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Bronchiectasis, disease progression and lifestyle changes

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation

Good afternoon all,

Apologies once again for the radio silence after my last post back in June when you all very kindly gave me some sage advice on whether or not I should continue working full time.

After some considerable soul searching, I decided to take the option of stepping back from my current job and taking a part time position where I work the equivalent of two days a week but spread over three days. It's still early days and I think I'm yet to fully appreciate the benefit of the decision as it's been a busy summer. However, I definitely think that it was the right call to free up more time for me to recharge the batteries, look after me more and try and get to the bottom of some of my on-going issues with my lungs and beyond.

That decision appears to have been vindicated further following my annual lung transplant clinic appointment last Friday. Lung function - my first since in almost 2 years - showed a drop off across the tests which isn't wholly unsurprising given the nature of the fibrosis. I could hardly expect for the levels to have stayed the same (though you can always hope!) and I was prepared to be told that the levels had dropped.

What I wasn't expecting, however, was for my consultant to tell me that the CT scan (taken in March 2020) showed that my airways have widened in my right lung due to fairly significant bronchiectasis. It makes the additional tiredness I've been feeling along with the additional mucus production and nasty couple of chest infections all make much more sense and compounds the huge reduction in lung capacity I've already suffered due to the underlying fibrosis which shows no signs of stopping despite the prednisolone.

The CT scan also shows that my right lung has also shrunk considerably and the combination of the two means that lung transplant as an option is suddenly much more complicated and, possibly, may no longer even be an option. The hospital have requested another CT scan to get an up-to-date view of my lungs and my case will be discussed at the next MDT meeting.

A lot to take in and not much I can do at this stage on the transplant front other than wait to hear back on the transplant team's recommendation. I can only hope that transplant is still an option available to me otherwise my options become much more limited.

In the meantime, I've been reading up on bronchiectasis and it sounds like there is lots that I can do to try and alleviate some of the symptoms and reduce mucus build up. I've yet to hear from my regular treatment team about bringing my scheduled appointment forwards to discuss the new situation but will definitely push for this as I can't help feeling that my passive approach over the past 18 months due to fear of COVID and not wanting to distract them when they're so busy has, in part, contributed to the delay in diagnosis and potentially even removed the option of a transplant.

Overall, I'm not sure what to think at the moment. I've always known that it would come to a point where I'd have to make a call on the transplant but I never thought it would be this early and it never even occurred to me that it might not even be an option on the table anymore.

Lots to ponder over the coming weeks and months but I think what's clear is that if transplant is still an option, it would have to be something that I pursue sooner rather than later if, indeed, I want to go down that route at all. The risks were high before but they're potentially even higher now and there's not even a guarantee that they'd be able to find a suitable donor.

Right now it feels like one thing after another as I'm currently suffering from a nasty chest infection that I haven't been able to budge. I'll fight on but it's been really tough recently and I hate the impact that it's having on my family who are understandably all very upset.

I'll keep you all updated on how everything goes but any tips in the meantime on how to tackle the bronchiectasis and stay sane would be much appreciated.

Cheers,

Andy

76 Replies

It is a lot to process! Lots of things to think about. I’ll be praying for the best outcome for you!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Maricopa

Thanks Maricopa! Going to need all the luck I can get going forwards I think. Hope you're well and enjoying life currently?

Tired of this covid. All of our hospitals are completely full.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Maricopa

Couldn't agree more RE Covid. Sadly I think it's going to be around for a fair while yet and the knock on effects in terms of delays to services, diagnosis etc will take a long time for us to catch up with. We can but try and with services stretched it makes the roll of charities like the BLF or Asthma UK all the more important

I'm sorry that another lung disease has been identified to add to what was already a difficult situation for you. I'm sure that some of our forum buddies with bronchiectasis will be along to advise on how to deal with that. Sending you my best wishes for positive steps forward.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to CDPO16

Thanks CDPO16. The bronchiectasis is a blow. Not only is it another thing to deal with but it also limits/complicates the transplant options quite significantly. Got another CT scan in a couple of weeks which the transplant team will discuss as part of an MDT. Things will be a lot clearer after that. In the meantime, I've got to focus on shifting the current chest infection and learning more about the bronchiectasis so looking forward to reading others tips and advice. Really hope you're well?

