new to bronchiectasis follow up

[Emily-G]

I had my consultant appointment today with my usual asthma consultant, my first appointment since my ct scan confirmed bronchiectasis with pseudomonas. She says both lungs are affected, the whole of 1 and the top half of the other. I will be starting a 3 month trial of antibiotics, and I am getting a butterfly thing to help me clear my lungs. I’m on the waiting list for pulmonary rehab. No change to my inhalers, relvar, spiriva, montelukast tablets, salbutamol inhaler and nebules. I am trying to cut down on caffeine, up non caffeinated fluids and trying to eat healthily and walk on the flat for 20 minutes a day.

It’s a lot to fit in (feels like for now) and I feel a little overwhelmed - I just need to get into a good routine. Thank you again to everyone who replied on my last post, it was lovely to hear from you all and to feel less alone with this new thing

I hope you are all feeling well and that the sun is shining where you are

Emily xx

[Alberta56]

I'm glad you've had a decent consultation and that the new regime will see a definite improvement in your health. I started drinking decaff coffee when I was diagnosed- found the only one I liked was expensive Clipper. (Still it's good for the rain forest and the growers). Healthy eating means trying to sneak more vegetables into our diet- my husband is a total carnivore, but he's not too bad about veggie food. As for walking on the flat, you're doing better than me. We live on a hill- you can't get very far before it slopes. Good luck. I hope once you've got into your routine it will be easier.

[Emily-G in reply to Alberta56]

I’m on a hill too, so that’s a tricky one for me too.. I am vegetarian so the vegetables is likely the easiest bit for me 😂 I did try giving up milk before to try to reduce all the gunk but it didn’t really make any difference so I stopped. I am fuelled by caffeine though so cutting back on that is a challenge.

My young adult daughter is autistic with almost no speech so caring for her round the clock is quite hard going sometimes, I’m trying to get her routine and mine to fit together . She was very upset by me chest clearing to begin with but is getting used to it

Thank you for the tip on Clipper decaf, will have to give it a try xxx

[Alberta56 in reply to Emily-G]

My daughter is autistic too, but high functioning and she has her own flat. Still she comes to mother with her problems and quite frequently to be fed. She has always hated the sound of coughing, so I had the same problem with chest clearance. Managed to convince her that these are good coughs. It's hard to do chest clearance quietly. 🤐🤐😯😡 Hope your daughter will accept that too.

[Emily-G in reply to Alberta56]

I’ll try to do a picture story for my daughter to explain a good cough, fingers crossed, there are a few noises she really can’t stand but hopefully she can get used to this one xxx

[Alberta56 in reply to Emily-G]

Autistic daughters certainly give us some brain training, finding ways to explain things to them.😊🥰🥰💖

[Emily-G in reply to Alberta56]

they certainly do, this afternoon my daughter stood and rubbed my back after my chest clearing - this is the most relaxed she has been about it and a good sign hopefully that she is getting used to the idea (fingers crossed) xxx

[Alberta56 in reply to Emily-G]

That sounds promising.👍

[YummyBear in reply to Emily-G]

I use Lactose-free skimmed or semi skimmed cartoned milk (from Lidl chiller £1.09) which has made a difference to the junk on chest. I only seem to clear the 'frog in my throat' nearer night-time but certainly this milk has helped me (I have mild bronchiectasis).Also, I bought a small facial steamer 2 years ago to use solely to inhale steamed water, which helped clear the mucus from my lungs. Because I use the lactose-free milk now, I dont use the steamer so frequently.

[Emily-G in reply to YummyBear]

I have a little face mister in a box , I hadn’t thought of trying it for loosening gunk, I’ll give that a try

I did change from cows milk over to oat about 18 months ago - I do love an oat milk latte

Thank you for the face steamer idea xxx

[YummyBear in reply to Emily-G]

Hi Emily-G. I used a bowl of boiled water with a dollop of Vicks vapour-rub to steam-clean my lungs when I had whooping cough on 1983. The GP advised I boil pots of water to leave on the stove so as to let the steam help my 2 and 8 year olds to breathe easier as they too had whooping cough. I remembered this when I was diagnosed with mild bronchiectasis in May 2020. Hence the small facial steamer was helpful in un-clogging the junk from lungs.Also, lactose+dairy free foods have helped alleviate the milky coating has lessened the mucus it leaves in the throat areas when having creamy and milky foods.

[Emily-G in reply to YummyBear]

before covid I used to do facials, During lockdown I did guided facials online - as part of the parcel I sent out lovely fresh herbs for facial steaming. I’m just thinking that might be a lovely thing to do for myself, a herbal steam

My mum always had me doing a vick steam whenever I had a cough as a child.

