still in denial?

I was diagnosed with bronchiectasis in May but the respiratory nurse does not think it is too serious, but then she doesn't have it!! I suppose it's relative?! I vacillate between thinking it is/could be really serious and thinking I should just carry on 'as normal' and hope it won't get any worse. However, today, the cough is certainly much worse and am bringing up the dreaded green stuff. I don't know where to go for good medical support. (There is nothing much in East Sussex where I'm renting at present.) I could move anywhere in the uk. Does anyone know where is the best place to live for climate and good specialist care? I have a budget of £100,000.

Thanks everyone - it's great to know someone is listening.

22 Replies

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  • Hi swimmer, sorry I can't advise on geographic location. But you seem very unhappy with your nurse. Have you not seen a consultant? May be worth asking for a referral if not. Good luck.

  • The consultant is a strange individual - I think he's very over-worked and he has no 'bedside manner'. NOT an easy person to talk to! Think I should ask for a second opinion from another consultant.

    Thanks for your concern.

  • I would definitely ask to be reallocated. I did and am very glad I did so.

  • Australia or new zealand even egypt would be cheaper

  • Australasia sounds perfect, if only they would take a 58 year old wrinkly with a chronic cough...

  • By the sea? they say that the air is good for us who have a lung condition.

  • Thanks gillyj

    I am renting a room in Hastings but can't afford to buy here. Have also tried Dorset but still too expensive.

    Will keep investigating. If you hear of anywhere you think might suit, please let me know.

  • Green stuff needs antibiotics swimmer, please get it checked out asap. You could buy a whole street near where live in South Wales for £100k!!!!! If I were you I would take gillyj advice and move near the coast. The sea air is a definite plus point and just therapeutic I reckon.

  • Thank you for your advice. I am renting in Hastings but the respiratory support is 'thin on the ground' here and property is surprisingly expensive. Any suggestions for a cheaper location with the advantage of sea air and good medical support? I have tried Bournemouth and Poole and they are both too expensive...

    Being without a reliable place to call home and a network of support is adding to my ails, I'm sure.

    Thanks again x

  • Try coming a bit more northen, east coastish it's bound to be cheaper, Wish I could move to the coast but all my family and support are here in the Midlands, at a young 60 I don't feel like starting out alone again.

  • Thanks for your suggestions gillyj. Iam not far off 59 and I know exactly what you mean about starting out alone. I have been looking for somewhere to live for 22 months now with the intention of down-sizing and even retraining but then I got very ill with bronchiectasis... Am now thinking of returning to the place I moved from - West Dorset as I have a good support network there. Only thing is -I have alot less money than I left with (spent loads paying for accommodation for both myself and my 22 year old (she's still at Uni in London). Still, I could possibly get something small - I don't need much as long as I have good support.

    Wish me luck!!

  • Hi you could try Torquay where I live. The medical support seems ok.

    For 100,000 you could buy a flat in a nice area or a large flat in a not so nice area. You wouldnt be able to get house.

    The temperature here is generally a couple of degrees warmer than most of the country and the sea air is certainly fresh!

    Bev x

  • That sounds enticing!

  • Lol EmmyH thats the only thing it does have going for it - the shops are crap, so is public transport and as for jobs....hopeless.

    So I wouldn't pack your bags just yet. :)

  • Thanks Bev

    Unfortunately, I don't have the energy to travel far at the moment, but will definitely keep your suggestions in mind for the future.

  • I had very good medical backup in East London but the air quality was poor. I moved back to Dorset where I grew up and doctors are fine but I still travel back to London to see my consultant every three months. It's expensive on the train but worth it as I'm not keen on giving up access to a centre of excellence. Air quality in Dorset is hugely better and has helped a lot, but I've noticed on holidays to Cornwall that the sea air seems even better. However, I've made friends and settled in to village life, and the children are at good schools with lots of friends, so not keen to move again at the moment.

