Newbie and Not sure

[SezBF]

Hey everyone

I have been newly diagnosed with bronchiectasis. This was given "officially" over the phone last week by the GP. I haven't had much contact with my respiratory consultant as undoubtedly he is busy with COVID right now! This has left me feeling quite unsure about having been diagnosed with a life long condition to manage myself, as the info I've been given is quite limited.

Fortunately I have a good support network of friends and am reaching out to some of my uni resources for info on managing this condition. However, I really would love to hear some of your personal stories about being diagnosed and how that left you feeling because I do feel a bit alone in this.

Also, I would like to know if anyone else struggles with general energy fatigue and congested sinuses? Both of these have been ongoing issues for the last several months. I am 28, normally live a healthy and active lifestyle. Adjusting to not being as active and able as I have been is quite frustrating. Does anyone else relate to that? Or are there people that used to find certain exercises tiring early on in their diagnosis that they are now able to do? I'd love to hear some of your journeys with this condition and how you've adapted your lifestyles around it? And has anyone struggled with blocked sinuses and got tips for that?

Any tips, helpful lifestyle facts, breathing techniques and uplifting stories appreciated

Have a good day

Sarah

[NorthernGirl3]

I was told by the specialist but given no further information and I was so relieved to find that it wasn't lung cancer I didn't ask! I have found the physiotherapy department the most helpful so when it is possible again ask to be referred. They can tell you how to clear your lungs and about exercise. It does make you tired and I certainly have problems with my sinuses. I also suffer from hay fever and asthma so that does affect everything else. I've been told to drink plenty of water which helps to thin the mucus. Psychologically I've found it helpful to view Bronchiectasis as a condition to live with and manage rather than an illness that might get better. Good luck, be kind to yourself and give yourself ( healthy!) treats.

[Tinker26]

My daughter regularly suffers with sinus issues ,her specialist advised to use warm salt water in a netipot which can be bought from most chemists as bacteria hate salt ,hope it helps x

[Nonactive]

Hi Sarah,diagnosed 5 years ago.I had so many lung infections over nearky 10 years i realised something must be wrong.went private 2 get answers..Im afraid im fatiqued alot of yhe time and my previous life as an athlete is over.However my infectiins are now controlled pretty well by taking antubiotic in lowdose every other day.This may seem extreme but it is necessary for some with bronchiectisis..My energy has never returnedbut you are fair bit younger than myself and i believe you have a good chance of living your usual life /activities in the near future..Goodluck.Alan..

[SezBF in reply to Nonactive]

Thanks Alan. That was really kind of you to reply. I am sorry that you haven't been able to return to your previous athletic lifestyle. I hope that you have found new joys in life though. God bless

Sarah

[Lulibell80]

Hi Sarah. Like you I was diagnosed by my gp after having a ct scan. I’d had what felt like a chest infection for about 5 months and antibiotics weren’t clearing it up this time. I also lost about a stone in weight and felt exhausted all the time. Like northern girl I was terrified I had lung cancer. 5 months later I feel a lot better although you will need to adapt. A lot of my hair fell out after I was really ill but it is growing back now and I’ve put all the weight back on 🤷🏻‍♀️ My appointment with the lung specialist and physiotherapist have all been postponed due to Covid. These boards are really helpful to educate yourself. My lungs have always been my weak spot. I had whooping cough when I was a baby so that’s probably when the damage was done. Since then every time I had a cold it often resulted in a chest infection. I have asthma too so my routine may be different to yours and I’ve had a lifetime already of managing my lungs. the inhalers help to keep my airways open and reduce the amount of mucus, carbocysteine to thin mucus, a nebuliser with saline solution again to help thin mucus followed by breathing exercises with a flutter device to cough it up. Your gp should be able to prescribe you these things. You may not feel like exercising, I have only just started again after being really fit before. I think the lock down is helping me in lots of ways. I sleep for over 8 hours and with spare time from not commuting I have started doing Zumba and skipping. I still get tired though, and you’ll need to learn how to pace yourself. I work in an office with no air con which I love, I avoid air con like mad as it carries so many bugs. So be careful flying if and when we get back to that! Supplements I Have always taken, now I take vit c, d and a mushroom supplement for lung health. I use first defence and naseleze travel. I also have ntm ( lots of ppl with bronchiectasis get this) which is from mycobacterium in water and soil. Not much can be done about this but if you don’t have it I’d avoid swimming pools, jacuzzis etc. Basically you just have to really look after yourself to try and reduce complications and flair ups which may cause more damage. I’ve also bought an air purifier and dehumidifier for my house. I’ve also limited the use of perfumes and chemicals as these adversely affect me. Me and my boyfriend joke that lockdown hasn’t really affected us as we are homebodies anyway 😊 take care xx