[Jaybird19 in reply to Alberta56]

clipper are good for hot chocolate too . there are to two . the most expensive one has less sugar but i cannot get it now fro sainsburys , sugar is cheaper as a filler too

[Emily-G in reply to Jaybird19]

I do love hot chocolate. If I can get myself down to 1 cup of coffee a day hot chocolate could be my reward

[Jaybird19 in reply to Emily-G]

try the hot choc and resist the temptation to have coffee you might find it helps after a while doesnt choc have caffeine too ?

[Emily-G in reply to Jaybird19]

I’m loving this idea

[Morrison10]

Sorry to hear your current Problems, pleased for you having a good consultant, made big difference for me when I found one who understands my rare condition. I’ve got bronchiectasis and had pseudomonas etc, but proper medication cleared my lungs. I’m now on one Azithromycin daily, have been since last December, and I’m ok. Good luck best wishes, Jean x

[Emily-G in reply to Morrison10]

Azithromycin is what they have given me for a 3 month trial - I’m doing 3 times a week. Consultant is hoping it reduces inflammation and damps down the pseudomonas

My consultant really was kind and helpful today and my GP has had a patient with bronchiectasis before (but no pseudomonas) so that’s all good

That’s great to hear that the azithromycin has helped you, fingers crossed

Xxx

[Patk1]

Hope u can get yr daily routine sorted+ make time to get mucous up.its ok once yr organised + fit it in with life x

[Emily-G in reply to Patk1]

thank you

[B0xermad]

All positive steps to coping with the conditions will keep you well and manage better,pulmonary rehab is a brilliant stepping stone to a life that is different from before but a good thing to do

[Emily-G in reply to B0xermad]

The 2x weekly part will be tricky for me to fit in but I’m really hoping it will make a big difference to me, fingers crossed

[Izb1]

Am interested what the butterfly thing is for clearing your chest Emily, can you give us an update when you get it. Sounds like the antibiotics will benefit you, alot on here are using them with good reports. I couldnt take to the Clipper tea but have changed to Tetley decaf and found them to be good. I have one cup of coffee in the morning and am happy with that and cut down to 3 cups of tea a day and have water the rest of the time. No sunshine here in Manchester this morning after a bad night with strong wind and rain overnight but looking forward to the weekend's good weather x

[Emily-G in reply to Izb1]

turns out the butterfly thing is a flutter. I’ve had a try with it and it certainly gives my lungs a shake. I’ve coughed up some gunk and now feel a little tired - not sure if I’m doing it wrong, but at least it was easier to get some gunk shifted

I’m sat here with a hot chocolate instead of my usual coffee, will move onto water for the afternoon.

It’s a keeping cosy day here, feels like we ve gone back to winter xx

[Izb1 in reply to Emily-G]

I have an Acapella device and sometimes use it to help shift he mucus and yes it sure feels like we have gone back to winter today am looking forward to the heatwave starting this weekend x

[Nula2]

Hi Emily, 🙋‍♀️ I have Bronchiectasis, recurring Aspergillosis and Asthma (as well as other health issues). I find it hard to remember all the breathing techniques and how to correctly use my clearance device, inhalers etc but try my best. I try to eat very healthily and get as much exercise as I can manage. I know I don't always get it right. What I'm trying to say is just do the best you can because every little thing helps. Take care and keep us posted 👍 🙂xxx

[Emily-G in reply to Nula2]

that’s a great way of looking at it, every bit of mucous I get shifted is a bit less in me .

Thank you xx

[Nula2 in reply to Emily-G]

Yes that's what I think and on the days when you get it (almost) right it makes you feel good about yourself 🙂👍xxx

[Afibflipper]

Hi Emily -G, I really sympathise and empathise with you completely. I’ve had Atrial Fibrillation for about 15 years and asthma diagnosed 47 years ago but had it about 50 years. Diagnosed Bronchiectasis in February this year. Due to the heart I’m having to build slowly on exercise like you on the flat. My son has had Bronchiectasis since he was 14 and is now 28 - initially he couldn’t exercise, needed continuous back to back antibiotics but over the last few years he’s taken up going to the gym and and built up his exercise tolerance and lung capacity, plays football and is fitter and outruns the other players and rarely needs antibiotics and has completed 2 full events of Tough Mudder (a very hard endurance assault course. We both get affected by pollens and moulds so summer can be troublesome but so can winter - when the leaves fall in autumn they rot and cause mould also in old plant pots soil so be aware. So, it’s not all doom & gloom, slow & steady build up, he and I both go caffeine free, there is a pepsi that’s caffeine & sugar free, if you use a coffee machine I used Dolce Gusto decaf cafe au lait pods or for tea decaf PG tips or Tetley tastes just like the normal ones. I choose to eat less salt on a daily basis and do get affected if I have something that’s got a lot in it - sends BP up and get palpitations I’m sure you’ll be fighting fit soon take care x

[Emily-G in reply to Afibflipper]

that is great to hear about your son’s fitness - sounds like he is more sporty than most healthy lung people.

