Dawn

[Deehbee]

Recently diagnosed with Bronchiectasis

[Hidden]

I also have that.

Welcome to the forum x x

[Deehbee in reply to Hidden]

Thank you Mandy, how do you cope with your symptoms and do you manage to work at the same time?

[Hidden in reply to Deehbee]

I just get through the day the best i can and each day can be very different...i also have very severe copd and had to stop work.

I saw the your an icu nurse which i dont envy because you know more about it than most people.

Are you still working x

[Deehbee in reply to Hidden]

Im currently off sick and have been since March I am desperate to return but at the moment thats just not an option due to my symptoms. I am just at a loss how to sort myself out and get back to work.

[Hidden in reply to Deehbee]

I wish i knew the answer but your probably more informed than i am....What medication has your consultant got you on perhaps that could be looked at x

[Hidden]

What a lovely photo! Hello and welcome - I care for my husband who has severe Copd. This forum is so supportive if you have any questions you will get good advise. Lots of love TAD xx

[Jjude]

Welcome to the forum Dee. Haven't been here long myself (copd) but the members are very friendly and knowledgable.

xx

[Deehbee]

Thank you TADAW. Although I am an ICU nurse we don't know everything and when you are diagnosed with a long term condition its very scary. I am struggling with severe shortness of breath and fatigue. I find even the simplest of tasks, i.e hoovering absolutely wipes me out and I have to have a nap afterwards. I find for my age and someone who used to work 14hr shift and could clean my house from top to bottom without stopping ridiculous that I can no longer do this. I am just hoping that I will soon get back to how I used to be and be able to return to work and carry on as normal .

[Hidden]

Whats colonised pseudomonas ive heard of that before on here.

[Hidden]

Oh that sounds like me....i was nebulising colomycn for a year and all it did was seem to reduce it a bit but i seem to be ok x

[Deehbee]

Hi thank you for your reply. They think mine been caused by damage caused from previous episodes of pneumonia and pleurisy. I've now been referred for pulmonary rehab and I'm hoping if they can help manage my symptoms then I can get back to work. Treatment at the moment is with inhalers and omeprazole.

[Deehbee]

Thank you for that link it's very useful.

[cofdrop-UK]

Hi Deehbee

A very warm welcome to you, though I am sorry you have been dx with bronchiectasis. I too have had bronch since the age of 5 months in 1948 from whooping cough and double pneumonia (tough little b considering the time) - measles aged 19 (double whammy) more recently asthma. My most common pet is haemophylus but others pop up strep and morax, just to keep me on my toes. As I am colonised with HI I neb Tobramycin.

Good advice from flib and I agree the chss doc is the best around. Would also emphasise 2 other points flib mentioned - having a respiratory consultant who has a special interest in cf. There are a number of adult cf units around the UK - the importance of mucus clearance from your lungs. I would be surprised if your con did not refer you to a respiratory physio so you can learn the best technique to suit you. You might want to ask for a referral. You don't say how long you have been using the inhalers or what they are but if they are not helping, maybe you need to be reviewed. If you are getting a lot of infections you might want to ask about prophylactic abs - many bronchs are on Azithromycin 1 Mon, Wed and Fri.

When it comes to PR I can only speak from my own experience. I found the excercise part very helpful indeed. I found some of the talks simplistic, some common sense and a few were interesting. The course is designed for copd so some of the advice didn't really apply to bronchs i.e. abs should be given as a 7 day course. As you will know abs for bronch should be given for 14 days. Just stuff like that. Your energy levels should increase though, so well worth going.

I hope once you get the right medication and physio regime your symtoms will improve.

love cx

[Deehbee in reply to cofdrop-UK]

Thank you very much for your advice. I've been using inhalers since may just following my diagnosis. I don't feel they help. My resp consultant unfortunately gave me diagnosis over the phone (not very professional ) and has not referred me for PR or anything. He also stated I have an element of fibrosis in my right middle lobe with a small lung module in my right lower lobe. I feel I've been miss managed but I am now getting on top of that. I just want to manage the symptoms so I can return too work.

[cofdrop-UK]

I can understand you wanting to manage the symptoms and get back to work but your main aim really is to get more in control of the bronch than it has of you. Good self management is a must and bronchs have to be their own advocates. Telling you by 'phone, I agree, not good at all. Have you checked out what his/her special interest is? Believe me having a good proactive resp con who has a special interest in cf/bronch makes such a difference.

So you've been on the inhalers for 2 months with no improvement - maybe it's time for a review of meds.

Good luck. Please keep in touch and let us know how you get on.

cx

[Deehbee in reply to cofdrop-UK]

Thank you so much. I'm seeing my GP tomorrow so hopefully a medication review is what's needed.

[cofdrop-UK]

Just wondering as you are working in ICU if nursing patients with severe respiratory infection may be problematic to you. On the other hand at the age of 15 the senior nurse who was always on my ward when I was a child asked me if I wanteds to train as a nurse. She told me on of the doctors had bronchiectasis. I knew actually as I overheard the sister when the doc coughed that she sounded like one of our bronciectatics and she replied because I am a bronchiectatic. No way, I didn't want to spend any more time in hospital than I had to.

You might want to have a chat with one of the respiratory nurses at BLF - click red balloon for number. They may be quite helpful, being experts in respiratory and in the same trade as yourself as it were. Bit of an uncomfortable thought I would imagine to contemplate a less risky department.

cx

[Deehbee]

Hi guys thank you so much for all your advice yesterday. I have seen my GP today and she has referred me to see a respiratory consultant who specialises in CF at Wythenshawe. I also have received my first PR appointment for next week so hopefully will be great soon.

[cofdrop-UK in reply to Deehbee]

Good news - I have heard excellent comments and experiences of folks who attend Wythenshawe. Good luck with the pr.

cx

[Nanaeal]

Hi & welcome to the community. I was a Hospice @ home nurse when I was diagnosed (AF then heart failure then COPD). Never did make it back to work but with a lot of support from the brave & supportive members of the community. I am doing well. Currently touring in Europe. You may feel you don't know much but you do know how to get information & ask the doctors the questions needed so you can be actively involved in your treatment plan so once your through the worst of the shock you will do fine. Best wishes Nan

[Deehbee in reply to Nanaeal]

Thank you Nan I hope you're well and enjoying your holiday.

[Nanaeal in reply to Deehbee]

We're having a great time Thank you.