I was diagnosed with Bronch March 22 with a CT scan. I am 71 and 3 years ago I was working....walked my dog twice a day and led a very active life. I am really struggling to accept that my life now is very limited.
I paid to see a Dr last August who specialises in helping people get the right treatment but then had to go on NHS waiting list to see her in her clinic.
I have had no help from GP except to give me AB`s and steroids when I cant breathe .
The Dr thinks I may have mild asthma too as I had Covid in Nov 21 and possibly Gerd as the coughing can be bad after eating. She said she will do more tests in her clinic and asked my GP to do certain blood tests in the meantime. She directed me to a Respiratory Physio in the meantime which I paid for privately and she helped a lot. I got an Accapela flutter device from her and dont know how I would have managed without it but even so the coughing is horrendous. Today I think I have pulled/strained muscles in rib/chest and its hurts to cough. At one point today I was down on all fours my head touching the floor trying to cough up phlegm which I could feel/hear ruttling in my lungs despite using the flutter . Thankfully it eventually came out.
Now I have an umbilical hernia due to the coughing which needs surgery. That is the least of my worries though .I dont fear pain/surgery but the feeling sometimes of being so breathless is quite scary. I do have 2 inhalers which give some relief but how does anyone lead anything like a normal life with these conditions.
I dread going out and sometimes have to go back to my car to "cough it up" when out shopping. I feel so low and this week is the first week I have cried most days.
Is this it ?
Warm wishes to you all living with these awful health problems.
XX
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spinonemum
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Active cycle of breathing technique is recommended. I would recommend steaming to loosen to help loosen the mucus. Also you could try using a steam humidifier at night.
I have also used a nebuliser with saline to help loosen up the mucus.
I've found Aerobika is like a flutter but adjustable . Hope this helps.
Yes the physio showed me the active breathing and i do it as well as the flutter but it seems as soon as I think I have cleared my lungs there is always more to bring up and sometimes I am at it all day...so exhausting.
Hi Spinonermum, you are really suffering at the moment but it shouldn't be like this. Pom has given you a good overview of how most of us Bronchs deal with this complicated disease. The first thing is how you feel now, you should contact your GP immediately and take a sample of your sputum with you to be sent to the lab. You need your GP to prescribe 2 weeks supply of antibiotics and steriods, don't be fobbed off, most GPs know nothing about treating Bronch and will try and treat you as if you have COPD, this will mean only giving you 1 weeks supply. Next ask the GP about Bronch specialist in your area, if this draws a blank tell us on the forum where you are living and someone is sure to know of a specialist in you area. I also feel you have done everything you can by paying for help, but please don't carry on paying until you know you are going to the correct specialist. I was lucky my GP knew the local specialist and I was sent as soon as I began with infections/pnuemonia every month. He was totally against me paying and I thank him for that. It took 1 year of tests for me to be diagnosed as every test came back negative. So we began again and the new CT scan showed Bronchiectasis, I was immediately offered Azithromycin which I take 3 times per week. Many Bronch patients and COPD patients are on this medication and I found it a life saver. You will need to be proactive, I know this will be difficult for you as you feel so ill, when you see the GP try and take someone with you who can make sure you get everything you need. If the GP says there is a waiting list for the specialist then you can pay the one off fee to see them, you will then be transferred to the NHS. I know this is a lot to take in so write everything you want to tell the GP down, this will help both of you. Good luck and take care, let us know how you are getting on. Maximonkey
18 years.....thats a long time. Can I ask you something? When you clear your lungs in the morning....does it happen efficiently and then you are ok for a while? I seem to go on endlessly with not much relief.
Only when I'm bad and no matter how much I clear I just can't keep up then that's when I usually start taking oral steroids. If that makes sense.
Oh dear. It really shouldn't be like this. I have had extensive bronchiectasis since I was three and am now 72. I have worked, lived all over the world, had two children, lots of dogs and hobbies. I still have a full life and work two days each week as a guide at a heritage site.You have been given this diagnosis but no proper management. Either medical or self management.
When you have amounts of mucus as you have, which just keeps coming, however much you get rid of it, this is a sure sign that you have an exacerbation which needs treatment with the right antibiotic in a high enough dose for at least 2 weeks. You don't say whether you have been given this. There are different ways of getting bugs down with antibiotics including IV and of keeping them down , nebulised antibiotics and azithromycin taken 3 times each week.
Clearing your chest is something that you should be able to do around your daily activities with you controlling how you do it, not a forced or violent cough.
Bronch is a complex condition. There is lots to help thin the mucus, carbocysteine, nebulising saline in addition to the devices which others have told you about.
Everybody with bronch should be under the care of a genuine bronchiectasis specialist. GPs know nothing about bronch and general respiratory consultants very little more because they are not trained and have little experience in it. Unfortunately, most private respiratory consultants are not bronch experts.
