I joined this forum some time ago, and this is my first post. I have found the advice given by the members particularly Littlepom extremely helpful. I was diagnosed with mild bronchiectasis in 2017. After a long period of contracting chest infections I experienced secondary infections resulting in episodes of both pleurisy and pneumonia. My consultant changed my diagnosis from mild to moderate. The problem I now have is a poor response to vaccinations. Has anybody been given Pneumovax 23 and Prevenar 13? Tests have shown a poor response to both. I don't have the antibodies to fight pneumonia. Has any other members been diagnosed with immunodeficency and how has it been managed? I try to deal with the condition as best I can chest clearance three times a day, exercise, healthy eating etc but worry an exacerbation next winter could lead to another bout of pneumonia.
Cloudy1
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Cloudy1
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Hi Cloudy1. I am sorry that you are having such difficulties. I think that this is a cart before the horse situation. It can be a failure of the immune system and the resulting infections which lead to the bronchiectasis. Not the bronchiectasis which leads to the immune system failure. Importantly, you need proper management of your bronch. As you say, this involves scrupulous emptying of the mucus in your lungs to prevent bacteria from breeding in the lungs and the correct antibiotics in a strong enough dose for a minimum of 14 days when an exacerbation takes hold. As your immune system is compromised you need to avoid anyone with any form of infection and unfortunately vaccines do not seem to be as effective for people with compromised immune systems. I find it strange that your consultant simply altered your diagnosis but didn’t initiate treatment. Do check that this consultant is a bronch expert as general respiratory consultants do not have enough training or see enough bronch patients to know much about it. If the consultant does not specialise in bronch, look for one in your area and insist that you are referred. Also GPs know virtually nothing about bronch and need the advice of the expert to know how to treat you. We bronchs have to be very proactive in our own interests I’m afraid.
Thank you for your sound advice Littlepom. Unfortunately, I have no broch experts near where I live. I would have to travel to London. I have asked my GP for a referral and I am awaiting her reply. As you know it is a major operation to get them to do anything at the present time!
Have you looked at the websites of any big teaching hospitals closer to you. This is usually where the bronch specialists are. I do hope that even if you have to travel, you can get under the care of one. It really is so important for us and our GPs to have this expertise. Oh what a struggle.
Is The Brompton the nearest big hospital to you. I only ask because they are so busy and there are centres around the country with very good bronch specialists. I am with the QE in Bham. Where do you live?
Hello Littlepom, I live in Essex. After searching several websites I came to the conclusion the Royal Brompton was probably the nearest to where I live. I would be interested to know if anybody knows if there are any in the East Anglian area. Once again thank you for all the help and advice you give to us broncs.
Depending on where in Essex, your nearest specialist unit may be Papworth Hospital in the south side of Cambridge city. Papworth is now even more closely linked with Adenbrookes General Hospital having moved from the countryside of North Cambridgeshire 4/5 years ago. Both Hospitals have world class reputations.
My bronchX consultant there, up until around 3 years ago was Helen Barker, an excellent and caring lady with lots of expertise. I'm an expat living in Thailand and covid has kept me away from the UK for longer than I care to think about. Luckily, all the covid precautions, mask wearing and reduced social interaction, have resulted in me having no exacerbations for that period! Thrice weekly azithromycin and daily N-acetyleine have probably also helped.
Hope you can find a good bronchX consultant. It makes such a difference on your outlook about life and the condition.
Only one i know who are real experts are either london or newcastle and you might need a referal from your respiratory consultant to get to see them and with covid there might be a long waiting list to see them
There are far more than those 2. My consultant at the QE in Bham wrote the current guidelines for bronch and her clinic us excellent. Also Leicester and Leeds have good bronch depts as does Southampton.
I come under york since they took over scarborough our hospital has gone down half the stuff like heart,breast clinic have gone to york. But they are building a new and larger A&E dept at the moment the a&e drpt is too small and theyve put the our of hours gps up there as well so at ghe monet its pack outI did ask my gp if shecould see another respiratory consultant as im hoing around in circles but she refused and said ill be vetter staying where I am otherwise I'll be waiting a long time. But i fell like nobody is trying to get my asthma under control it seemed to have got worse since 2019 when i had z year of chest infections which ended up with heLth care associated pneumonia .
Which i think it could ve been covid it was end of november begining of december before they knew sbout it but well never know. Just getting fed up with not only my asthma ive got osteoarthritis with chronic pain so im not grtting much sleep so roll on friday when i see my gp f2f.
I'm sorry that you have so many health issues. As far as your chest is concerned your GP cannot refuse to refer you to the bronch specialist you choose when you find one that you are willing to travel to. It is a dereliction of their duty of care towards you. Beginning the complaint process often concentrates their minds.
Hi Littlepom, thanks for your reply. I have had a reply to my letter from the G.P. informing me The Bromp is a tertiary referrral centre and G.Ps cannot refer there only hospital specialists. I am now looking in to that area, and hoping for a better result. As usual the battle goes on to access the help all us brochs need, but these days is so hard to obtain.
