I've struggled along with chest problems for 3 and a half years to be diagnosed last week with bronchiectasis. As it's taken so long to get this far I feel I need to now aim high and get the very best guidance straightaway. So I'm willing to travel anywhere in UK, even further if needs be, if I can get to see a really good specialist who can point me in the right direction without any further delay. I'm willing to go private too.
I'm reading up as much as possible but until Friday I hadn't even heard of the condition, and it's only today that I think I can actual pronounce its name.
I would be very grateful of your experience and guidance here on who is/ are the best people to see.
Thank you very much for your time.
Catherine
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Sorry to hear you have bronchiectasis but so glad you are being very proactive and making sure you get the best bronch service you can. Perhaps you could let us know the name of a large city you can access easily, as it may be there is a good consultant close. Failing that there are a number of excellent respiratory consultants with a special interest in cf/brnchiectasis throughout the country. It is patchy though and you are right to want the best for you. I have over the years had good, bad indifferent and excellent, as many of us have who have had BE for many years, before the internet, so you should be lucky and get sorted.
We would have to pm any names of consutants to keep within the guidelines of BLF, but we are more than happy to share any information we have.
Thank you very much cofdrop for you kind reply and for your thoughts too mrsmummy.
I'm near Sheffield and willing to travel. From what I can see so far there are some special clinics in London, Manchester, Leeds, Leicester etc and I can get to those cities fine. At the moment my thoughts are if the best consultant is in Brompton I would very much like to see that particular consultant and take his advice from there perhaps?
I'm going to the event detailed below on Friday, not sure if there are any spaces left, you'd have to enquire.
I believe its being recorded and will be available to view on line shortly, could add to your knowledge of the condition
This June, you're invited to attend Medicine and Me, a totally free event in London for people with bronchiectasis, as well as their friends and family. It's held in conjunction with the Royal Society of Medicine and Bronch UK.
Reserve your spot on Friday 16 June by emailing medandme@rsm.ac.uk, or call 020 7290 3846
I have had Bronchiectasis for 20 years. I am 71 now. It took 5 years to diagnose this condition! My doctor then, didn't refer me to a Lung Specialist but one of the other doctors in the practice did! I thank him for that.
Please try not to worry, once they get you on a medication plan and you stick to it, like I have, you should have a reasonable normal life. Yes, I get tired and have learned to pace myself. Good luck x Lynn
I'm really keen to get sorted as soon as possible, being worried how it may get worse if I don't do my best to sort it quickly.
Thank you
The Brompton has a good name historically because, along with the QE in Birmingham they were one of the first centres to specialise in bronch and it's research. Things have changed and although many are very happy going there ( we are all usually very loyal and attached to our particular specialist) there are other centres which are carrying out ground breaking research and have good bronch clinics. Newcastle, Leicester, Liverpool and Birmingham are probably your closest centres. Hope that helps.
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I go to the Brompton & it's great but why travel all that way when you have this wonderful specialist lung unit so much nearer uhsm.nhs.uk/services/specia... I'll message you with the name of the consultant I would want to see there, if I were you
You star! Yes I feel Wythenshawe could be great for me. I'll look out for a message. Please bear with me. New to this and not sure too how the messaging etc works!
Brompton is reputedly no 1. Papworth Hospital twixt Huntingdon and Cambridge (moving to a new purpose built unit of Addenbrookes Hospital south of Cambridge City Centre within the next year) must be no 2 then!
Best known as a preeminent heart hospital - second heart transplant ever to be performed after Christian Barnard's ground-breaker in Capetown was here. Papworth was the first to do a combined heart and lung jobby, which is what made me check out its website 4 years which made me realise they also had a very significant Lung Defence unit.
Ever since, this Unit has taken care of my lungs thru an initially tortuous path of correcting for a wrong diagnosis of lung cancer (by a Yorkshire-based consultant as it happens) to a correct one of a rather rare lung 'Malt' lymphoma which was sucessfully treated by radiation therapy directed by a lymphoma specialist oncology consultant allied to Papworth's Lung Defence Unit and based in Addenbrookes/Cambridge Nuffield Hospitals.
My lungs were still generating sputum so further analysis determined that I had bronchX.
What's great about Papworth for me is that they work on you as a team of specialists but coordinated by a bronchiectasis specialist. I have. In addition to the lymphoma guy and a consultant oncology radiologist I have had sessions with consultant immunolgists, pysiotherapists and parmacologists - all from within or allied to their LD unit. Tomorrow I am seeing the immunologist consultant for my annual MOT and (at the team's suggestion) an ad hoc once over of my heart from one of the Papworth heart specialists.
What is outstanding is that at various strategic review or decision times they tell you that your case/condition will be discussed at the next Thursday am Unit team meeting and it is clear that ideas have been coming from the collective wisdom and experience of a range of specialists/disciplines.
I don't need to name my main specialist as I'm confident they will give you great team care.
Message me if you want names/more details of my treatment/detailed costings (still have all the bills which were sent to me throughout by my Insurer). Get to me very quickly if you want me to ask them any questions on your behalf later tomorrow afternoon -Tues 13th.
