BRUS (Bronchiectasis R US)

[Mariella49]

Does anyone know which Facebook group the people who used to be on BRUS now use? I never used to post much on there, but I do miss having news of other members.

Thanks in advance for any information.

[janedivney]

I’d like to know this too. I stopped posting on BRUS because it became so difficult to use and members dropped away, but some of them were so knowledgeable I’d love to know where they’ve gone!

[helenlw7 in reply to janedivney]

So would I

[Purple4710]

I didnt know there was a group for this and would love to know more as I have thisChristine x

[Collienut]

Hi, I was on Brus too as Fluffysocks. In the month before it closed most people swapped email addresses or friended on Facebook. There wasn't a Brus Facebook group set up, the traffic to the brus site was so low and with her health problems, that Angel decided to close it when the site address came up for renewal.

Admins on Facebook groups seem to have a lot work to do with scammers and trolls, which is probably why one wasn't set up. Some members did say they were in some of the group's on their though. If I can help with any questions, or need a chat, you can contact me on here.

I don't think I have any contact info, but I know there are others on here who also used Brus so hopefully one of them will be able to help if there was someone in particular you wanted to contact. I only have an email address that Laff4evr posted, but I never got a reply when I emailed him, but you may have better luck.

[Collienut in reply to Collienut]

Sorry, I forgot to say. In the last 18 months we lost a lot of the most knowledgeable members, but they had all lived long lives despite having bronchiectasis. Raceyron had to retire from Brus as his eyesight made it impossible for him to read and post anymore. xx

[janedivney in reply to Collienut]

What about the US lady, a retired respiratory nurse who used to play the mouth organ? I can’t remember her name but think she had bronchiectasis as a result of PCD. Do you know if she was ok? And there was a guy who went by the moniker of bertie11, although his real name was Mike.

[Collienut]

I'm sorry to say Shannilars passed away over 12 months ago, it was unexpected and quick. She had so much knowledge and helped so many people.

bertie11 was still active on the day the site closed, I tried to contact him to stay in touch but his inbox was full so have lost contact 😪. xx

[janedivney in reply to Collienut]

Thanks for letting me know. I found the same with bertie11, to pass on other news, but as you say his inbox was full. Aww shannilars was so lovely and incredibly supportive, I’m really sad to hear she’s died, but relieved she didn’t linger x

[Mariella49]

Thanks for the replies. I think that as fluffysocks you were one of the first people to answer some of my queries when I first joined BRUS, Collienut. I used the same name there. When I saw that activity on the site had dwindled over time, I thought people had drifted off elsewhere, as I remembered a private facebook page being mentioned.

It is such a pity that there was no way of saving the wealth of information that had built up on the site over the years.

Ah well, I hope to see news of some members on here. As I said in a post before BRUS closed down, just about everything I do to keep myself well despite the bronchiectasis was learned from the information provided on the BRUS site. That is not say I don't get good information here, too, for which I am very grateful!

[Collienut in reply to Mariella49]

I was hoping more people were going to be on here as well. Hopefully, I answered your question with an ok reply, at the time. Was your avatar a butterfly?

I think Facebook put paid to Brus, which is a shame as it was recognised by ELF and others as having the best sources of information. I'm on one Facebook group, but find the information is often incorrect or downright batty, I stopped commenting as I had people having a go at me. It put me off joining any others.

Fortunately, there are very knowledgeable people on here too, but sometimes questions get lost in amongst all the other posts and people don't always get the replies that would help them the most. I have asthma as well, so my feed sometimes prioritises the asthma over bronchiectasis, but I try to help if I can. xx

[janedivney in reply to Collienut]

Do you know how the founder, Angel, was doing? Such a brave young woman, and along with raceyron and a couple of others she did a fantastic job in starting and running the site for so many years, despite being in & out of hospital. It was a wonderful forum for all things bronchiectasis, and chit chat too x

[Collienut in reply to janedivney]

Hi, I think Angel was diagnosed a while ago with another debilitating condition. She was in and out of hospital in the last year and at one stage Raceyron rallied everyone as he thought we might lose her. She wasn't very active anymore on the site, so I think she was struggling. She also lost her dog, Daisy Mae, who was training to be her assistance dog and the puppy she got also passed away suddenly, so she had a very hard time emotionally as well.Keith passed away some time ago and he helped Angel set up and run Brus. Raceyron was good friends with Angel and I think they spoke/texted almost daily.

