Recently diagnosed with Bronchiectasis

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alanjudy Posted: 03-24-2010 6:55 PM

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I have recently been diagnosed with bronchiectasis after having chest infections that won't clear since the beginning of December. I have had a CT scan etc and it was a specialist who diagnised it. I seem to have been on antibiotics more or less continuosly since December. I am also taking mucodyne and have an inhaler. I have seen a chest physio and have numerous breathing exercises to do. I have to say the only reason I have been diagnosed so quickly was because I went privately - I would still be waiting for the first appointment on the NHS. I am feeling very depressed as I am continually tired and only feel about 75-80% normal. Unfortunately when I was off work for about 6 weeks none of my work was done so I am under some pressure to catch up.

Sorry to moan but please tell me that life gets better. I'm 55 and don't want to be written off just yet.

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Emnick replied on 03-24-2010 7:12 PM

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Hi Alanjudy

Welcome to the BLF forums and sorry you are having a rough time.  Going through a diagnosis is really tough and coming to terms with a lung disease takes some time to get used to.  I have COPD/Emphysema and was diagnosed about 5 years ago.  You will probably have to make some adjustments and recovery from exacerbations can be a slow, gradual process.  It is hard to keep positive at times and managing work on top doesn't help. 

All I can advise is make sure that you don't go to back too soon and when you get frustrated with your recovery just think back how ill you have been.  You are by  no means written off and things will get easier I can assure you.  You would probably benefit from doing a pulmonary rehabilitation course as that will teach you how to manage your condition and how to exercise safely which will help you deal with and overcome your tiredness.  It improved the quality of my life immensely. 

I am sure other members will share their experience with you too.  Hang in there.

Best wishes

Emma

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Glenda replied on 03-24-2010 8:25 PM

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Welcome alanjudy!  I was also diagnosed in December following infection which wouldn't clear.  Private consultant suggested a bronchoscopy which entails a tube down into your lungs and he cleared out loads of gunk!  (Done under sedation so you don't feel a thing!)  This was followed by IV antibiotics for a few days and tablets to come home with.  I'm like a new person since although the exercises are important too.  A specialist physio can show you how breathing correctly can help you to bring up the mucus which can collect and become infected.   It also transpired in my case that the antibiotic my GP had given me was just keeping a lid on things without clearing it up properly so specialist has changed the maintenance drug I now take.  Perhaps you could tentatively mention bronchoscopy ??  Good Luck.

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alanjudy replied on 05-10-2010 6:43 PM

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My consultant has now decided that I need to go into hospital for a course of iv antibiotics and a bronchoscopy. After negotatiation I am going in on the 21st until 30th May (having to do everything privately as the NHS has let me down).  I'm hoping that I will feel like a new person after that. I get so tired and my lungs actually ache.

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alanjudy replied on 06-10-2010 10:43 PM

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I am now out of hospital but still using a nebuliser twice a day, on antibiotics, mucodyne and symbicort. Being very good at doing my active breathing exercising etc. I go back to work on Monday on a phased return over 2 weeks so I have plenty of time to get used to working and doing my morning routine.

I am worried as we are going to France to classic Le Mans soon and will be camping whilst at Le Mans.

 Has anyone any tips? I will be seeing the chest physio next week. has anyone done their breathing and postural drainage whilst camping? Also worrried about being around loads of people who could be smoking and exhaust fumes.

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angel replied on 06-19-2010 9:44 PM

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Hi

It's a bind.....same diagnosis and about the same age as you. I was diagnosed about a year ago. I have been prescribed Spiriva and found it very good. Was infection free for ages although recently had another infection. It is depressing and takes time to adjust. I have found I can cope better if a focus on and put my energy into the things I can enjoy and let go of those things I can't do. it is a choice...... not to sound too morbid but all of us probably have a reduced life expectancy.......make the most of what you have and don't mourn too much over what you have not.

I remember once a GP coming to visit me and saying I had a non toxic infection.......don't understand it but I felt very tired . I took antibiotics and was quickly well. Maybe you have an underlying infection?  Take care.

