Hi All
Recently been diagnosed with brochiectatis after a ct scan been referred to lung consultant who has now referred me to one of his colleagues who specialises in bronchiectasis apparently he is not seeing any new patients till September.
How long was it till you saw a specialist after first being diagnosed its doing my nut having to wait so long.
Thanks
Lina
Hello Lina. You could always try phoning the consultant’s secretary to see if she can fit you in. In the scheme of things though, September isn’t that far away and having a bronchiectasis specialist as opposed to a general respiratory consultant is soooo important. Maybe phone anyway to make sure that you are one of the first the specialist sees. There are quite a few of us on here withlong standing bronch and we will all be happy to support you and help you with its daily management.
Hi, it's a slow process I have found. I was diagnosed in April with Bronchiectasis and after numerous phone calls to the hospital to find out what is the next step i have still heard nothing. I was told I will need respiratory physio which probably won't happen until August, I was also told I would get antibiotics for any future infections but again nothing. I get the feeling that unless you're almost dying there seems to be no urgency whatsoever.
You need to make contact with whoever is the consultant who diagnosed you or in whose clinic you were. They should explain to you about the antibiotics and also write to you and to your GP. They should advise the GP how to treat you. Unfortunately most GPs knowvirtually nothing about bronchiectasis because the training concentrates on emphysema an chronic bronchitis. The GP should give you two weeks supply of the antibiotic to keep at home to start quickly if an exacerbation begins. The physio should give you breathing tecniques to get the mucus out. In the meantime there is a lot that you can do for yourself. Bronchiectasis is 85% self helpand the rest medics and drugs if things get out of hand. Look on You tube for the breathing cycle and spend at least twenty minutes twice each day getting the mucus out of your lungs so that any bugs in there don’t have chance to have a party.
I am sure that it will all soon be a routine part of your life and you will be able to carry on enjoying your activities.
Hi littlepom
I was referred by my gastro doc who ordered ct scan after having a camera looking in my stomach gp referred me to gastro as I was losing lots of weight and still I explain my anxiety with the weight loss to my gastro and he ordered the ct scan thats when they found part of my right lung inflammed and referred me to a lung specialist I have not seen any of the team involved physio nurses only gp so I am at a loss to what I can do I won't go out as I feel everyone is looking at me.with the weight loss but will look at the you tube video you suggested.
Thanks
Lina
You should see the state of me and I’ve just lost another 7 pounds having that chest virus. I have seen gastro people- nothing. My bronch specialist says that it is all part of the condition and usually a sign that there is an exacerbation lingering. I am currently trying to put off IV to wipe up what the latest lot of cipro didn’t get. Go to your GP and see if they can hurry things up. I’m afraid that we have to be very proactive in our own interests and quite vociferous in getting what we need.
Don’t worry about people looking at you. It is very important that you get out and exercise to keep your lungs moving.
Thanks littlepom I'm just carrying on my netball club where I help coach want me to get bsck in helping but the girls who I help coach are 14 and they would be shocked at my weight loss I'm carrying on with my housewify duties as no one else would do them look after yourself and I will try and chase things up xx
Lina
If you feel up to it Lina do carry on with your netball club. That exercise is so good for you. Girls of 14 are not babies. They will probably accept and empathise with your weight loss better than you could imagine. My children and then my grandchildren just know that I have this. Sometimes I am skinny Nanny and sometimes I am very skinny Nanny. They also know that when I am at their house I go to the loo to empty my lungs. They couldn’t care less. Please do not consider yourself an invalid. If I had grown up with that attitude I would have not had the life that I have. And don’t go sculking around as if you are a pariah. You have a condition which is challenging to live with but manageable with the right routines and medication. Nobody, nobody has the right to judge you, however you look. The girls would rather have you there helping them and giving them a great time with their sport, however skinny you are, than be left wondering where you are and if you are alright. Go for it! xx
Thanks littlepom even gp said to get back to do walking netball and the girls do miss me always asking about me I'm going to try in September and rest for the summer
Lina❤❤❤
Hi IanW1962
That is awful having to wait so long as you say think we need to be dying to get in any clinic now I even looked at going private but there is no specialist that deals with respiratory medicine local to me specialists don't even have a clinic at my local hospital don't even think my gp could chase this up. Hope everything comes quickly for you
Lina
Lina-61 - the advice about telephoning the secretary is a good one. That is what I did for my OH. She told me to ask the GP to write for the first appointment with a consultant who specializes in bronchiectasis (our hospital has more than one). The doctor did this and two weeks to the day we were in the OPD waiting to see the consultant. The hospital booking clerk telephoned to ask if we would like to take an early appointment that had arisen due to a cancellation.
Thanks Bella 395 will ask gp but I don't see him for a couple of weeks but due to have bloods done again next week
Lina
Does your GP have telephone appointments? This is how I got the referral. I knew he was going to telephone on a particular day and time frame so I didn't miss the call. All sorted in five minutes. If the referral has already gone in then still telephone the secretary because she may be able to escalate your appointment, particularly if they have a cancellation.
Try phoning the consultant's secretary for any cancellations
Dan.
Sound about right I had to wait 3 months after my ct scan. Be careful not to catch any colds n flu bugs.
Thanks Chriskho
Nose is already bunged up and runny had a chest infection hubby has a cold probably will get it
Lina
Brompton Hospital referral times
lost lung function test referral
when diagnosed is it common practise not to be referred to a specialist consultant anymore 
Oxygen referral
Found a specialist 