I'm doing ok in the scheme of things Andy and not faced with complicated health issues as you are. I hope that things work out well for you. Carole xx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to CDPO16

Good to hear that everything is going ok for you at the moment Carole. Certainly got some speed bumps to negotiate and some tough decisions to make in the not too distant future. In the meantime, I'm trying my best not to get too worried about things I can't control. Once the doctors have decided what my options are I'll be able to make a call on what to do next and know exactly what I'm up against.

I hope that the decisions the doctors make are in your favour but I'm sure that they will have your best interests in mind. Keep in touch and let us know how you go on.

Lovely to hear from you. Hmm… 🤔 Tricky stuff. I am sure that your decision to cut back on work was right. Your bronch mates here will do all they can with advice and support.Love and gentle hugs

Kate xxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Katinka46

Definitely the right decision to cut back on work but it was still a hard call as it was yet another thing that I was having to cede to the lung disease which is always frustrating and another indicator that things have progressed. Absolutely no point wasting energy on what was so very keen to hearing others advice on the bronchiectasis and doing what I can to stay as healthy as possible.

Damon1864 profile image
Damon1864Volunteer

Hi Andy you certainly havee lots to think about, I hope you get the answers you need and want. Thinking of you and you are in my prayers have a goodnight and take care 😊 Bernadette and Jack 🐕 xxxxxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Damon1864

Thanks for getting in touch Damon1864. Really appreciate all your thoughts and prayers which I'm certainly going to need going forwards. Some tricky times ahead but I'll do my best with whatever I'm given and hopefully transplant will be an option that I can at least consider. Really hope you're well and wish you all the best going forwards.

Damon1864 profile image
Damon1864Volunteer in reply to Damon1864

If you ever want too chat or just blow off steam just pme. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Damon1864

Thanks Bernadette (and Jack ;) ) that's really kind of you! Not sure what I'm up against yet as the docs have yet to discuss and decide what my options are but it's lovely to know that people like you have my back. I love this community!

Good to hear from you again Andy and I just want to say there are good people on here who have bronchiectasis so I’m sure they’ll be on here soon. I do know it’s a good idea to get a bronch specialist so I wish you well with everything. Do stay in touch. Xxx😘

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to sassy59

Thanks sassy59! Great to hear from you as always! I've already got an appointment booked to go through everything with my GP and my respiratory team, I'm sure, will have a bronchiectasis specialist on their books. If not then I will certainly push for one. Really hope you're well and thanks as ever for all your support.

I’m pleased you will be seeing your GP and respiratory team. A specialist is essential. We’re ok thank you and your welcome to any support I can give. Take care Andy.

Best wishes Carole xxx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to sassy59

Thanks Sassy. There seems to be some debate at the moment between my consultants that look after my day-to-day disease and the transplant team over the bronchiectasis. My GP is fully supportive and will assist in whatever way they can. Have a lovely weekend and thanks so much for all your support as always!

Good luck to you Andy. Enjoy your weekend. Xxx💜❤️💜

Good to hear from you Dodgy! And I'm sure you did the right thing in going Part-time at work, as you have enough to think about. I'm sure too, that you,ll appreciate not having to get up early, when the Cold, dark, Winter Morning's arrive. I know I do. They seem to be coming on in leaps and bounds with those Lung Transplants, especially at specialist places like Papworth hospital. So although it may not be an option right now, it may well be in a few years. I hope that you can keep up your positivity and that things go well for you. 🧓👍

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Dubba61

Dubba61 thanks so much for all your support as ever. Definitely did the right thing to go part time with work though found it hard to let go as it felt like giving in a little bit. They've definitely come a long way with lung transplantation which is very encouraging. My hope had been to delay for as long as possible for them to get even better at it but I think that it will have to be sooner rather than later now given my complications if, indeed, it's still an option on the table. Really hope you're well and thanks again for all your support.

Hi, really good of you to give us an update Andy, I've often wondered how you were getting on and I'm so sorry that things aren't as well as you'd hoped they'd be. Have they helped you with the best physio techniques for you with expelling the bronchiectasis mucus?

I can think of three highly experienced bronchiectasis members, I hope they'll be along soon with their great advice.

I'm glad you decided to cut down on work hours, I've always felt that quality of life is very important, time to pace yourself, time with loved ones and less stress travelling.

