD.

    Ironically, it's the same with MAC nodular lung disease (which I've also been diagnosed with) - it appears that the USA are streets ahead of us in terms of education and understanding of this awful 'affliction'.

    Keep your chin up - I know how miserable and frightened we are sometimes but, as my darling friends say, 'we've probably got 'silent illnesses' on the go, one way or another and at least you (we) know what we've got and that our conditions are being looked after!

    Florence xx

  • Hi All

    Just back from 9 days in Bulgaria where I did top up the Vitamin D! I was told after my second admission to hospital in March with the pneumonia that I my vitamin D level was dangerously low and had to have a vit. D injection in my bum! My research of the MAC nodular disease would suggest that I will suffer from vitamin and mineral malabsorption, i.e. regardless of my 'healthy' diet, the mycobacteria will prevent some of those precious things being absorbed for use by the body.

    Anyway, on a lighter note, the air was healthy, the sky was blue, I swam loads and loads and loads and walked even further whilst on hol. I've come back with nearly green hair but, hey ho, a girl's gotta do what a girl's gotta do to keep fit and healthy.

    On the plane back last night though I started sniffing, sneezing and coughing and I thought 'Oh no - bloomin' air con is full of nasty bugs and I'm breathing them all in!!!' So............today..................upped the Symbicort, did sinus nasal flush, have taken Flexinase, done my breathing exercises to keep the lungs clear but on checking the peak flow am shocked to find it's dropped significantly!

    I'm fighting it but it's hard psychologically as next week I have latest CT scan and chest x-ray and then meet up with consultant to hear whether the nodules in lungs are increasing (in size or in number), whether there are any new shadows (I'd be surprised as I feel too well and my appetite is, sadly, as big as ever! LOL), and to discuss whether I'm starting the 15 to 18 month programme of triple-whammy anti-biotics to kill the avium-intracellular mycobacteria. Wow!! I ain't half learning some long words! ;0)))

    Hugs and positive thinking being sent to you all,

    Florence xx

  • I just found this discussion thread, which is amazing and so helpful! I wanted to share another website that has a lot of useful information. It is ntminfo.org It is a nonprofit organization dedicated to patient support, research and education for NTM and related lung diseases. They also maintain an active Facebook page at facebook.com/NTMinfo

    Best to everyone,

    Lisa

  • hi I was diagnosed 21 years ago with bronchiectasis and I am 74 years old now and still managing my condition with the help of Breathe Easy BLF and my local respit[tory

    team. I just try and keep myself safe from infections and make sure my maintenance plan is adhered too by all. I know I am lucky with the support from my gp and others I do hope you can get help and advice to maintain a long life like myself good ;luck

  • Hello Florence

    I read your story and thought it was me, apart from your Husband which is so sad for you.

    There is no knowledge out there, or very little, I was even told by an A & E doctor that he had learnt something and found me very interesting!

    I have now finished 20 months of treatment and had CT which had shown Bronchiectisis, my previous consultant thought I had this 20 years ago but despite CT nothing came up until now.

    There is a gentleman who is looking for people in the UK with Mac, he's found me via LinkedIn. He is based in the USA, he's British and is trying to raise awareness in the UK he works for Patients and his name is Robbie McCarthy from the patient experience.

You may also like...