I must be doing something wrong. I have written twice previously and have not seen any response. I wonder if this is the right format for me

[Mary10]

I have been dx'd with bronchiectasis secondary to Pulmonary MAC micobacterium avian intracellulare, and more recently AFib. Is this the right site for me? I have not received any response to my posts so far. Mary10

[Offcut]

Welcome.

I have had a look at you posts and I can only see this one so I think you may not of posted them or HU messed up? I had bronchitis as a child and was off school most terms and found to have asthma in my 20's. I have a multitude of conditions now

I cannot help with the MAC but found this link that might emedicine.medscape.com/arti...

maclungdisease.org/frequent...

As for the AF I have had that before being diagnosed 1992 There are many treatments and procedures that have good rates of success. I think I have had most of them

Have they said that the bronchitis is the cause of the MAC or a consequence or even vice versa. I would be interested to know what treatment they are offering?

BTW there is a AF Association HU forum as well which I am on also.

Be Well

[Mary10 in reply to Offcut]

Thank you for this info. Very much appreciated!! Mary10

[jenss]

Hi Mary, yes this is the correct site for you and Offcut is correct in saying there seems to be only this current post from you- something must have gone wrong with the others. Anyhow, welcome to this friendly and helpful forum. I am sorry I cannot give you any advice on your conditions but I am sure someone with the right knowledge will come along soon. Great to hear that you are doing well and are optimistic and enjoying yourself. Take carexxx

[cofdrop-UK]

Hi Mary

Sorry I seem to have missed your post. You have a lot t deal with and I am sorry to hear you have also been diagnosed with bronchiectasis. There are quite a few bronchiectatics on here, me being one of them. Seems a bit quiet on here at the moment, probably because of the holidays. I am going off for b'day stuff for a few days myself. Hope you stick with us because there are a lot of knowledgeable folks on here, and some will know something about one or more of your conditions. You will get support. You may also want to 'phone BLF nurses who are very helpful, although this would now be after the holidays.

Click the red balloon above for contact details.

Let us know how you get on.

love cx

[sassy59]

Welcome to this wonderful site Mary10 and happy to see you have had some replies now. You are definitely in the right place for support and advice so do post again. I cannot help you but lots of others can and will. I just wanted to welcome you as I have not seen you post before. Good to have you on here now though. Take care xxxx

[huggs]

Hi Mary,

I just wanted to say welcome to the site, and although I can't help you with your particular health problems there are plenty of others who can and you have had some good advice already. Stick around and we have a bit of a laugh and banter as well, so you are in the right place. Something must have gone wrong with your previous posts as the others have said, and sometimes things like that can happen.

Take care,

hugs from Huggs xxx

[Hidden]

Hi Mary, I'm sorry I have no idea what uve just written ( 😜😃 ) but welcome to the site, and hopefully no more of ur posts will go missing xx sonia xx

[Mary10]

Thank you for your comments! They are much appreciated. I have already benefited from reading your posts....

[helingmic]

Mary,

A very great welcome to our forum. Yes you are at the right place.

I had bronchiectasis since 1994. I had a lot of deterioration and nasties. I did hav MAC mycobacterium in 2010. It was my worst time of illness.My doctor and his microbiologist saved my life and gave me Clarithromycin and Rifampicin for 2 and a half years, that’s how long it took to eradicate it and nake sure it my lungs were clear of it. I took my body in charge too as I went with my oxygen bottles to the gym. After 2 months, I discarded the oxygen and persevered at the gym

This January, I’ve just started learning the flute!

IN 2010, my lung function was 30% only and I could hardly walk a few yeards. Last week, my fuction was tested again. It went up to 42%! This is defeinitely thanks to the gym

Convlusion: Yes it may be a long treatment for MAC, but if you take charge, you too can improve your health dramatically.

If you wish I can provide several types of exercises that help with the lungs.

One very obvious one is the following:

youtube.com/watch?v=iIrAUL_...(Not working as expected?)

You could also ask to be referred to a pulmonary nurse. This a very helpful lady – at least in Kent. I hope this helps you to gain confidence in yourself, because you can improve. Mic

[Mary10]

Thank you Helingmic and others for your kind responses. I was dx'd with Pulm. MAC in 2010 also. My main symptom has been bleeding , hemoptysis, and hoarseness. I was on triple antibiotics for a year and a half initially and within the past month I was hospitalized for bleeding and given antibiotics intervenously, as well as Coreg and eliquis for AFib.

I am back on triple antibiotics long term ethambutol, rifampin, and azithromycin. My doctors are in Florida 6 mos and Boston 6 mos. Both in agreement re. treatment at this time.

I am feeling well now that I have adjusted to the meds. Doing my daily walks again. Love the exercise video you sent Helingmic. Will incorporate that into my daily routine as well.

I use an acapella device for clearing mucus and a smart vest. (vibrating vest) which I saw on line and my doctor wrote script. Both helpful for the bronchiectasis. Blessings to all. Mary10