Wishing you the very best. Peege

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to peege

Hi peege. I only got diagnosed on Friday when I was at my annual lung transplant assessment clinic. My respiratory team have been informed but I'm yet to hear back from them and don't have a face-to-face appointment with them to January. I've been in contact to update them on the situation and suggest moving the appointment forwards but I've yet to hear back from them which is a bit frustrating but I'll keep pushing.

As a result I haven't had anyone talk to me about physio techniques or anything like that. I've done a fair bit of reading up on bronchiectasis already though and going to put some of the tips that I read in to practice.

Giving up working full time was tough but it'll reduce the stress and hopefully give me more time to focus on staying fit and healthy for as long as possible.

Really hope you're well and thanks for reading my post.

Hi, I’m so sorry you are having such rough time currently. I have had Brohnciectasis for almost 30 years, I think you have definitely made the right decision to cut back on your working hours. I actually retired early as I was just getting continuous infections, and have been much better for it. I have also been using a Flutter device to shift the mucus for about 3 years which has really helped. Keep positive and I’m sure things will improve very soon, wishing you all the best 😊

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Rattle10

Hi Rattle10 . I'm sorry to hear that you've had bronchiectasis for so long but at the same time it's good to know that you've lived for so long with the condition. That gives me hope for sure although I'm not sure how well it'll mix with the on-going fibrosis...

Glad to hear, too, that you're feeling better for having retired early. This flutter device sounds like something for me to consider either now or in the future - I'll take anything to help shift the mucus which I find is always there bothering me but is awful and results in coughing fits and throat irritation in the middle of the night. I've been using cough medicine to calm it down but it's hardly a viable long-term solution!

Wishing you all the very best going forwards and thanks so much for getting in touch.

Hi, I just wondered if you are taking mucus thinning meds, I’m sure you must be. I take 2x Carbocisteine three times a day. In addition to this I nebulise saline before I use my Flutter device which also loosens the mucus before bed. This has really helped me not coughing at night. You can always add honey and lemon, with a dash of brandy! Sorts me out! I do hope that your condition improves very soon , keep smiling!😊

peege profile image
peege in reply to Rattle10

Yes that's a point Rattle, I'd forgotten to mention them. Carbocysteine, I take it too. 2 capsules twice daily though when I first prescribed it was 2 capsules 3 times daily. Really worth trying it Andy. If the GP isn't forthcoming you can buy N-acetyl-cysteine over-the-counter (known as NAC). It does the same job as Carbocysteine and I know from experience its used instead of carbo in France and Croatia. I'm shocked you haven't been offered physio to expel, the mucus. I wonder if BLF nurses on tge helpline could offer guidance here or perhaps even YouTube video. I'm lucky, the huffing tecnique is usually enough. P

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to peege

Hi Rattle10 not to my knowledge (as it stands). I'm currently only on the prednisolone and I'm about to resume doxycycline to give me a baseline antibiotic to help reduce the risk of infection over the winter months. I'm sure that will change if/when they decide the severity and type of bronchiectasis. I'll be certain to ask the question about Carbocisteine.

peege to be fair to my treatment team, I've only just been diagnosed (by my transplant team at least). My main treatment team that I go to for my disease management have yet to confirm and I need to do some further tests. I'm sure they'll then look to discuss things like physio. Huffing I do know about though and sometimes gets results.

A great deal to think about and not easy for you. I hope you are able to have the best outcome. Thinking of you xx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Carnival567

Thanks Carnival567. I have a CT scan in a couple of weeks and they'll make a decision based on that in terms of whether transplant is still an option and when off the back of that. In the meantime, I can't really think about too much as I don't know what all my options are. Really hope you're well and thanks so much for taking the time to read my post and leave a comment. Much appreciated.

Oh my goodness Andy, so many curved balls. It must be so hard to get your head around the findings from your consultation.

I assume, rightly or wrongly, from your Arsenal cap would suggest you live in London and I am wondering if your present team are at the Brompton. Re the bronchiectasis, I would normally advise referral to a respiratory consultant with a special interest in bronch, as from a lifetimes experience of bronch and having good, bad, indifferent and now excellent specialists, believe me it makes the world of difference. With you of course, I assume you already have a good consultant.

I will put up a link for you Andy from ERS, which is frequently updated.

europeanlunginfo.org/bronch...

