Hi I'm new!!

Hi all

Just found this site and thought I'd ask a few questions if you don't mind? I know you not doctors but I have so many questions lol

So I'm 35 has asthma since I was two and have always struggled all my life with chest problem i.e. Pneumonia, pluerasy blood clot in lungs etc

For the last 3 years my asthma has been horrendous and they now say I am a brittle asthmatic, I was also told I have bronchiatasis on both lungs 18 months ago.

So I take 25mg day prednisone (steroid dependant) co amoxiclav long term, spiriva inhaler, ventolin inhaler and nebs, singulair, aminophillyne, symbicort, flixotide nebs, quvar inhaler and tiotropium nebs yet I am still always ill, I have been in hospital every months since June last year and have been in itu ventilated 4 times in 3 years. I am always ill always out of breath yet I take so much that don't seem to work and don't seem to get any better? I am under a specialist in Cambridge and all that seems to happen is they change my meds about make me do lots of tests and tell me how bad my lungs are (like I don't already know!!) and that's about as far as I get!!

Obviously being ill has messed my life up completely I have lost my job and am almost house bound and don't see there is any light at the end of the tunnel.

Does anyone else suffer like this? I have two you kids (single parent) and it's hard being so ill and looking after them and also scary at the same time as when I am ill I can't even talk so struggle to call for help.

Will the bronchiatasis go? Or will it just keep getting worse?

Any help or advice would be much appreciated

Tia

X

18 Replies

oldestnewest
  • Bless you have been through the mill

    Do you mean bronchiectasis

  • Hi yes sorry that is what I mean x

  • Hello Tia and welcome to you. I care for my hubby who has Sarcoidosis and COPD and find this forum very helpful so l hope you will too. There are people with bronchiatasis on here who will advise you on that.

    I do hope you can get all the right help and medication and wish you all the best. Xxxx

  • Oh my goodness you are so young to have all this going on as well, especially with young children. I know very little about bronch but there are members on here with it and who are very knowledgeable. I am sure some of them will come in very soon.

    I was wondering whether you have been assessed for oxygen at all? Or have you and been told it's not needed?

    Oh and welcome to the site. We are a very friendly, supportive group so stay with us and we will help and support you all we can. Hugs x

  • Hi I haven't been assessed for oxygen I usually go in (was rushed in by air abmulance last Monday) get treated and then get out as quick as I can and don't really hang about for questions or answers as I have kids x

  • A warm welcome to you Blowy. You're certainly having it bad, I'm so sorry.

    What age are your children? They must find it hard with a Dad who's not well.

    I'm presuming you have help from family or friends.

    I don't have asthma but can understand the problems you're having with a lung condition.

    You're also prescribed a large number of meds. Could you go to your GP & explain your situation & see if something else can be tried to help you?

    I do hope you get help soon 🌸

  • Hi jessy

    My kids are 13 and 9 and I'm mum lol and yes it's really hard as I don't live near family and rely on friends to have my kids when I'm ill.

    My meds obviously help me but some things the side effects out weigh the benefits (steroids!!) and I take so many different meds yet I am still always ill and always struggling to breath x

  • Oh I'm sorry Blowy, I apologise for calling you Dad. My reason is, it says M under gender in your profile!

    I'm sorry you don't have a lot of help with your children.

    I hope someone can help you, be it a doctor, nurse or pharmacist 🌺

  • Hello Tia

    And a very warm welcome to a very supportive and friendly site.

    I personally can't help you regarding your particular problem, but l am sure lots of the members can.

    Just ask, like you have, and they will be there for you.

    xx

  • Hi Tia, welcome! My heart goes out to you - so much to cope with and with children too. Im assuming you don't take all these medications at the same time but have been moved on and off different ones - is that right? If you can get yourself to a pharmacy, they all do MURs - Medicines Use Reviews. They are good at giving help and advice to people who are on a lot of medications.

    I also have bronchiectasis, diagnosed in my 60's. Some people have it from childhood. Ive not heard of it going away but I don't know that much about how it progresses (my main problems being copd and asthma). As Cough has told you, there are several old hands on the forum who will know more about that. What I do know is that physiotherapy is very important - in other words it's very important to bring up as much mucus as possible each day. There are devices like the flutter device which help with this - you can google it, and some GPs prescribe it. You just blow into it and it helps mucus come higher up your airways so its easier to cough up. There is also the active cycle of breathing and you can find out about this on youtube - it also helps get rid of mucus. You need to do this as most people with bronchiectasis produce more mucus than normal which can gets stuck and then gets infected and causes very frequent exacerbations.

