Author Topic: Diagnosed with Bronchiectasis  (Read 7502 times)

hellymedic

  • Just do it!
Re: Diagnosed with Bronchiectasis
« Reply #25 on: September 01, 2014, 02:49:41 pm »
My Aged Brane vaguely recalls dry cough being a 'feature' of some ACE inhibitors. BICBW.

Re: Diagnosed with Bronchiectasis
« Reply #26 on: September 01, 2014, 02:55:46 pm »
My Aged Brane vaguely recalls dry cough being a 'feature' of some ACE inhibitors. BICBW.

Yup - I was warned about that. So far so good  :thumbsup:.

Re: Diagnosed with Bronchiectasis
« Reply #27 on: September 05, 2014, 04:10:56 pm »
I got to see inside my lungs today. CT scans are cool!

The emphysema I have is quite marked, but my lung function tests are pretty good - "As good as we might expect, considering the damage" said the doc. There doesn't seem to be much air trapped when I exhale, so for now at least, the emphysema is not affecting me - beyond me getting out of puff a wee bit sooner than I should.

Looks like I will always have a predisposition toward cardiac/pulmonary crisis during long maximal efforts - and I've been warned off that. So no more 2x20 intervals, or riding over the North York Moors on a 73" fixed gear bike. Basically - I can do HI stuff, but only for very short intervals.

Other than that - "Don't take up smoking again, Chris" seemed like sound advice. It's progressive - it won't get better, but I only have a mild form of A1ATD, so as long as I keep fit, I should also stay healthy.

As for exercise, "Dont' go mad." is what I was told, followed by - "and many would say, me included, that 10,000 miles of cycling in a year, is going mad". I thought that was quite funny  :D.

clarion

  • Tyke
Re: Diagnosed with Bronchiectasis
« Reply #28 on: September 05, 2014, 04:30:20 pm »
There are some pretty positive messages there, despite the limitations.  It's worth knowing what you can and can't do.
Getting there...

Re: Diagnosed with Bronchiectasis
« Reply #29 on: September 06, 2014, 05:03:57 pm »
There are some pretty positive messages there, despite the limitations.  It's worth knowing what you can and can't do.

Definitely! One of the reasons the bottom fell out of my (our) audax year was because I was too nervous to get back on a bike again for a while - even after the medics suggested I could; I just didn't know what I should/shouldn't be doing. Having some diagnoses and explanations of events makes a big difference!

ETA: Sorry Dr Mekon, I seem to have sidetracked your thread!

Re: Diagnosed with Bronchiectasis
« Reply #30 on: September 09, 2014, 06:27:38 am »
It's all good - I'm sure we'll learn from each other.

Amazing the difference a bit of understanding makes.

Still struggling with mucolytics. Tongue was awful yesterday, just from speaking too much.

Re: Diagnosed with Bronchiectasis
« Reply #31 on: December 08, 2014, 02:40:22 pm »
@Chris S - did you get a PowerBreathe? As closetleftie will attest, I've become a bit evangelical about them. I absolutely love it now I've got in to the habit of using in religiously.

The prof at Brunel who designed it has a great site on how to use it properly (short version 30 satisfying breathes, then turn it up half a turn until you can't breathe any more, and do that twice a day).

If only the medics I work with would stop saying that the evidence for IMT is mixed, and accept that I need a load PowerBreathe K5s so we can measure adherence.

Re: Diagnosed with Bronchiectasis
« Reply #32 on: December 08, 2014, 03:32:53 pm »
I didn't, no - but fboab is quite keen for me to get one - she's the one who has to suffer my gasping and panting most when on the bike  ;).

I'll look into getting one.

ETA: Which one do you have? The K5 is very spendy...  :o

Re: Diagnosed with Bronchiectasis
« Reply #33 on: December 15, 2014, 03:02:30 pm »
Boggo Powerbreathe Plus.

I would love a K5.

Re: Diagnosed with Bronchiectasis
« Reply #34 on: February 04, 2015, 08:02:36 pm »
I'm now the proud owner of a PowerBreathe Plus (Level 2).

Just about managed a full set of 30 this evening, without passing out - but I did feel a bit light-headed. I hadn't appreciated it did it's thing on the inhale. The instructions that come with it make no mention of cranking up the resistance until you can't get air in, as you described DrMekon - I'll have to check the website you referred to.

Adherence seems to be key in the user-experiences I've read so far.

Re: Diagnosed with Bronchiectasis
« Reply #35 on: February 05, 2015, 06:35:05 am »
Excellent. Yes, just get to 30 with proper breaths, then give the dial half a twist a breath until you can't get a breath at all. Supposedly this is important.

Because it's such a odd thing (a breathing sufferfest twice a day), I've heard people describe is as unviable. I would love to get a PhD student to explore this.

Currently fighting off a cold / sore throat. Still no chest infections since I started on the new treatment regimen.

Re: Diagnosed with Bronchiectasis
« Reply #36 on: February 05, 2015, 12:43:47 pm »
I mentioned to fboab last night, I can imagine if you're claustrophobic, you'd hate it. Wearing a nose clip and breathing through a mouthpiece is bad enough if you hate that "smothered" feeling - but add in the fact that you have to really work for each inhale, and you can sense that panicky feeling lurking underneath, so yes - I'm sure some people find adherence a problem!