PS good luck from a (fellow?) Yokshireperson! Born Donny, educated Carlisle and Essex Uni. Career Leeds, London and US. Currently having a second life in Thailand and back staying with my Cambridge-living sister for a week so as to visit Papworth again!
Sorry for the delayed response Robin. I sent you a response through the member to member private message facility. Look for the bell icon at the top pf your page when you go onto HeathUnlocked. If it has gone black then you have my message (or some other notifications or messages!). Whatever colour, click on the bell icon and see if you see me!
Ipogle I'm sorry. I haven't been there but my worries are I've been going to many appointments over the past 3 and a half years and only by my asking for a scan has this been found. I'm now out of my depth and feel I need to know that I'm putting my health in the right hands. I hope you're feeling ok.
Hi Catherine, I too have bronch and I live on the Wirral, Merseyside. My consultant is excellent and has been there for me at every stage, both before diagnosis and after. I have an emergency medical pack for infections that flare up when I cannot get to my GP, an asthma action plan and peak flow record, I also have a dedicated bronch/asthma nurse who I can contact at any time for advice. I have been on Azithromycin 3 times per week since diagnosis. I have just had my first "holiday" from Azith so that my consultant can see how I am without this wonder drug which has saved my life. I am really very well without it. As for living with bronch, all is good, yes I get more tired than I would like but like other bronchs I pace myself and as long as I can stay well, I am happy. I am 71 years old and thought this was a death sentence 3years ago but I met a wonderful 91 yr old woman at the consultants clinic and she had had bronch since birth and was still going strong. Take heart and read everything you can on bronchiectasis, blog people with queries on this site and you will soon be sure you are receiving the best medicine possible. Good luck and let us know how you get on. Take care Maximonkey
Not sure if you will see this as I know the post is 10 months old. But I was wondering which hospital your bronch/asthma nurse is based at - I am also on the Wirral but go to Broadgreen to see mine. I would love someone local to be able to contact for advice, your nurse arrangement sounds ideal. I am 66 and had Bronch since I was 11 and asthma for the last 30 years.
Hi yorkshirdterriers, my consultant is Dr Corless and he is based at Arrowe Park. I love the man he has been so wonderful during my time before and after diagnosis. I recommend you see he as soon as possible. Take care Maximonkey
Thank you so much you are a lifesaver. Is he is Bronchiectis specialist? As I am reading on the site there is a difference between respiratory consultant and Bronchiectis consultant ? Many thanks for your help.
Many thanks for getting back to me Maximonkey. I have a Gp appointment on Monday so will insist on seeing him. I am so grateful for this information. Is the Azitromycin for Bronchiectis ?. Hope you don't mind me asking. Thanks again. X
Hi, yes the Azithromycin stops me from catching as many infections, it is wonderful. My miracle drug. Hope you get to see Dr Corless asap, I believe 6 to 8 weeks is the normal waiting period. I paid privately before diagnosis to see him, it was worth every penny. Take care, Maximonkey
Hi Maximonkey just phoned Murrayfield and have an appointment to see Dr Corless on Monday at 6.30 pm. Phoned Gp surgery and asked for the referral letter which I hope willing be ready for me to pick up on Monday. Thank you so much for all your advice. I really thought my diagnosis was a death sentence but feel much relief after reading all the posts on here.
Hi, good luck on Monday. Do take a list of your day to day life. This info can help Dr Corless to assess how you are feeling. Don't leave it to memory we all fail to remember the most important things when faced with a doctor. He will be grateful you have given him info he needs to help you. How are you feeling today, are you breathless on walking, any info will help. Take care Maximonkey
Thank you so much for this information would never have thought to do that. Will do it over the weekend when I can get some energy together. Have felt dreadful every day since last October had 3 chest infections in that time. Also pleural effusion a cracked rib do to coughing so much and fatigued and breathless on exertion. Try and move myself as much as possible but my son does so much for me now. After the consultation on Monday do you think that I could ask to go on his NHS list at Arrowpark? Also someone said to apply for Pip but it is very hard to get. Thanks Maximonkey I am overjoyed that you gave me this advice to see him and so quickly too. Big hugs from me and thanks again. X
Hi, when you see Dr Corless he will assess you and your condition and decide whether he wishes to see you at his Arrowe clinic. So sorry you are feeling so unwell I am sure Dr Corless will be able to help you, whatever he offers please do try it. So glad I was able to help. Take care, Maximonkey
Hi there Maximonkey. He said my symptoms dont wholly relate to the Bronchiectis and thinks it may be due to immune problems. He asked if I had been in contact with any chemicals. I said everything stems from the flu vaccine? And off the record he knew a few people who were suffering health wise also. He wants some blood tests to test immune system. My Halo kit arrived yesterday so going to watch all the videos to familiarize myself with it all. Do you have any tips when starting out ? I am going to see Dr Corless again after the blood tests so will have to see what happens. I am so grateful for all your advice and cant thank you enough. How are you doing ? Keeping well I hope.