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alanjudy replied on 07-23-2010 10:08 PM

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I went to France and it was probably the worst week of my life. It was very hot and dusty with vehicle fumes. The finishing touch was the journey from Dover to Hertfordshire in the rush hour with the back window of the sports car unzipped and my husband had the driver's window down. My the time we were nearing home I wondered if I should just go straight to hospital! I didn't as I was on azythromycin and have my own nebuliser. I emailed my consultant that evening as I was so ill. I saw him the next day and he decided to do another bronchoscopy on the Friday and I had bloods on the Thursday. My CRP had gone up to 50! I saw him again yesterday and after all the extra tests I had he has decided that as well as bronchiectasis I have organising pneumonia. I am now on another antibiotic for 2 weeks but also prednisilone for at least 6 weeks. I will also be having another couple of blood tests and a chest x ray before I see him again in 6 weeks.

I've now decided not to leave the country for a while and have cancelled our bank holiday trip to see friends in France. I'm just wondering if I will ever get better!

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SusieQ replied on 07-25-2010 10:18 PM

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Sorry to hear that your holiday was 

alanjudy:

probably the worst week of my life

Sounds as if your destination and accommodation might not have been the best for someone in your situation?  Maybe you just need to concentrate on getting yourself really well and build up your immune system ready for the winter onslaught.  I have bronchiectasis in with my COPD - I like a little variety!!  I have managed, after a few years, to get mine under control through a combination of gentle exercise, breathing exercises, yoga and diet. 

For me personally, I find diary products increase mucus production, the last thing I want with bronchiectasis;  I also avoid bananas, wheat, red meats, mushrooms and sugar.  It may be worth playing with your diet to see if certain foods make things worse or not - I was ready to do anything just to get better.  I have also been told to cut sugar out of my diet totally when I have an infection ... apparently bacteria like feeding on the sweetness.  Anyway that is what works for me - as I have said, it is a personal thing.

Do not despair - I go to Greece twice a year and I am on LTOT - so you will be able to leave the country in time.

Good luck and concentrate on getting better.

Sue

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angel replied on 07-26-2010 9:08 PM

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Hi

What part of France ? I am about to go to Nice and am a bit apprehensive about the pollution to say the least!

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plumbit replied on 08-03-2010 9:41 PM

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hello ,just signed up 2 this site and came across ur page ,i 2 have organizing pneumonia (boop) been ill from december 2009 until now ,been on steriods for 5 months ,doses couldnt tell u ,up and down all the time and 3 ct scans 1 with lung biopsy ,been told its gone from 3cm to 1.7 cm now still coughing badly all the time so much ive broken my rib twice ,doc thinking of putting me on azathioprine tabs ,a bit worried about this ,cant ween off the steriods without getting rough again ,moon face starting not 2 happy about this usual fit and slim ,ish 40 year old any feed back would be nice

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alanjudy replied on 08-11-2010 6:18 PM

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Sorry for not replying to the posts earlier but my father died on 29th July - not a lung related disease and he was 95 however it has upset me a lot as you can imagine.

We went to the Classic Le Mans race which is held in Le Mans. As it was car racing and we were camping and in a sports car it was the worst thing out for me. I think that I am getting slightly better on the steroids and my blood tests show a slight improvement. I haven't been on them for long enough to get any of the awful side effects and those I do have such as sleep and eyesight problems can also be down to my bereavement!

I have been trying to watch my diet - I don't eat meat and have hardly drunk any alcohol since I got ill at the end of last year. I try to avoid sugar and fermented products because of yeast - I have had fluconozole as there was yeast in my lungs.

I am thinking that a cruise would be a good holiday and one of the GP's agreed. She has also given me a fit note to work less hours and has told me that I must spend the next couple of months concentrating on me and getting as fit as possible before the winter colds etc. start. Hopefully I will make it back to the gym this week for some gentl e exercise.

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rita replied on 08-11-2010 10:46 PM

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So sorry to hear of your loss.  Seems you are having a roller coaster of a year; a cruise wont make it all go away but it would give you a complete rest and time to recuperate.  Go for it!!

You talk of winter colds, and I have to say I have kept surprisingly clear since I was diagnosed 5/6 years ago (touch wood)as my GP insisted on giving me an annual flu jab and then one year one for pneumonia.  My winter colds now seem to manifest themselves in lip cold sores or horrible phlegm, rarely the "old fashioned" coughs and sneezes, thank goodness!  I can usually cope with these better.

