Looking for fellow Bronchiectasis sufferers to chat to.
Hi Everyone, I'm new!: Looking for... - Lung Conditions C...
Hi Everyone, I'm new!
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Good morning Patty, and a very warm welcome to the group. I don't have bronchiectasis, I have emphysema, but I'm sure some of the other members will be along soon to say hello. XXX
Hello and welcome. We have quite a few members with bronchiecstasis and hopefully they will see you post soon.
Welcome to the site I am sure you will get plenty support
Hi Patty I also have Bronchiectasis has been nine years now, can be hard work at times but I won't let it beat me.😀
Hi I have bronchiectasis very recently diagnosed. I'm only 41 so looking for lots of ways at the moment to stay as healthy as I can as I have two youngish children. I've just taken up swimming and I'm trying to eat a healthy diet and learning how to do the active breathing cycle to clear my chest. How long have you known you have bronchiectasis and how are you managing it? Xx
Hi, Im 60, recently retired & was diagnosed 6 weeks ago . I'm currently waiting for my 2nd visit to the respiratory clinic so don't have any plans for managing my condition yet. I have a lot of questions to ask them though!
Like you, I have decided to take more care of myself. I have always tried to keep fit & eat healthily and I also enjoy swimming but haven't been since my diagnosis. Has it been recommended to help manage your Bronchiectasis?
It must be hard work to you to manage your condition and look after children. I have grandchildren that I meet after school and have during the holidays and have found it really tiring recently.
It's good to chat to you. Thanks for replying.x
Hi
I too am waiting for a 2nd consultant appt but through this forum I have spoken to others who advised swimming is good I've been twice so far and I do find it helps to shift the mucus although it is hard work. I was given mucodyne by the consultant and advised I would be referred to a physio but again through here I have been given advice on the active breathing cycle and I am starting to do that 3 times a day which again seems to help clear the mucus and means I cough slightly less. It is hard with the kids and I also currently work in a primary school as a Teaching assistant which has not been the ideal environment for me as I have had infections galore! My bronchiectasis has been caused by damage from radiotherapy as when I was 27 I had non Hodgkin's lymphoma (a type of cancer) in my chest area.
I think you will find this forum really helpful, people are kind and supportive and there is always somebody who's been through what you have!
😊
Me. Very ill now.
Hi Patty, and welcome to the site. I too am relatively new and have already found the site a real comfort. I haven't got a diagnosis yet but they tell me they think it is bronchiestasis. I'm still not sure what that is going to mean. Have been coughing for about six years daily and from December 2015 have had five exacerbations lasting about 3 weeks each. This last one (April 2017) just can't seem to get myself back to 'normal' and they have put me on carbocistiene. Have another bronchial challenge (spirometery ) on Tuesday and hoping consultant will be able to give me some answers on 12th May. Look forward to chatting to you about things 🐝Xx
I was also diagnosed at the age of sixty but had been misdiagnosed before that with both asthma and even tuberculosis. As I have an extra infection I was on antibiotics for three years but they didn't work so now it's fingers crossed. I do have emergency ones which do seem to work in the short term if I am coughing up a lot of mucus.
I still travel a lot, including Cuba recently and don't seem to get out of breath very much as long as I cough everything up in the mornings especially and also late afternoon usually. It does make me very tired occasionally. I see a specialist once very six months and my GP is understanding as his mother also has bronchiectasls.
All the best.
Hi Patty, I was recently diagnosed with bronchiectasis but apart from help on here I don't feel I was given much information by the medical profession. The chest clinic gave me one chest clearance exercise to do before getting up in a morning, and that's been it!
I take carbocisteine and asked for a nasal spray after advice on here. It seems a runny/blocked nose is another symptom!
I've found myself lacking energy and a cold knocks me out for at least three weeks, so best to be avoided!
Otherwise, keep doing whatever you used to do, but be aware of looking after yourself more.
Hi Patty. I have bronchiectasis, asthma and other things, have had it as long as I can remember. Gave birth to three healthy children whilst suffering with it. Went to work, looked after children and did everything else mum's do albeit a bit slower sometimes. I'm 69 now and disease has worsened and I'm pretty slow nowadays as very short of breath but I still look after myself and my garden. Just carry on, do what you feel you can do, eat well and don't worry too much about Sats etc, you're as good as you feel. Good luck. x
Hi patty
A very warm welcome to you, although sorry it's because you have bronchiectasis.
I was diagnosed when I was 5 months old, so can't remember a time with great lungs. This has not stoppped me doing lots of normal stuff, although now with other medical issues it's more difficult.
Glad you have a respiratory consultant but I do hope s/he has a special interest in cf/bronchiectasis. Check them out online. Con should refer you to a respiratory physio who will teach you lung clearance techniques and PEP gadgets (flutter, acapella), which all aid mucus clearance and you can both work out what works best for you. Lung clearance is the most important thing you will do to help yourself and you will need to do it every day, no matter how tired.
I will put a couple of links up for you which you might find helpful. Some may be a bit heavy at first but you might want to dip into them as things crop up you need an answer to. They are both in the process of being updated and I would check out page i5 in the guidelines about antibiotics.
chss.org.uk/documents/2013/...
brit-thoracic.org.uk/docume...
Don't hesitate to ask anything which concerns you - there will usually be someone around who can help.
Best wishes
cx
Thank you so much for the info. What is the best site to check out the consultant?
Hi Patty and welcome. Like you, I was diagnosed with bronchiectasis after coughing up blood. Non smoker. Previously had had a difficult year with one infection after another, lost a stone in weight. I had pleurisy as a baby, but not really sure why I have this condition.
Hi, I have never smoked & I was told I probably had either pneumonia or whooping as a child which caused the Bronchiectasis. I don't remember having either. I have had 2 episodes of coughing up blood in the last 2 months which is quite scary - especially for people who are with me! I am trying to carry on with my life as normal but it is always in the back of my mind it could happen suddenly again.
It is about seven years since I was diagnosed, I am 83 now. IN a way coughing up the blood helped me to get the diagnosis, I was sent for a bronchoscopy and ct scan, after many continuous infections. Gettng a diagnosis meant that I started the daily breathing exercises to remove sputum, and that helped to prevent infections. I cough up blood now and again, it always alarms me, dont think I will ever get used to it. My gp lets me keep an emergency pack of antibiotics in reserve so I can start them when I feel it is necessary. JUdging whether it is an infection or not is difficult sometimes.
Good morning Patty. I was diagnosed with bronchiecstasis in 2012. I love chatting!
Welcome Patty. I have Emphysema but wanted to welcome you.to the group
Be assured there are many with bronchiectasis here that will ne welcoming you too.
Ralph
Hi Patty, it's a shock to receive a diagnosis like bronchiectasis so it will take time for you to get used to. I was diagnosed just over a year ago (I'm 63) and am still coming to terms with it so give yourself time. Be kind to yourself xx