Pollens and moulds are triggers for my asthma too, I do best on seaside days out, luckily we live quite close to the coast.

Slow and steady you are so right xxx

[Karenanne61]

Sounds like a beneficial consultation. I hope a space on a pulmonary rehab course becomes available for you soon, it certainly helped me. Just a note re. caffeine, I am a proper 'tea baby' but switched to decaf tea, as advised, ages ago. Initially it was hard to find and very weak, now a lot of the big companies are making tasty strong decaf tea. I've also just started Yorkshire tea's Bedtime brew as I struggle to sleep and it's helping a little.

[Nula2 in reply to Karenanne61]

Hi Karenanne, I hope you don't mind me asking but have noticed a lot of people saying they're caffeine free. Is this advised as a general health tip or particularly for people with lung problems? I drink 2 or 3 mugs of tea a day and one mug of redbush tea before bed. Thank you 🙂xxx

[Karenanne61 in reply to Nula2]

I was advised to go caffeine free by a speech therapist. I saw her after a thyroidectomy and again following respiratory failure which resulted in a coma, mechanical ventilation etc. In my case I think it was more to do with caffeine causing dehydration, especially of the throat. I think, in some cases, it can improve lung function! Also, caffeine can increase the heart rate which causes shallow breathing, not good for those of us with compromised lungs. I also think decaf is better all round. Our house is decaf free and visitors can't even tell the difference!

[friendly in reply to Karenanne61]

my consultant advise on food and drink for my bronchiectasis and asthma is eat healthy food and not put on to much weight and decaf or not makes no difference.

[Karenanne61 in reply to friendly]

Yes, it was the speech therapist who advised no caffeine. Oh, and not before blood tests either as caffeinated tea acts as a diuretic!

[Nula2 in reply to Karenanne61]

Ah thank you 🙂. Will maybe have just 2 mugs and make it weak to start with see how it goes. Also trying to find the cause of my really dry mouth (especially at night) I'm assuming it's either my Fostairs inhaler or mucus thinners but don't know for sure. Anyway thank you and take care xxxx

[Emily-G]

I do drink a lot of tea, I always forget that tea has caffeine too. Luckily I drink my gallons of tea weak so hopefully I will get on with the decaf

Xxx

[Karenanne61 in reply to Emily-G]

Although we drink lots of tea changing to decaf was not a problem. Some cafés don't offer decaf tea, (they'll ask if we want decaf coffee! ) but most do and the odd cup of caffeinated isn't that much of a problem.

[YummyBear]

Hi Emily-G, two readers mentioned that they take a 'Flat walk' but am I to assume if they walk up on a gradient that it will cause uncomfortable symptoms. I have mentioned in the past that I was diagnosed with mild bronchiectasis by pure chance from a new GP who was dealing with another ailment but asked about my cough. I said I'd had it on and off after a cold, perhaps twice yearly since 1983. He referred me in late 2021; by 2020 it was diagnosed as mild. Apart from the cough, I always had a burning sensation when walking up a slight hilly road. In 3 years, I have never had a follow up with a Respiratory Team nor found it necessary for sputum tests. I have used rescue packs of a/b occasionally but the burning sensation is worsening. Is this a sign that the bronchiectasis is changing? I have had more pressing ailments, so not mentioned anything to GP, as 10minute appts are not enough to discuss in the time allotted.

[Emily-G in reply to YummyBear]

I am very new to bronchiectasis but am a lifelong asthmatic diagnosed with severe asthma after my youngest was born. I really struggle with walking uphil, get very breathless on stairs. It was my physio who recommended daily walking on the flat. It sounds like maybe your symptoms are becoming more troublesome. If I was you I would mention to GP,, it is v tricky to get appointments sometimes but could you ask for a double appointment? Hope you feel better soon xxx

[YummyBear]

I hadnt thought to ask for 2 Appts, I just might do that after my appointments with ENT Cons and Ophthalmic Cons. Old age, ugh!

Thank you kindly.