Hi, I am not surprised that Dr C thought it was not Bronch as you had not mentioned having had a CT scan nor had you told me who diagnosed Bronch. I too had immune problems and I had to attend the Immunology clinic at Broadgreen for a number of years, I needed injections to boost my immunity. Maybe this will be your route, lets wait and see, you will need to be a little patient but it will be worthwhile. Funny enough I attended Dr C's clinic three weeks ago and he was delighted I had been well for over one year. Oh dear, we spoke too soon, I went on holiday and caught a bad head cold which has now reached my lungs, so my asthma is not good, but thankfully I do not feel too bad and I know what to do to prevent it getting worst. Take care and do let me know how you go on, you now have a good man who will not rest until he has a diagnosis. I had to go through all the tests twice before diagnosis and I was very poorly indeed but as soon as diagnosis happened everything slotted into place and I have been given a new lease of life. Bye for now. Maximonkey
Hi gosh you have been through the mill but so glad you are feeling much better. I am a little confused though because my Gp ordered my CT scan and the report said Mild Bronchiectis atelectasis and non malignant nodules on either side. However my spirometry was 82 percent. I have a persistent cough and am so fatigued and ill he said it is something else. Maybe my immune system is depleted ? Do you know what caused your immune deficiency ? Mr C is very thorough so I am so pleased that I was able to see him so soon. In November had a pleural effusion following a chest infection then had another 2 chest infections with in weeks of each other. It hurts to breath in and I do get breathless on exertion but have lost any kind of fitness I had. Hopefully my new equipment will help me overcome all this. Thanks again Maximonkey.
Hi, I am so glad Dr Corless has made you feel more positive. He is very thorough and will not rest until he has done everything he can for you. Unfortunately, GP's in general know very little about Bronchiectasis and so you really are quite lucky your GP acted and sent you for a scan, judging by some of the blogs on HealthUnlocked some people are not so lucky. My GP was very caring but did not have a clue what was wrong with me, consequently I was in and out of hospital before I was seen by Dr Corless. I am now on annual checks with Dr C, so this shows how far I have come. I was ill non-stop for 2 years with pneumonia, lung infections etc. before Dr Corless agreed something had to be done and he suggested, if I was agreeable, to begin the tests all again. Fortunately for me the next CT scan was booked on a brand new CT scanner and Dr C asked that I be the first patient to be scanned. From the results of that scan he was able to diagnose Bronchiectasis and he put me on Azithromycin which really has saved my life. Because of all the infections, pneumonias etc. my immune system was non-existent and so Dr C arranged for me to attend Immunology at Broadgreen, I had to wait for an appointment but it was so worthwhile. I have not looked back since. I sincerely hope you are as lucky. Take good care of yourself, and hopefully you will soon be feeling more like the old you. Good luck, Maximonkey
Hi thank you for sharing that with me. I cant speak highly enough of my Gp she is very young and so on the ball. I am lucky to have have her though she leaves in August but very happy now I am with Dr Corless. So pleased you were able to get your life back on track and feeling so much better. Many thanks again you have been a life saver. Best wishes. X
Yes - Azithromycin prophylactically 3 times a week is rapidly becoming the drug of choice for bronchX sufferers who cant make the cheaper and older antibis work effectively enough for them. I've been on it for a year now and it's been very good to me. Would be interested to hear how your try-out holidya from it works out Maximonkey. I have been toying with the idea of trying to come off prophylactic and using one of the older ones again if I get a mild exacerbation.
We should not assume that once an antibi has seemed to run out of effectiveness then it's useless for all time. When I got a hospital admission exacerbation 18 monthe ago I was so feverish that I was out of it and could not persuade the Thai hopsital I had checked into to talk to my local Thai pulmo consultant and they also waited 12 hours before doing a sputum test. Nonetheless they did something right cos I was pout of there fit and weel within 48 hours.
I relayed the fact that I had been 'poorly handled' with no bronchX expertise and standard anti-infection IV antibis to a more experienced bronchX consultant (claims to have been the lead trainer of Thai pulmo doctors in bronchX a decade ago) I occasionally see this guy in one of the big international Bangkok hospitals when I do a CT scan to take back to the UK with me on my way to Papworth. He asked what it was and I said 'Fortum'. He said 'you are right that Fortum is an old general antibi and in fact we have stopped using it here' (implying big hospitals, or Thailand, not sure which). 'But, you are the third person with lung infection to mention that i am aware of that they have been quickly recovered on Fortum and we are starting to wonder whether it's coming back into efficacy; it's becoming apparent that antibis do not necessarily die a death for all time and some may have a second coming'. Maybe the world is not running out of antibis after all!
Fortum (as ceftazidime) is still widely used in the UK for serious respiratory infections. How effective any antibiotic is depends only on whether a particular bacterium is sensitive to it, and whether the individual can tolerate it.
Hi did you get to Wythenshawe? I have just read your post. I am also searching for a good consultant, please private message me if you get the time. Thank you so much Mel909
Hi, hope you got to Wythenshawe, and it was good and what you needed. I wonder if you could private message me with whom you saw, if you were pleased with the treatment.
Hi, I have been " lurking" for some time and gained a lot of very useful imformation. I have had Bronch for about 25 years, but only a year ago seen a consultant who is really helping. I am in Lincolnshire and wonder where the nearest specialist is to me?
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