[Mariella49 in reply to Collienut]

Yes, you did answer my question and I remember I commented that I loved your username of fluffysocks. I think my query may have been about nebulising in hotels or just types of nebuliser. I was fine for the first seven or so years after my diagnosis, although I realise now I was probably just lucky not to run into serious trouble initially. After diagnosis by a respiratory consultant, I was simply referred back to the GP with no proper instruction about lung clearance etc., just not to wait 3 weeks as per general rules but to contact the GP right away if I got a chest infection. That meant that for the next seven years, I only ever saw a nurse at the surgery and got only five days of antibiotics for any flare-ups. That went on until I got an infection that did not clear with the first, second and third line of antibiotics, followed by a course of steroids, so a sputum sample was finally suggested and it turned out I had pseudomonas. Unfortunately, by the time I got to a specialist bronchiectasis clinic, the pseudomonas was resistant, so I have nebulised colomycin ever since. It was at that time that I joined BRUS and sought advice about nebulisers and how to cope with the daily routine.

Had I found BRUS sooner, perhaps I would have avoided the pseudomonas. It was good to have somewhere that specialised in bronchiectasis as the information can get a bit lost among the other conditions here, although as you say, there are clearly some very knowledgeable people who give valuable, reliable information about our condition. I was so pleased to see Swizzle return! The facebook groups I have managed to find so far have been very mixed, from the scary/fanatical to the downright misguided.

I don't remember ever choosing an avatar, but perhaps it was a butterfly! xxx

[Collienut in reply to Mariella49]

I think I remember the reply! I only had a problem nebulising in hotels when the windows had child locks! I got very good at disconnecting them and putting them back together 😂.

I'm one of the few who have managed to come off of nebulized Colymicin twice. I've done almost five years off it to date, just taking Azithromycin as prophylactic. 😊. Two collies keep me moving, but our home is a mess 😂.

[Mariella49 in reply to Collienut]

Just wondering what the criteria were for taking you off nebulised colomycin. I haven't grown it since March 2021 and I think my consultant was considering taking me off it, but then decided to leave me on it for now. It was my understanding that even if Pseudomonas does not show up in sputum tests, it could still be lurking in our lungs, so the colomycin would be for life. It would be so good to get off it! Like you, I take azithromycin and that has been a game-changer.

[Collienut in reply to Mariella49]

Both times I had to have three negative sputum samples for pseudomonas, think they were over about 18 months.

First time, I stayed off of Colomycin for about 3 years before it returned ( I became colonised with Staphacoccus instead 🙄 - had to take amoxicillain twice a day, everyday to get rid of it).I

Second time, I've been off it for about 5 years, but I nebulise normal saline and take prophylactic Azithromycin. The pseudamonas, I was told, will always be lurking somewhere in my lungs. At one stage Ciprofloxacin stopped working, but after four years of no chest infections it did work again on the last one and I stayed out of hospital 😊.

I've only had one chest infection in that time, whereas it used to be every few months and loads of lung clearance every day. I'm now a 'dry bronch' and struggle to do a sputum sample (used to fill the sample pot easily), but still do lung clearance as a precaution daily.

I have asthma as well and the Colomycin did cause breathlessness for me after nebulising. Fingers crossed that you may get a break from it. xx

[Mariella49]

It would be lovely if any other ex-Brussians could add to this thread so that we know which of us are on here.