Most bronch specialists are based at big teaching hospitals. They have their own physios and a bronch nurse. They tell your GP which antibiotics and dose to give you and have access to the other forms of treatment. You also need one who is familar with asthma ( most bronch experts are) as this complicates treatment.
Please check whether the consultant you have seen is a bronch specialist. If not, don't hesitate. Go to the websites of teaching hospitals that you can get to , find one, take the name to your GP and insist on a referral.
If she is a bronch specialist, give her secretary a call. They are usually very nice. Tell her that you are in trouble, having an exacerbation and need treatment.
Your active life is not over. You just need to get control of it and of your doctors so that you stay well.
We really do have to be proactive in our own interests and vociferous in getting the right treatment.
I use to be like you but now hardly cough at all. The thing that helped me was a nebuliser which I used in the beginning 4 times a day with saline this really helped get the dreaded mucus up. See what your medics say best wishes Ruth
Hi …agree with Littlepom … You also need to arrange with your GP ASAP for a sputum test to be analyzed to see what bugs are growing… get the correct antibiotics to clear up what sounds like an exacerbation .
Hi, My wife is in our caravan having the first of her 3x per week physio sessions. using the caravan started when we had Covid and he prefeers to keep her away from his cabinet. She has had bronchiectasis for over 50 years and it is only in last 6 years or so that she has needed help. Ab 3x per week, physio 3x per week, and walking our two dogs 3x per day. Try to keep up with the exercise, it makes your lungs work and helps to get the muck moving. I`ll give you an updat in March when she has seen her specialistand finds out if O2 levels are better or worse. have a good day, i`ll just continue with coughing and spluttering from infection kidly passed on by daughter.
Littlepom is right. You should not be like this. I've been very bad before I got a proper diagnosis, but not with it going on and on. Sounds as if you need a good strong antibiotic to knock the bugs out completely. Very good luck in getting relief soon.
I was about 60 when I got ny diagnosis of bronchietasis. I also have asthma for a good 20 years before. I had a lot of trials and errors to get the correct concoctions of medication.I think the life changer for me was azithromycin. I also use a nebuliser which certainly helps a lot.
I am fortunate over the years having had good gp respiratory nurses and various consultants.(all Nhs)
If I was you I would certainly go and see your GP or respiratory nurse.
It sounds like your gp is pretty useless. Littlepom is right in her advice and would make sure you find the name of a bronch specialist(near to you) to your gp for referral. You have been left to fend for yourself as alot of us are, its disgraceful really. So suggest you take a sample to your gp so they can look at what infection you have, this will enable you get on the right antibiotic, ask him for Carbocisteine to thin out your mucus. Look at youtube for how to cough up your muscus. I sometimes take antihistamine to dry up the mucus if its really bad. You shouldnt have to pay for healthcare when your gp can refer you, shocking. Now go kick some butt x
Hi spinonemum, welcome to this lovely forum. I joined fairly recently and people have been so knowledgeable, friendly and helpful. I have bronchiectasis and am very breathless. I used to cough most of the day until they found on a scan that I also had aspergillosis. Once they managed get this under control although I'm still coughing it is a lot less. I am on carbocysteine (a mucus thinning capsule) and take 2 three times a day. I also use an Aerobika device and a salt nasal spray. All these things along with the brilliant tips I have had from other members on this site have helped. But I've also learnt (again from this site) that it's all about self management and a good bronch specialist. Take care 🙋♀️xxx
Hi Janlyn, I struggled with the medication as well. Should have taken it for 12 months but was stopped after 3 months because of the side effects. The 3 months got rid of most of the fungal infection but last time I had a scan there was still some there, although much less of it. Like you I used to really love a long dog walk but now the walking I do is a struggle and mainly for my health rather than the pleasure. Take care and I hope they manage to find some meds that suit you 🤞🙋♀️. xxx
Hi I use a salt pipe that really helps me thin my mucus. I also do postural draining especially before going to bed. I have also found that a hot cup of black tea as soon as I wake up also helps. I was born with bronc 76 years ago and as everyone is writing you definitely need to be very proactive. Read as much as you can about this thing that affects all of us on this site. We know it's extremely difficult to stay focus. Time to go to your GP with a specimen
How many lobes are affected by Bronch? Are you on Carbocistiene which thins the mucus? Are you on any inhalers? Have you any black mould in your home? Have you been trained in huffing technique? Have you acid reflux? This can cause Bronchiectasis.
Thank you to everyone for taking the time to reply.
I have been taking Doxycycline and Preds for flare ups but seem to take them every month now . had sputum tests and nothing showed up. Tried carbocystene and it upset my stomach so take NACSYS effervescent tabs. I have read and learned lots from everybody on this site and I thank you all very much. I think my main problem is not knowing how bad/good I should be feeling on a daily basis?
You’ve found the right advice here to help you on your journey. So good that you made this decision and I do wish you every success in coping better. 🤗x
I have found that watching funny videos and finding other ways to laugh really helps. Also I am using a SmartVest, neti pot, nebulizing saline water, vegan whole foods plant-based diet. I also use a salt pipe to breathe in salt. Read Beating Bronchiectasis and you will feel very hopeful. I am getting a lot better, and I know you can too.