    It's very important to look after yourself, even if the bronchiectasis is mild at the moment, so that it doesn't get worse. Clear those lungs every day, eat well, and exercise lots. I've recently started cycling again and though I can't always manage the hills, I find the effort helps clear my lungs better than walking.

    Property-wise it's difficult, as you've realised. The south west is no longer cheap. (We're renting.) You could research on one of those property websites such as Rightmove. Have you considered Wales? A beautiful place. We went on holiday to South Pembrokeshire this year and thought it lovely. But I can't comment on community (v. important) or medical issues.

    Suppose you could stay where you are as coast is best, and just change your GP practice! Best of luck.

  • Thanks EmmyH

    I am considering moving back to Dorset. Lived there from 1995 to 2010. Not sure if I can afford the property prices now though...

    Am too tired and down at the moment to consider Wales or somewhere I'm completely unfamiliar with - I am on my own with no family or friends to help...

    I will see if I can get a referral to a specialist hospital in London and hope that improves my ability to cope and so create some sort of quality of life.

    Thanks again x

  • Dorset is one of my favourite coasts, I used to love fossil hunting years ago, its so beautiful too.

    I wish you luck swimmer, I am sure you will come to a conclusion that is right for you. :)

  • Thanx gillyj

    I really appreciate your good wishes.

    Kind regards

  • Hi swimmer, before you up root yourself again, have a talk with your local health authority tell them of your concerns you never know they could move you over to people who have a bit more compassion & understanding with your situation. If you have already been down that road then try the east cast coast, but before you move makesure that where you move to the Doctors there are able to take you on.

    Hope you get the help you need.

    Redmod.

  • Thanks redmod

    Not well enough to keep searching so will have to go back to expensive Dorset and spend some of my very hard earned cash renting a tiny apartment. But at least I know the medical care there is reliable unlike Hastings where I am renting a room at the moment. It really is deprived here - poverty, low standards of education and so, consequently, there is a huge drain on the NHS. I went to three Doctors surgeries and none of them are taking on new patients!! So wish I had had your advice earlier. It just never occcurred to me that I wouldn't even be able to get a good GP!

    Kind regards

  • Hi Swimmer

    I do hope you will be able to live close to where you know you can receive the most support.

    Re the bronchiectasis. The diagnosis must still be quite raw for you and I am not sure how much information or help you have had from consultants and medical team. The comment from your nurse, whilst she was probably trying to reassure you, was unhelpful. Whether bronchiectasis is mild or severe our main aim is the same, that is to try and prevent any further damage. How to do this:

    Firstly, if you haven't already, you will need to get a respiratory consultant who has a special interest in cystic fibrosis/bronchiectasis. Check out the hospitals where you are hoping to move to or Dr. Foster. If you are planning to attend a hospital in London, you would be wise to chose The Brompton.

    You do not mention if you have been taught any physiotherapy in order to clear out the mucus from your lungs on a daily basis. This is the most important thing we can do for ourselves, and although it is a pain in the a***, it gives us some control in helping ourselves. So your consultant should refer you to a respiratory physio, who as well as teaching you methods of mucus clearance which suits you, will also show you different gadgets such as the acapella or the flutter and you should see between you what works best for you.

    If you don't normally bring up green gunk or it is darker, nasty tasting or you feel ill with it, you should see your gp for antibiotics asap and if you do clear out your mucus or nebulise, try to do it more frequently that you normally do. You might want to ask your GP if you can send off a sample to see what bugs you have and if the first lot of abs don't do the job, you will then both know what the bugs are sensitive to. Do you have any antibiotics at home which you can start if an infection kicks off during the holidays or weekends? If not you may want to ask about having them.

    Excercise is really good - do as much as you are comfortable with. You can carry on as normal, but it will be a new normal, but just hoping it won't get any worse is not an option. You must be proactive.

    Good luck with the move and getting good medics. PM anytime if you wish. Had bronch 64 years and I am still learning new stuff all the time.

    XXX

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