[SezBF in reply to Lulibell80]

Thanks for the reply Lulibell80. Sounds like you're really on top of your health now. Can I ask when you got diagnosed and how long it took for you to get used to adjusting to your way of life. I know we're all different but I would be interested to know this to help manage my own expectations. I'm using different positioning techniques to drain my lungs morning and night. I spend about 15 mins in both side lying and front facing positions and finish with some ACBT breathing. I have used sinus rinses and started on a nasal steriod spray too. I hope that they will both help with managing my lungs and sinuses. However, I had heard the nebuilser is helpful. Do you find that you use that quite often?

Thanks again for the detailed message

I'm glad that you are managing well during the lockdown too.

[Hidden in reply to Lulibell80]

Actually I may have good news. My respiratory physiotherapist (and a number of other sources) say that these days the air you breathe on an aeroplane is very effectively filtered, so it's probably amongst the cleanest air you'll ever breathe.

I recognise that it seems easy to pick up a cold after flying, but I've heard a virologist say on the radio recently that this most likely comes from those plastic crates you have to put your stuff in to go through security. Apparently they are circulated round and round and never cleaned. As he says, what do most of us do after successfully getting through security? Go and get a coffee and a cake! He recommends hand-washing immediately after security and we should find it much better - whether we have bronchiectasis or not.

I'm hoping this is right as it sounds quite positive!

[Lulibell80]

So I had an asthma review in April 2019 and told the asthma nurse that my meds didn’t seem to be working as well. I hadn’t felt like myself for a while before that - less energy, coming home from work and not doing much else. In May 2019, I seemed to just get a ‘chest infection’ out of nowhere as I don’t remember having a cold, I had 5 courses of antibiotics, steroids (prednisone -I had really bad side effects from these and I will try to avoid in the future). I was really ill until about November, maybe it was a flare up. I had to sleep upright most nights. I don’t think I started to feel better until I came off the prednisone and started with the new meds and regime. I still rattle/wheeze slightly when I breathe but it’s manageable and not much can be done until Coronavirus is sorted. The nebuliser and the flutter helps me get the mucus off my chest when it feels ‘stuck’ and I can’t cough it up. I generally only use it when I feel I need to but I probably should use it daily. I think it does help to ‘invert’ yourself and be ‘prone’ as gravity assists so it sounds like you are doing the right things. There’s a girl on YouTube with CF and she did a good video on lung clearance - Her channel is called the Frey life. Every day is different but you will learn to listen to your body and I usually feel better after a good nights sleep no matter how bad I felt the day before. Also I think it helps if you have something you can do to take your mind off being ill/ not being as active as you used to be. I’m studying part time as well as working full time and thought about giving my course up, but realised that it is a bit of a life line for me. I’m viewing it as my new hobby rather than a source of more stress! 😀

[Cade1]

Hi Sarah

I can relate to blocked sinuses. I have blocked sinuses a lot & my consultant reckons that my bronchiectasis is linked to post nasal drip from my sinuses. I take Nasonex nasal spray ( ia steroid) to cope with the sinuses, which helped fairly well up until this December. They were soo bad for 5 weeks, so I’ve now been referred to see an ENT consultant - it was my respiratory consultant that referred me!!

When my sinuses are really bad, I take Sudafed which I can’t take at night as it stops you sleeping. Sudafed isn’t for everyone as it contains pseudoephidrine, which can cause an increased heat rate.

I also try steam inhalations which doesn’t really help, apart from reducing the headache, but I feel that I’m doing something.

[Aljm in reply to Cade1]

Hi,

I also have bronchiectasis which is made worse by constant post nasal drip which I can’t seem to stop which then causes lots of coughing. I have tried a nasal salt rinse spray but wondered if you have found anything that works?

Alison

[Cade1]

Just re read your post. I was diagnosed with Bronchiectasis in 2006 & I haven’t let it rule my life. As others have said respiratory physios are brilliant- I used to work with physios & they taught me various breathing techniques for when I needed them. One good one is the active breathing cycle that is helpful for me.

I also go to the gym (well used to before lock down) & for me that has helped keep my bronchiectasis mild.

There are times, like now, when I am feeling breathless ( after having either Covid or a bad chest infection), when I feel a bit down. But I have a good personal trainer (from my gym) that has given me some exercises to do on the days I feel well.

You could ask your GP to refer you to a respiratory physio until you see your consultant again as that may help give you some confidence about managing your bronchiectasis.