I've nicknamed it my Asthma Simulator.

It reminds me of an online mentor (now sadly dead) who helped me stop smoking. He had severe emphysema, and explained how I could simulate how it felt to have it, really easily. Put a nose clip on, and go for a walk - but you're only allowed to breath out through a straw. It's kinda the reverse of the PowerBreathe, but equally horrible (I tried it).

Re: Diagnosed with Bronchiectasis
« Reply #37 on: May 01, 2015, 12:12:58 pm »
New consultant, new drugs. More omeprazole, something for my nose, some gaviscon advance...

FEV1 was 5.76, 131% of expected.

Blood tests for various allergies.

Told to cut caffeine. Told to ignore the gp advice of coming off antibiotics after 5 days. 2-3 weeks next time I have an exacerbation.

Chest clinic was horrible. Everyone looked like they'd struggled to walk there, and reeked of fags.

Re: Diagnosed with Bronchiectasis
« Reply #38 on: July 20, 2016, 09:57:59 pm »
Self management only works if you know what you are meant to be doing... diagnosed with bronchiectasis 3yrs ago, but only now do I feel like I'm getting a bit of a handle on it. Have felt awful most of the year. Took advice from mates in pharmacy and other patients on Twitter. Have come out of appointment with array of tests (it goes on to a second sheet), two new drugs and the option of a third, instruction to take larger steroid doses, and a referral to physio. Pleased I'm getting treated like others now, but frustrated that it took lots of reading and advice to get to the stage where I knew enough to question how I'm being treated. Having spent the day on Monday discussing structured education for people with diabetes, it's annoying that the same isn't there for my condition.

I went in with a list of tests I wanted, a request for physio, and the hope if get a flutter or acapella. Whilst there was some initial dismissive noise, this was overcome. Once I did a bit of name dropping and mentioned my research interests, everything became much easier. Everything on my list for ticked off. Still, whilst I've got what i wanted, i still don't feel like i understand the casual mechanisms behind the symptoms I get, or am fully in control of the trajectory of my disease. Really, I want to retain the hope that I'll keep my lung function by managing my behaviour, and if I have to take a fucktonne of drugs, I want to know I can control the side effects. I don't think I have all the tools yet, but that's what I am after. I think I'm up to 12 different drugs now.

PF was 700l/min
A1AT was 0.8 g/l

Re: Diagnosed with Bronchiectasis
« Reply #39 on: July 21, 2016, 06:48:49 am »
Wishing you well DrM.

Re: Diagnosed with Bronchiectasis
« Reply #40 on: July 21, 2016, 08:03:27 am »
I can understand how frustrating this is for you not understanding.  I hope you get the information soon

Re: Diagnosed with Bronchiectasis
« Reply #41 on: July 21, 2016, 09:36:58 am »
I am thinking (given I have a research background in informed choice, self management and adherence) I'll end up writing a structured self management course. I think it's a case of finding someone I get on with to provide the clinical info. Got a couple of people in mind, neither of whom are involved in my care (which i think might get weird). I was already thinking I'd get some MSc students to do a systematic review of self management I'm the broad area in the autumn. I suspect there's not enough to do a review specific to non-cf bronchiectasis.

Re: Diagnosed with Bronchiectasis
« Reply #42 on: July 21, 2016, 12:29:13 pm »
Expert patients are really interesting.  I found out more in a couple of weeks about comfortable versus uncomfortable slings than I had in 30 years as a doctor!

Re: Diagnosed with Bronchiectasis
« Reply #43 on: December 25, 2016, 02:48:15 pm »


Pleased with the spirometry results I got in the post - FEV1 (off the scale - ie better than a 6'6 18yr old), the FVC (off the scale), and the FEV1/FVC ratio (well above the 70% figure I need to worry about). I still do my Peak flow regularly, but by the time I'm dropping from the usual 700l/min, I've already twigged I'm coming down with something. I'm finding "all day" resting heart rate on my vivoactive hr is usually a good early warning - if it starts getting up to 65bpm, I'm probably ill.

Re: Diagnosed with Bronchiectasis
« Reply #44 on: February 26, 2020, 02:35:57 pm »
A year off the bike, then a couple of good weeks on Zwift. It's up 4% on FEV1 and 7% on FVC since the beginning of the year.

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Re: Diagnosed with Bronchiectasis
« Reply #45 on: February 27, 2020, 02:53:29 pm »
This is good to see Dr M.

Mike

Re: Diagnosed with Bronchiectasis
« Reply #46 on: February 29, 2020, 06:29:16 am »
This is good to see Dr M.

Mike
Cheers Mike. I got an AIR MD smart spirometer and a powerbreathe K5 a while back. Given my condition, its a good idea to keep an eye on my fev1/fvc ratio.

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Re: Diagnosed with Bronchiectasis
« Reply #47 on: March 16, 2020, 11:00:06 am »
Been doing intervals on zwift and back on the powerbreathe - FVC 6.73l (no change) / FEV1 5.50l (up from 5.27) / FEV1FVC ratio 0.82 (up from 0.78)

Really happy with that. Gives me hope I'll get back towards FEV1 of 5.76