I hope it covers things for you but if there is anything specific you need/want to ask or just a chat, then please fire away. There will always be one or two of our lovely bronchie friends around.

Please let us know how you get on following your next scan and medics meetings.

With love to you and your family

Cx

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to cofdrop-UK

cofdrop-UK thank you so much for your extremely detailed reply! Great advice regarding a respiratory consultant with a special interest in bronchiectasis - do the Brompton have one of those?

Thanks, too, for the link to the ERS info. I'm currently making my way through the BLF advice but will look to do the same with this :)

I have a chest infection at the moment and lots of mucus. The days are generally ok but I find the nights really tough as that's when the mucus gets stuck and causes me to cough. I'm being woken up regularly in the night and having to cough for ages with lots of mucus coming up but it never seeming to want to stop. The irritation/tickle in the back of my throat can be overwhelming at times and it takes an age to settle down and for me to then get back to sleep. I'm currently taking cough medicine that eventually settles things down but I know that it isn't a long term solution. Is this normal and what tips have you got for reducing mucus build up at night?

I've got a date now for my next scan - 12th October. I'll keep you posted on how I get on.

Thanks so much for all your help and advice. I hope you're well and look forward to chatting to you more going forwards.

If you look at the ‘about’ section you will see, as well as my mugshot, a consultant, also if you look at the (I think it’s at the bottom of the first section) there are discussions between consultants and there is another. They both specialise in bronchiectasis. And are at the Brompton. I live in Yorkshire and attend the cf/pcd/bronchiectasis team but there are some lovely bronchs on here who attend the Brompton or you could check them out online.

Once your con has referred you to a resp pysio and you have learned the best techniques and gadgets which suit you best, and you are on the correct treatment you should beable to have more control on lung clearance. Take a look at the ‘video’ section as the physios go through a few methods, although it’s best to see a resp physio in person. We are all different and find different methods suit us best. That also goes for PEP gadgets. In the meantime, and I know this method is for kids but worth a try if your young at heart media.gosh.nhs.uk/documents...

Good luck

Xx

peege profile image
peege in reply to cofdrop-UK

Bless you my darling, I knew you'd be great 🤗

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to cofdrop-UK

Amazing! Thanks so much cofdrop-UK, this is great advice. Lots to get my head round but determined to do all I can to live with the bronchiectasis to alleviate some of the other lung disease and reduce chance of infection.

I'll keep you posted on how everything goes.

Wishing you the best mate, hoping you get a break!

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to ck101

Thanks ck101! I hope I catch a break too. Going to need to be a series of breaks really in regards to transplant but that would be my preferred option providing it's still available and the risks aren't prohibitively high.

It’s good to see you. I’ve wondered how things are going and thought you must be busy with your work. I’m sorry to know things have been so tough for you. Wishing you all the best for your appointments. Thinking of you and your family 🌈

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to HungryHufflepuff

Great to hear from you as always HungryHufflepuff ! Thanks for reading and replying to my post! Things are certainly tough at the moment and there's going to be a lot to think about in the coming weeks but it's great to know that I've got the support of my friends, family and the wider respiratory community here on Health Unlocked behind me whatever happens!

Hi, I have had bronciactsis for the last 4/5 years, it's a pain, I've been sent to a new consultant that deals only with bronciactsis. What a difference he changed my seratide to fostair, I take ventolin then saline nebs next fostair and last but not least I use my AerobiKA with the exercises from the physio. What a difference shifts a lot of the muck, also I have given up all caffeine, tea, coffee, fizz and chocolate. The only time I have caffeine is if I am very clogged up the I have an ordinary cup of tea, don't ask my why even the consultant can't work it out but it brings the muck up. He changed my rescue back from amoxacilin to co-moxiclav and 5/7 days to 10 days worth. What I difference. Good luck. 👍

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Egpa

Hi Egpa sorry to hear about your own challenges with bronchiectasis. The constant mucus and feeling that you're bunged up with the slime in the back of your throat really isn't pleasant is it? On top of the fibrosis which is slowly reducing my lung capacity it's really beginning to have an effect on my energy levels now...

I've only just been diagnosed so no additional treatments discussed yet. However, it's reassuring to hear that the Aerobika, physio and other meds are helping with the mucus. I'm already on the co-amoxiclav actually as that's the one I've been prescribed already by my treatment team for when I get infections like the one I've got at the moment.