[Damali68]

Hi, SezBF I am in the same position I have just be diagnosed over the phone and would love to know the same things the fatigue for me has been happening for a good 6 months... looking forward to hearing others stories!

Have a lovely day

Sharon

[SezBF]

Sorry to hear that Damiel68. Have you had any more helpful information given ?

Looking forward to hearing if your energy symptoms improve.

Also - Sharon thank you for your replies. Have you had any useful information from ENT consultant?

I'd also be interested to know if anyone with this has found pilates/similar exercise helpful? It is something I do regularly which I find I can do even when my energy is low. It might be good for others too.

Thank you

Sarah

[Raggers82]

Hi Sarah , I was diagnosed 9 years ago after a bought of coughing up blood on the evening of my 29th birthday ( great present 🤒) After going to a and e and having numerous tests a couple of days later I was given the news that I had bronchiectasis which at the time meant nothing to me as I had not heard of this disease and was just relieved that I did not have lung cancer. As I had no other symptoms I was discharged and went about my life as normal, I was slightly perplexed as after googling and looking up things I realised that this was something that probably wasn’t going to go away and that coming winter i had a series of chest infections and mucus issues which did not seem to clear up. After going back to see the consultant I was given antibiotics and an managed programme of what to Do when I get an infection as well as given physio to help with chest clearance.

As the years have moved on I have managed to live with this condition as a minor irritant and gone about a normal life, working hard and having kids, without letting this define me. There are times when I feel alone and scared especially when you get an infection and other folk don’t seem to understand , but there is no reason if you look after yourself you can live a normal, long and healthy life. I can understand you must be anxious , especially in this current COVID climate but as you are young I think the risk is a great deal smaller just be sensible and follow the guidance.

I would say one of the key things to do is make sure you are under the right hospital as Treatment and care can vary dramatically across the country. I would recommend one with a specialist lung unit ideally cf centre as they know all about bronch. If you are in the south east I would recommend the Papworth, who I got transferred to 3 years ago as they have a specialist lung defence unit and are a global specialist of lung and heart disease . The other key thing is look after yourself and excercise and eat well. I have been running 4k a day every day on lock down and Even though somedays it kills me , I fight the exhaustion and I can honestly say I am starting to feel the benefits now with clearer lungs.

[Debbie2005]

Dear Sarah I’ve just seen your post from 8 months ago. I was diagnosed with mild bronchiectasis on Christmas Eve and because I’ve never heard of it and don’t know anyone else who has it I feel very alone and devastated as I only thought I’d got a gastro reflux cough. Just wondered how you have coped with it and wondered if you could advise where to go to find out everything you need to?

[SezBF]

Hi Debbie.

Thank you for your message. Apologies for the delay in replying. First of all I am sorry to hear about your recent diagnosis - and on Christmas Eve too! As someone said to me when I thought I'd just been diagnosed with bronchiectasis - what a blow! I know the feeling of having the news and it was good to find an online forum to help me feel I wasn't alone after hearing that.

Second of all - I want to say, with sensitivity, have you had your diagnosis confirmed/clarified? I say that as just today I had an awaited ENT appointment and the v.helpful consultant there informed me my symptoms were actually from having chronic sinusitis - which apparently is treatable.

However, if you are sure it's bronchiectasis, the few tips I'd say are this:

- Keep organised: By this I mean keep on top of your appoitments with dr's/consultants and despite the v.busy time with COVID, you are still one of their patients. I know waiting times are long in NHS but if you feel your concerns are not being heard, raise that by sending emails to secretary's and ask for more info if you need it! (found out that having complaint in the email title comes in handy for quick replies! That said, I know the endeavours and hard work these people put in so I am not trying to disrespect that either)

Also - keep a track on your phone of your medications and any changes/start dates - may be helpful in future if you've been asked what antibiotics you've been on.

-The all time classic - be kind on yourself! So much easier I've found to say than accept. But if you're body is feeling exhausted, then listen to it. I am a very active person who likes to exercise so have found this the hardest part of my journey. Some days having a 10 min walk would be enough and tire me out for a day or two after. So pace your exercise and learn what your limits are.

- Be creative - find other ways to keep you entertained. I tried to take up some lino printing as a sedentary activity that kept me occupied while not having to be on my feet.

- Get outside and eat well! My sense of smell has gone (sinusitis related) but I still found that eating nice food made me feel more normal, so try to keep to a healthy diet that you like.

Int terms of where to go to find out advice, these websites are useful:

blf.org.uk/support-for-you/...

bronchiectasis.azurewebsite...

I hope that helps. I'm sure others on the forum may have further advice about bronchiectasis if you would like that.

I wise you hope for the future and peace for the present.

Sarah