I do hope you will start to feel the benefits of your meds soon but you really do need to take care of you - your'e the important one now

Have a good trip

Rita

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alanjudy replied on 10-24-2010 1:34 PM

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Unfortubnately for a variety of reasons we won't be going on a cruise this year.

My bronchiectasis is pretty much under control so long as I take the medications and do my active breathing etc. However the organising pneumonia is being extremely difficult. Everytime my consulatant tries to lower doses of drugs or stop them it comes back. Luckily I know when it is getting bad so can get in touch with him before I get to the stage where I'm totally incapacitated. He is now working at St George's in south London which is a long way for me to go but it is worth it for the facilities. They gave me a full MOT so I know it's only my lungs. Drugs/dosages changed and feeling slightly better.

I have started having personal training at the gym once a week to make sure that I do exercise safely. I'm also trying to walk more. I have another CT scan booked for the end of November. For the past 3 Christmases/New Year I have been ill so I'm really hoping that this year I can enjoy it.

I've had the flu jab and insisted my husband had one too, luckily his company paid as the GP wouldn't give him one. 

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alanjudy replied on 11-23-2010 11:19 PM

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I had my CT scan today - and it was not good. The organising pneumonia is worse even though I feel slightly better. Apparently there is quite a lot of fibrosis on my lungs and things are worse since my last CT scan. I have to have an echocardiagram to see if my heart has been affected along with a full battery of lung function tests. Last February my lung function was excellent but I know my breathing has got worse and a test at the gym showed it had gone down. When I have had those I will then see the Consultant again to have my medication changed again. He will also tell me if there is any hope of going to France to see my daughter next year. She is going to do the ski season at a hotel in Courcheval 1550 from November 30 to May 1. I will find it very difficult not seeing her for 5 months - she is not allowed to leave so I hope my lungs will cope with the cold.

On a brighter note my nice new warm coat I ordered arrived today so I'm set for the snow.

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rita replied on 11-24-2010 9:23 PM

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Alanjudy

Sorry to hear of your woes, sounds as if you wont be leaping around this winter too much!

Had a thought about you missing your daughter.  My lads have all got computers with webcams as have I so I can get to see them and talk to them too.  Any chance you and your daughter can organise something similar?  Means you wont feel so isolated from her?

Aren't new coats lovely??

Have a better day

rita

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alanjudy replied on 11-25-2010 10:23 PM

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She is taking a cheap lap top with her and she will have her iphone plus a phone with a French simcard/number. We wil email, text, facebook  and skype but it's not the same as seeing her. She was at uni for 3 years so I'm used to not having her around. My other daughter doesn't live at home but near by and works for the same County Council that I do although not in the same place.

Still waiting to hear when my lung function test will be - it has to be so the results are availble for the consultant on thursday. Luckily he has a really efficient secretary who chases things up for me plus I can email or text him. Reading the forum I realise just how lucky I am with my consultant and getting tests and treatment. I only go to my GP to get repeat prescriptions.

Work is really busy which doesn't help. Unfortunately some things I do no-one else can do. When I was off work for so long atthe beginning of the year it just piled up until I got back!

At least no snow yet in sunny Hertfordshire although it is forecast.

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alanjudy replied on 11-30-2010 9:22 AM

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Had all the tests on my heart and seen the cardiologist - everything fine. Nothing wrong with my heart at all. They now have a baseline in case there is a problem in the future. Lung function test later today after we have taken Alison to the airport. There is some snow here but not enough to stop everything.

I have decided that whatever I will be going to Courcheval to see Alison. I will manage somehow even if I hardly leave the hotel!