    As I write this I wonder if you're getting enough help with the bronchiectasis. Many GPs know little about it. Presumably you've had a CT scan to diagnose it? I ask as this is the only sure way to get a bronch diagnosis.

    I don't know what else to say here, but I'd suggest that if you want to you can call up the BLF helpline (03000 030 555 office hours) and talk through your situation with their very friendly and knowledgeable nurses. I hope you can find something which helps. Take care :)

  • Hi thanks for you reply yes I was diagnosed after I had a ct scan as I was coughing up blood a while ago, all that's happened since then is I was out on long term antibiotics to prevent infection yet I am always ill still, and yes I take all those meds daily yet I can't even walk up the stairs with out struggling.

    Things have got a lot worse the last two years and I'm just worried if I have deteriorated this quick in two years what am I going to be like in another 2 years?

    X

  • Of course you're worried. Please do call up the BLF helpline and talk to them. Good luck :)

  • Hello Tia, and a very warm welcome. I think that you've been given some great advice and I can't add anything constructive, but would just like to say that we are here for you. XXX

  • Have you ever had your immune system checked out. I have finally been refered to an immunologist due to repeated infections and medication changed a lot. Over many years Maybe enquirer about this. It could be down to your immunity just a thought. Take care

  • Hi Blowy and a very warm welcome to you, although I am very sorry to hear the reasons. You have had and are still having a very rough time indeed.

    I have had bronchiectasis from babyhood and asthma more recently and, like you was a single parent to my daughter, who is now grown up and I am now a grandma.

    I am assuming you had a consultant who had a special interest in asthma, since you have had it since you were a young child.

    With regard to your bronchiectasis you would be well served by seeing a respiratory consultant with a special interest in cf/bronchiectasis. S/he would also be extremely knowledgable about asthma. I can gibe you the name of a good consultant by pm. If you haven't already your consultant should refer you to a respiratory physiotherapist, arrange a cf test and refer you to an immunologist if they consider it to be necessary. Looks like your medication may need reviewing.

    Many people with bronchiectasis take a prophelactic Azithromycin 1 three times a week and many are on nebulised antibiotics. I don't know of anyone who takes co-amox on a daily basis except as a treatment, although I do know of folks who take Doxycyline on a daily basis. What dosage do you take of co-amox?

    Not sure if you have seen this, you may find it helpful. It is a few years old now and I understand is bout to be updated, but it is the best info in my opionion.

    Just a note you might want to lock you post.

    chss.org.uk/documents/2013/...

    Hope things improve for you Blowy. Please let us know how you get on.

    love cx

  • Hi Blowy,

    So sorry to hear how difficult things are for you and that you have so many health problems. It must be very frustrating and depressing for you, being I'll so often.

    With Bronchiectasis, your main symptom would be coughing up discoloured sputum and getting chest infections. Unfortunately, infections would put your lungs and your breathing under pressure, so it's a bit of a vicious circle.

    Ringing the BLF helpline would make a lot of sense. You would have the chance to discuss your symptoms and your medications with people who are qualified and know what they're talking about.

    I hope you're getting any assistance you're entitled to, from the state and that you get some help and support with your medical problems.

  • Hello and welcome Tia

  • You are incredibly young and although your seeing a specialist im wondering if its the right one for you because he/she should have explained about Bronchiectasis ...It will not go away we have wide airways in our lungs so all the tiny hairs are unable to move the mucus should so it becomes infected

    Its really important that you see a physiotherapist who can show you techniques to get this mucus up yourself

    Has anyone mentioned a pulmonary rehabilitation course to you,,, either your doctor or specialist can refer you ...Its a 6 week course where you go 2 or 3 times a week depending on how its run...They go through everything about different lung conditions and teach you how to take care of yourself ,,, many people on here have been on the course and its most definitely worth you going on one

    You seem to be on a massive amount of medication

    I was diagnosed with bronchiectasis at 48 and i have been stable since i was put on medication

    Do not be afraid to question your doctor and specialist and ask them why your still struggling so much,,,,

    Also if your struggling at home you should have a home assessment to see if they can help with things like a stair lift etc and help around the house

You may also like...