Interesting to hear that you've given up chocolate, fizz and caffeine. Are they known to make the bronchiectasis worse or have you just done that as part of an effort to lead a more healthy lifestyle generally?

Egpa profile image
Egpa in reply to dodgylungrunner

I was told by my RA consultant and also by my bronceactsis consultant caffeine does not mix with mtx injections💉 as it make me feel sick. But not having it helps so I carry on doing it. Good luck, hope you feel better very soon. Chin up.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Egpa

Interesting. I'm not on mtx injections but will certainly ask about this should that be prescribed for me going forwards. Beginning to emerge out of the other side of the current chest infection after 2+ weeks on co-amoxiclav. Really hope you're well and thanks so much for all your advice.

Egpa profile image
Egpa in reply to dodgylungrunner

Just had a phone call from doctors, the sputem test I sent in as a nasty bug in it. Back to 2 tablets twice a day for 14 day. Here we go again.

Hi Andy, lots of things for you to process but getting the chest infection under control with antibiotics and prednisolone is a long slog.being a bronchiectasis sufferer myself the regime of clearance of mucus is a must to get you back to health.my goodness what a lot for you to deal with right now, hopefully you can use a clearance device to help you with thatRegards boxermad

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dodgylungrunnerBritish Lung Foundation in reply to B0xermad

Hi B0xermad getting the chest infection under control is certainly the most immediate priority. I've already been on antibiotics for 2 weeks now and whilst the gunk coming up is no longer that horrible yellowy green colour, I'm still producing specks of yellow in what is still very thick mucus. Patience I guess is the key but I'll need to get more anti bios as I'm about to run out. I find it really hard when you're left to your own devices with the management a lot of time as I don't know what I'm looking for a lot of the time and when to make certain calls. Hopefully I'll get better at this as time goes on and I get more familiar with the disease.

Lots to deal with and I'm hoping that in time I'll get told about physio and offered clearance devices to give me some additional help in shifting the mucus.

Thanks so much for all your support. I hope you're well currently?

Egpa profile image
Egpa in reply to dodgylungrunner

I find that Physio, nebs and clearance devices help loads. I had a very nasty big in my left lung that took over a year to clear up, so many meds I rattled lol.

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation in reply to Egpa

Very keen to try all of these going forwards should the treatment team give me the all clear to give them a go/prescribe them. What's a 'big'?

Hello Andy, I was diagnosed with bronchiectasis 2 years ago, so I don't know nearly as much as some of the people on this site. Self help is important. I do the Active Cycle Of Breathing morning and evening- downloadable from the BFL web site. I also use my trusty AeroBika when things are really rough- it brought up tons of gunk (that's what it felt like). Perhaps contacting the BLF nurses before starting exercises would be a good idea. (I was told about huffing by a decidedly non medical person when my useless surgery was dragging their heels.)We are also supposed to indulge in gentle exercise when we're up to it. As Egpa pointed out you need a long dose of a strong antibiotic to deal with bronc infections- have they given you a sputum test yet? Some GPs and other medical people do not know as much about bronch as they should. It takes a long time, but infections can be brought under control. Good luck and best wishes in dealing with this.

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dodgylungrunnerBritish Lung Foundation in reply to Alberta56

Hi Alberta56 . Sorry to hear about your own bronchiectasis diagnosis. It sounds like you've been doing lots of the right things from what I've been reading so far and completely agree that self-help and management is vital to getting on top of the mucus build up. The AeroBika sounds like something that is essential to helping out when things are particularly tough. Is this something that you need to get prescribed or something that you can order independently of your doctor?

Contacting the BLF nurses is definitely on my to-do list and I will certainly look to give the breathing exercises a go going forwards. That and trying to exercise as much as I can within the limitations that I clearly have...

I provided a sputum test at my check up on Friday so I'm sure that the transplant team will feed that on to my treatment team that deal with the day-to-day management of my lung disease which will now include the bronchiectasis.

I have an appointment with my GP on Thursday and doubt highly that they will have much idea about bronchiectasis but I'll certainly push for what I need like the sputum tests, rescue packs and getting tested for NTM.

Wishing you all the best going forwards and thanks again for all your advice.