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Ian replied on 11-30-2010 10:01 AM

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Hi, Alanjudy it is good to hear that your cardiologist has given you the all clear , it is a boost to your confidence Hope the lung function works out well and you can get to Courcheval well enough to enjoy the visit, arriving in a bad state and trying to bluff it seems counter productive

I am not a mum but do understand what it is like to worry about one

Take care and good luck

Ian

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rita replied on 12-01-2010 9:42 PM

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Well done you - so far so good.  Now take things one day at a time and here's hoping you can get to see your daughter

Who's the lucky one with little or no snow!!  Would you like a few tons??  Can send them down to yoy if you insist on making a snowman

Keep well

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alanjudy replied on 12-05-2010 11:01 PM

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The lung function test showed by lung function was nearly the same as it was in February. It was worse in May/June but has now improved. Going to the gym obviusly pays off. The consultant wants me to stop the steroids - I have already stopped the azythromycin and he then expects me to get worse again 3-6 weeks after stopping the steroids - my recurring organising pneumonia. I still need to treat the bronchiectasis. I said that I didn't want to be ill at Christmas as we are going away and I've been ill for the past 3 years! I have agreed to reduce the dose on 27 December and on past form should be ill around my birthday  at the end of January. However apparently he has to do it because my PCT (East & North Herts) won't pay for some drugs  long term unless it is shown they are required! I have got a private presciption as an emergency if need be so I don't need to be ill for long. I also saw the GP on saturday morning and she has written it all down and said I just had to ring and they would immediately write the prescription - that is presuming I can get past the receptionist. I must admit I did burst into tears on her as I hope I can feel better that I do now. The main thing is tiredness but that is down to my ESR and CRP being permanently high.

I have to have another set of bloods, lung function etc etc in 3 months time. My GP did say that it would do me no harm to go to Courcheval to see my daughter so long as I was sensible. We shall start looking at dates and the ski train. Alison has to book it so we get a discount and there will be no skiing for me only apre ski.

On the bright side someone on Saturday asked how I managed to be wrinkle free at 55 nearly 56 so I told them it was steroids - all facial wrinkles gone! I did point out there are other side effects!

I'm venturing to France for the day on Tuesday - 9 of us from my French group (whic I have hardly been to this year). Eurostar to Lille. I'll let you know how I get on.

Sorry for such a long post.

Judith

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Ian replied on 12-06-2010 12:00 PM

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Hi, Alanjudy can understand your disappointment that test results did not come back as good as you had hoped but taking as few steroids as you can is probably what your doctor is aiming for. In a thread on Bruising the side effects of steroids were discussed , there is a thread on Osteoporosis and steroids which tells of side effects of long term steroid usage.

Saving the steroids for when you need them most and they will be most effective is part of the trade off with side effects. Glad to hear your doctor supports you going to Courcheval and hope you have a great trip, a hug from your daughter is a better pick up than any of the drugs you have to take.

All the best

Ian

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alanjudy replied on 12-11-2010 12:14 PM

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The trip to France went well. I managed ok although by Friday I was exhausted as it was a very busy week. It was very cold in Lille and we ended up in a shoppig centre and supermarket just to be out of the cold air.

I am suffering a bit today but don't plan to do much.

Judith

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alanjudy replied on 01-02-2011 12:03 AM

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Hi

I hope everyone has had a good Christmas. As we went to a hotel it was really restful. I have also managed a long break from work. This is the first Christmas/New Year for 3 years I have not been ill. We have travelled around the country a fair bit and I am still able to do things. I did refuse to go on a long walk when the weather was bad and have been fighting off a bug.

I went to the GP on New Year's eve and got a 6 day course of 500mg Azythromycin rather than just taking my 250mg 3 times a week. Apart from being really tired (usually a sign my ESR and CRP levels are getting too high)  I have managed to avoid a bad chest infection. I am currently reducing my steroids but the consultant does think I might relapse in 3-6 weeks time so .....  I do have an emergency prescription if I do.

Happy New Year to all.

Judith

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harry replied on 01-02-2011 12:29 AM

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hi Judith, would that be capsule steroids, prednisoline ? what sort amount are you having,

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alanjudy replied on 01-03-2011 3:00 PM

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Harry - its is predisilone tablets. I have been on variuos doses but recently just 10mg a day which seems to be the absolute minimum that has kept my symptoms under control. I also take symbicort which has steroids in it.

Judith

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harry replied on 04-02-2011 5:56 PM

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Hi Judith, 

hope the holiday went a bit better this time, It must have been good to see your daughter, having a break from work and recharge those batteries..... away from the fumes etc.

Looking forward to hearing from you, slugs waiting for a bit warmer to go slithering about.....

xx