A bronc member fights back!

[Locheil91]

Hi Folks,

Pre Covid l was a regular contributor, then comes lock down and in Scotland a bit more lockdown. Anyway l am here now am a few exacerbations further on and a recent dose of lung cancer to keep my bronchiectasis company in the other lung.Hopefully in remission on the latter but the bronchiectasis has been sulking due to all the attention the other lung was getting andis now making its prescence felt..

Suddenly l wake up to anew world.The comfort and support of the bronc clinic is no more,,gone are the opportumities to check your progress by regular visits to the Xray and associated equipment checking on lung capacity and so forth.Our Ductors and medical staff generally are doing a fantastic job under the most trying circumstances and the precious clinics that were central to our lives appear to have disappeared albeit temporarily.

Is this a local issue or are other members thrown on their own resources to stay well. In other words- how are you coping folks?

I will throw my hat in the ring and offer a reference on a guide to bronchiectasis management available on the British Thorasic Society web site. written with others by one of the foremost authorities on the subject in the UK supported by a strong team of adjacent experts.

[Alberta56]

Welcome back, Locheil. Long may the cancer stay in remission and the bronc start to behave itself again. Hopefully the better weather will help you to get your strength back. I'm afraid a lot of us (most of us?) have to look after our own health needs, do our best to stay healthy without medical assistance and shout very loudly when we really do need help. Thank you for guiding us to the British Thoracic Society web site. It sounds very useful.

[Locheil91 in reply to Alberta56]

Well thank you for your good wishes Alberta56I rather thought patients might be using a diy kit.That is an absolute disgrace.l can tell you that only a small number of medical students at the end of their training can diagnose the disease and yet the Profession have known of its existence for at least 2 centuries..Thank goodness for the BTS and their web site!

[Alberta56 in reply to Locheil91]

I feel we are a lot of Cinderellas with not a fairy godmother in sight.

[Izb1]

Welcome back Locheil91 . Sounds like you have had a bit of a rough time and hope you continue to get better. Like most of us now we are all left to get on with it ourselves so thank you for the info on British Thorasic Society I will have a look at their web site. I wish you well and hope you continue to make progress x

[Locheil91 in reply to Izb1]

Many thanks lzb1. I am beginning to wonder if we can’t raise the temperature a little through the web site without breaking the rules.There are too many folk having their lives limited and it would not cost a shed load of money to make a good self management plan freely available as BTS has done..Good luck to you and all of us!

[watergazer]

Welcome back. Gosh you’ve had a rough time. Hopefully you’re feeling stronger and the warmer weather will help x

[Locheil91 in reply to watergazer]

Thank you Watergazer

[Pachira]

Hi Lochell. I’m Scottish living in the States. I joined Health unlocked when I became metatastic for breast cancer back in 2017. My Ct scans showed tree in bud in my lungs and nodules so I think my Onc thought it was cancer. Currently it’s in my bones and I’m on Verzenio. I was coughing so much that they finally sent me to a pulmonologist who did a bronchoscopy and found I had Bronchiectasis, and NTM/Mac as well as asthma. He started me on a corticosteroid and issued a nebulizer machine with abuterol/ ventolin. I then joined Lung matters on Face book who won’t permit discussion of steroids as they say that nebbibg with abuterol and 7%saline plus airway clearance is the only way to go. I don’t seem to read that a lot of people in the Uk do this but maybe I’ve just not read the right posts. I’ve cut the corticosteroid down to before bed and neb once a day. The infectious disease specialist they sent me to wants to start me on the big 3 but dealing with the cancer might be enough. I’m 74. Interested to know if you’re nebulizing. Chris

[leo60]

Lovely to have you back after such a rough ride. Hope the remission stays with you, all the very best xx