Hi Andy, My AeroBika was prescribed by my GP at the request of my respiratory nurse when I had a bad infection last year. You can buy them on the internet, but they seem to cost about £60 these days, so obviously better not to. Some people like better a similar gadget called an Acapella (I think). Some things work for one person not another. Littlepom, who knows more about bronch than just about anyone on this site, has always insisted that we have to tell the medical professionals what we need, because most of them don't know enough about bronch. I was put on Azithromycin after that bad infection. Touch wood I have not had another one for a year, though it took a long time to get over it. Best wishes again. You sound a determined sort of chap, who won't let this disease beat you down. 👍👍👍

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dodgylungrunnerBritish Lung Foundation in reply to Alberta56

All good to know Alberta56, thank you! I was put on azithromycin previously but had to stop due to tinnitus. They moved me on to doxcycline as a baseline antibiotic but only in the winter months. I'm about to resume that now but it does mean I have a solid few months in the summer where I don't have that baseline protection.

Hope you're well and have a great weekend!

Same to you.

Hi Andy. I don't have bronchiectasis so can't help there, but I just wanted to wish you well. Please let us know how you get on. John

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dodgylungrunnerBritish Lung Foundation in reply to johnderby

Hi johnderby thanks so much for reading my post and leaving a message of support. Means a lot. I will of course keep you updated on how I get on and wish you all the very best yourself going forwards. Take care.

Andy

Hi, I’m new to this site, usual hub PCD, that includes bronchiectasis, rare condition born with. I was diagnosed with bronchiectasis and PCD at age 31, now have partly collapsed lung on to other lung. However it’s only recently it’s caused problems, but age may have something to do with it, I’m 86. Up to few years ago was doing lots gardening, and riding small motor bike. My late husband rode big bike and I was pillion, tried to avoid lots of exhaust fumes, exploring country lanes. My husband died of prostate cancer after 14year battle not only with the cancer but with NHS because his blood test PSA readings were always very low and so his treatment was delayed. I’m now aware that the senior people know the PSA test is unreliable. Hope by including this I can save life or two. Best wishes, hope this helps.

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dodgylungrunnerBritish Lung Foundation in reply to Morrison10

Morrison10 my goodness I cannot believe that you've been living with bronchiectasis for so long. I'm sorry that you've had to manage it for so many years but at the same time I'm really encouraged to hear that you've done so well, for so long. Just goes to show that careful management can do! I'll certainly look to do all the right things but suspect that the fibrosis that is also happening will mean that while I can manage the bronchiectasis, the scope of things that I will be able to do will disappear faster as I'll have less and less unscarred lung. Hence the need in my case for the transplant which has been complicated by the bronchiectasis as it has taken away one of the options which was to replace just one of the lungs and leave the other where all the damage is currently. The infections that the bronchiectasis brings makes such an approach far too risky so they'll need to replace both lungs if they can find a match. However, that's complicated because the right lung has shrunk considerably so any lungs that are a match will have to see one of them being cut up to fit the space that I have remaining which brings further risk and complications.

Really sorry to hear about your husband. Must be tough sometimes without him and you must miss him a lot. Wishing you all the best going forwards and thanks again for your message.

Hi Andy, I am so sorry to hear about all your health problems. I too have Bronch and I am now in my 10th year (I amd 75). I agree with everything everyone else has said but no-one has mentioned Azithromycin. If you are offered these tablets 1 x 3 times a week I urge you to try them. Since I began this regime I have had a maximum of 1 infection per year. I call it my miracle drug. My production of phlegm is almost nil, I do not cough and I feel so good. Please keep in touch and let us know how you get on. Take care of yourself, Maximonkey

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dodgylungrunnerBritish Lung Foundation in reply to Maximonkey

Hi Maximonkey sorry to hear that you have bronchiectasis though very pleased to hear that you're doing so well - certainly cause for encouragement. I'm currently on doxycycline in the winter months as a baseline antibiotic to help provide a bit of further protection but i'll ask about azithromycin as it sounds like it's been extremely effective for you. Thanks so much for the tip!

Hi dodgylungrunner, you are very welcome, good luck. Maximonkey

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dodgylungrunnerBritish Lung Foundation in reply to Maximonkey

Thanks Maximonkey same to you!