I have just looked at the Brompton’s website. It states that GPs can refer directly to any consultant using the e referral system. Private patients can self refer.Your GP is either badly informed or lazy. Take your pick.
Yes ive had the courses of both with poor response.had no immunity to HIB but responded well to vaccine,altho was desperately ill for 3mths with hib pneumonia ths yr + struggling so obviously needs doing.iid ask for appointment with immunologist .Rather than worry whats ahead,id use time to focus on enjoying now+ perhaps lookinto supporting yr immunity.i take supplements + eat plenty of fruit+veg.
Ru on carbocysteine to thin mucous and a prophylactic antibiotic?
I wa refered to imunologist for allergies including antibiotics never ssy her him did over phone and sent a letter to gp asking them to do bloods but never mentioned what blood phils the nurse needs to use so the nurse rang path lab up the could tell her rang the immunologist still no hoy so she had to ask oner if her colleagues in the surgery then i had to go back as the nurse didnt take enough for all the tests.That was waste of time told me i wasnt allergic to any pollen.inc treen weeds grass and fungi as for the antibiotics ge said that when i grt put on the antibiotics its the infection whats reacting to the antibiotics and gives me hives and told my dr to try me with penecillin but increase my fexofenadine and also give me an extra antihistamine for the extra antibiotics but gp hast bothered i dont want to risk it incase i do have a sevre reaction so at moment i can only take three types of anti biotics unless in hospital and the can give me another one.
Its up to you if you want to see an imunologist but be warned you might have to wait a while or do it over the phone
Thanks for that Pipswhips. I am pleased to say, I have at long last been referred to an immunologist. That is a step in the right direction. So sorry to hear about all the problems you have experienced. Hope you a feeling better.
Thanks just want to know whats shown up in my ct scan and it will be 4 wks on monday since i had it so im hopping my regular gp i see has got results from consultant.
Hi yes i have Hypogammaglobulinemia and was diagnosed after referral to an immunologist by my chest consultant because of constant low Ig levels resulting in constant chest infections after about three years of various tests ( vaccine challenges)i now have immuoglobulin infusions every three weeks and after three years of infusions i have not had a chest infection since it has given me a new lease of life hope this helps kind regards Vernon
Ask your hp if you got an iron diffency they can do a blood test and test it for it and if you cant torrate iron tabs or medicine you can have iron infuusions in out patients but you be classed as in patient it takes about an hour to go through and make sure your ok before incase of any side affects but i havent had any when i had then also the redo your blood pressure before ypu can go home.
Have you had your immunoglobulin levels checked? Like inhaler2 I have Hypogammaglobulinemia but I self inject immunoglobulin every week. Mine is secondary to rituximab. I also use a nebuliser twice a day to keep the pseudomonas away. I’ve been infection free for a few years but I also avoid people with colds.
I would definitely asked for it to be checked if I was you. If it is low you have to be referred to immunologist to see if you qualify for replacement therapy as it’s very expensive. I hope you get some help soon.
Hi Cloudy1, I am sorry you are still experiencing problems. When I was first diagnosed I was immune depressed and was sent to our local Immunology clinic for yearly injections. These injections are very expensive so they are only given to a few very lucky people. After the 1st one I was left for 9 months and then my immunity was checked again, it was good news and as I had been put on Azithromycin and had not experienced any further pnuemonias I did not need the 2nd injection. I have been well now for the past 11 years. I have no experience of the meds you mention but I am sure someone on the site will be able to help. For your reference, after the 1st injection I was class as mild Bronchiectasis and have remained the same since. Do ask you Consultant if Azithromycin would help you. It does have some minor side effects but after the first 5 weeks or so I have not experienced any other side effects other than after 6 years I developed Tinnitus, but as my doctor said better deaf than dead. I am not very deaf by the way, at least no more than any other 76 year old. Good luck and take care, Maximonkey
Hello Maximonkey, thank you very much for the useful information, I am glad you have benefited from the treatment you have received. It was interesting to note you have not experienced any further pnuemonias. Keep well, and take care in the forthcoming heatwave.
My consultant thinks i might have that, thats why he sent me for a scan which i still havent heard anything im hoping my gp has heard something on friday when i see her as im waiting for either a phone call which i hate or snail mail.
I cant comain about it she just thinking of the wait and it was about seeing just another respiratory consultant locally thats all not only that dhe is very good she has asthma herself and she sees me every month f2f just to see how im doing and xheck up on me as well.I ws let done by one gp the year i ebded up with n pneumonia she promised me hhat she eould see md through the winter but would be it but that never happened. You see she ddcided to merge 4 surgeries into one but decided it would be yo much sorting out the surgeries and seeing patients. So yhe one i see now is a lot better do i cant reslly complain about her.
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