I am in the East Riding and the nearest bronch clinic seems to be Leeds unless of course if you know better. I have gone into cleaning mode to pass the afternoon . What causes the extreme tiredness......I have never experienced anything like it before.
Hi I used to go to Leeds .But have now moved nearer to where I live .They have a good Bronchiectasis clinic at seacroft hospital .You have had good advise so I won’t give you anymore as it can be overwhelming .Good luck.
Well Spinonemum you are having a bad time!The first thing l would say is Little Pom is a great source of good reliable information.
It is hard to accept but initially the Bronch diagnosis is a very lonely experience. You have to put yourself about.Covid has damaged relationships but you may find there a groups of Bronch suffers who meet as part of an exercise programme or simply to share experiences within striking distance. A good source of information could be CHSS who have published guidance on Bronch and through their local offices may have contacts. In Scotland we do have a 12 week course run by physiotherapists that is available as a referral from your GP that may also have been put on hold due to the pandemic.
Basically try thinking outside the box and see if there is a local focus for the condition,there may not be but it’s worth a shot.
Incidentally you need to understand that although bronchiectasis has been known for 200 years the research is maybe 50.You need to get used to the fact that you undoubtably know more about the disease than your GP and probably as much as your Consultant unless you get lucky. It is quite probable there is an antibiotic out there that may suit you better than the one you have.
All the best,sometimes you have to get tough with the medical profession
Being diagnosed is scary, but with proper management this disease shouldn’t make such a difference to your life.
The Consultants tend to give you a diagnosis and let you figure the rest out for yourself.
But there is a lot you can do, firstly as advised, get on to your GP and make sure you are prescribed an emergency pack to keep at home with two weeks worth of steroids and antibiotics. Get a sputum sample off to a lab via a GP as soon as possible. This dictates which antibiotics will be effective if you have an exacerbation. It sounds very much like you have at the moment.
Speak to your GP or Consultant about getting Carbosisteine prescribed. This is a mucus thinning drug which makes mucus thinner and easier to cough up.
Make sure you are referred to a Respiratory Physiotherapist, they’ll teach you active cycles of breathing and chest clearance. I have very stubborn mucus and have found the best thing for me was buying myself a nebuliser and saline ampoules and nebulising every day. This really helps clear the mucus off my chest.
All the best. All this advice may seem overwhelming, but just take it steady. One battle at a time! Happy to help if I can.
Welcome to the forum.its gd that yr doing lung clearance. It's the single most important thing to do.do take yr salbutamol puffer and nacys beforehand,to dilate airways+ benefit frm mucous thinning effect.i feel like I'm drowning during flare ups too.id go see gp and get chest examined.if yr getting such frequent infections,I'd ask dr if u can try higher dose,for longer to get on top of it.id also ringspecialists secretary,tell her yr struggling,see if earlier appointment available.x
Hi spinonemumYou've got some good response here .. Like a few others I've had mine since childhood and I didn't expect to be here at 71 yrs old but I am ..
I sense you may be panicking a bit but please try not to because that will make you breathless.. Once you get the understanding of your GP and get him organised, you should find that if you feel you have a worse infection you can request a sputum test in order that you get the correct antibiotic..
Because Amoxycillin seems to be too weak to deal with our bugs ...
Regards exercise I find that housework helps me clear my chest like vacuuming and mopping, and bending over to pick up my dogs toys makes me cough my heart up ..
Cough syrup can help... I've been having Buttercup Syrup, with a teaspoon of honey and lemon in hot water helps me breathe
Plus I always have in those little imperial mints, Halls Soothers and sometimes Polo mints ... for when I get breathless.
Also I have a genuine Himialayan Salt Lamp I believe which helps dry up the chest
And was recently recommended a Hepa filtered Air Purifier ... which cools the air in the room and allegedly collects up the dust, pollen etc and is good to have in the room for bedtime .. that way your lungs are getting clean air throughout the night ...
So don't worry about being a bit assertive with your GP ... Its the only way to get yourself the attention you need ..
Thank you for a lovely reply.....funnily enough I have been buying buttercup syrup! I definitely feel like I'm panicking.....the thought of feeling like this for the rest of my life scares me no end. Thank you...x
please join lung matters support group as well in the USA. Literally saved my life with info…there is so much more info provided..airway clearance, nebulizing 7 percent saline are huge x2 a day..I use the aerobika attached to the aeroclipse to nebulize saline..
Welcome spinonemum. I have had bronchiectasis since a child and I am now 75. All I can add to the fantastic advice already given is to try and get a good respiratory team around you. Consultant and respiratory nurse and physio, they are invaluable. I personally find the Aerobika the best ‘aid’ to mucus clearance and saline nebulisers are very helpful too. Take care and keep safe.
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