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dodgylungrunnerBritish Lung Foundation

Hi LAuser78 I fear COVID and the delays that have resulted will have an enormous effect both on diagnosis and treatment of all kinds of things. Lots of conditions will have progressed unmonitored while others will get diagnosed when it is perhaps too late to be abel to do much about their condition. Sadly that is the world that we live in currently and an unwanted additional knock on effect of this horrible, horrible virus that has already taken so much.

Very best of luck and best wishes for everything going forward.

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dodgylungrunnerBritish Lung Foundation in reply to Dedalus

Thanks Dedalus, I'm going to need it I think!

Hello Andy,

It's been a while 😃 . I am glad you are hanging in there although things are difficult. It's always hard to learn there is something else going on so I can only imagine your shock. I truly hope you are still a candidate for transplant. And if they say you are then I'd say get your foot in the door before it slams in your face, remembering that the wait time in the U.K. unlike across the pond is significantly longer, although some people get lucky. Good for you for reducing your working hours. It will free up more time to look after yourself and spend quality time with your loved ones, as well as maintain your fitness for what lies ahead. I hope you will update us. Thinking of you.

Cas xx 🌿

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dodgylungrunnerBritish Lung Foundation in reply to Caspiana

Great to hear from you as always Caspiana! Been a rocky week but I'm hanging in there and the support on her has been amazing! Over the initial shock now and have made the decision to keep going and try and worry not too much more about everything until the docs are clear on the bronchiectasis and what my options are regarding transplant. In the meantime, I'm focusing on kicking the last of this chest infection in to touch and reading up about bronchiectasis.

I had hoped that I wouldn't need a transplant for a few years yet but I agree that leaving it too much longer (if still available) is a big risk and it might be time to bite the bullet. I'll know more in the next few weeks and will need to weigh up all my options but my gut feeling is that it could soon be time to go for it.

Thanks as always for all your support. I will of course keep you updated xx

I hope you feel better soon Andy. And yes, please let us know how things go. xx 🍀

Hi just read your post 🥰I am so sorry to hear of your difficulties and the shock after your recent review. Great you have managed to find a work/life balance. I am ‘merely’ an asthmatic and hold up my hands to having any useful information to give you, unlike the many well informed and supportive guys on here. But I DO send you all my best wishes at a time when things are so difficult. I will be thinking of you. xx

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dodgylungrunnerBritish Lung Foundation in reply to rachelmi

Hi rachelmi. No such thing as a mere asthmatic - living with asthma is hard too! Really appreciate you getting in touch and wish you all the best going forwards. Have a great weekend!

I can’t supply anything relevant on bronchiectasis but wanted to send you all my best wishes for this stage if your journey. Including your decision about work you do seem to be facing your lung condition with positivity. It’s not easy but it helps. Take care

Grace

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dodgylungrunnerBritish Lung Foundation in reply to Walkwalkwalk

Thanks Grace, I really appreciate that! Positivity is key and to be honest is the only way that I know how to deal with these things. It's how I was with my bone marrow transplant many years ago and that turned out ok. Just hoping transplant remains an option. If it isn't then it'll take some re-adjustment that's for sure as I'd always had it in the back of my mind as an option to fall back on - I was just hoping that I wouldn't need to make a decision on that until further down the line. I'm only 36 (just!)

I can’t help either with knowledge on Bronc as my bronh is mild so I am told … my prob is stage 4 COPD.

I just wanted to add my best wishes to you and look forward to reading positive results for the future transplant in due course. Take care 🙏

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dodgylungrunnerBritish Lung Foundation in reply to Gladwyn

Gladwyn I'm very sorry to hear that your COPD has now reached stage 4. How are you bearing up? It frustrates me so much that we haven't made any progress in to stopping the development of lung disease. In the end it all comes down to the level of investment in to research as research holds the key to unlocking new and better treatments. The BLF and AUK are fighting hard to get further money committed to respiratory research and I'll never give up doing my bit to help them in that regard.

Wishing you all the best going forwards and thanks again for your support.

Thank you and likewise back to you. 😊Your commitment to respiratory research is fantastic. I admire your strength and determination. Bless you 😘

My my, what a lot for you to deal with. I hope you can get some clarity on making the necessary decisions and get good results whatever. On a lighter note, I see your cap says Arsenal, are you a supporter? My nephew, Graham Rix, used to play for them, and England in his time. Retired now and coaching. I wish you all the best.

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