MMaud4 months ago

Hi Hilary. I don’t live with COPD, so can’t offer you any wisdom, but it sounds like you need to have a chat with your Doctor about these issues, to see what could be done to try to help.

Hopefully someone who understands COPD and how it works will come along soon.

CDPO164 months ago

Hi and welcome Hilary. You have done well until recently. Sinusitis could be aggravating your COPD you may also have an underlying infection. Either way I'd suggest you get a check up with your GP or nurse. In the meantime there is a huffing technique which helps to cough up phlegm. I think you should be able to find how to do this on you tube. It may also help you to ask your doctor for a referral for pulmonary rehabilitation which will cover breathing techniques among other things and a range of exercises to maintain muscle strength.When you bend or stretch up instead of holding your breath, take a breath in and then slowly breath out while doing the task.

Best wishes, Carole.

Karenanne614 months ago

Hi! Fellow copd sufferer here. With the caveat I'm not medically qualified, (but like most of us know more than your average gp about our conditions!) It sounds like you have an infection so need a rescue pack and a plan explaining what to use and when. This is usually antibiotics to take if sputum is yukky - and steroids if chest is tight. There are also meds to thin mucus , makes it easier to cough up, breathing techniques and devices to help shift mucus, meds e.g codeine linctus to help intractable coughing, meds e.g. oxynorm to help with feeling of breathlessness. I'm whittering, sorry, but there IS help available. Pulmonary rehab is brilliant as is a good consultant.

Alberta564 months ago

Welcome to the forum, Hilary. I have bronchiectasis not COPD, but both conditions benefit from Pulmonary Rehab and learning breathing techniques. Ask your doctor to refer you. They say exercise helps to strengthen the lungs (hollow laugh if you're feeling really ill) but try to do a little gentle movement while seated. I do breathing exercises in bed. I found my AeroBika really helpful when I was producing lots of phlegm. They or similar devices can be prescribed on the NHS, or bought on the internet. Please don't despair- you'll get over this. xxx

Patk14 months ago

Do u have copd nurse at gp surgery? I'd get am appointment with here or gp to check no infection.what do u do to manage sinuses?It's b a bad winter for coughs lingering for months even in healthy people.i find gargling as far back as can,helps,and a tspn clear honeys gd to coat throat.its worth reading up on " controlled breathing techniques". It's useful to help with breathlessness + for walking,exercise etc x

peege4 months ago

Hi and welcome to the asthma & lung conditions forum.

Its important to get rid of the sinus & lung mucus by whichwhichever means you can, leaving it to fester can grow bacteria leading to infections needing antibiotics. You're right to keep an eye on the colour. Karenanne mentions medication to help soften lung mucus, many many of us with different lung diseases use prescibed CarbocysteinCarbocysteine - sadly it doesn't work for sinuses. Saline rinse can help with that, some use Sterimed from chemist and supermarketsupermarkets. I bought saline nasal rinse called Neilmeds via amazon.co.uk. I also use steroid nasal spray now purchased since gp deleted it from prescriptioprescription.

to adadd to otherothers great replies...we have to advocate for our own health these days, its very rare to find a decent surgery who'll do it for us.

Drinking plenty of fluids also helps to water down the secretions. Exercise as much as you can. Good luck, P

apologies for repeated words, I have a typing fault with HealthUnlocked 🙄

Karenanne61 in reply to peege4 months ago

I just couldn't remember the name of the medication - Carbocystein - so thankyou for that, I knew it began with a C. 😂 It didn't help me but I know it's a game changer for lots of lung sufferers. There seems to be several typing problems at the moment.

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peege in reply to Karenanne613 months ago

there's also the over counter and prescribe NAC ( N-Asytl-Cysteine) that does the same thing as Carbo, maybe that would help you. It has other health qua.qualities too (although I cant recall what they are 🤪)!

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Bevvy4 months ago

Welcome. You would probably find a lot of benefit in attending a Pulmonary Rehabilitation course. This is a twice a week course for a number of weeks. You will learn how to exercise safely (which is key to managing lung conditions) plus how to look after yourself and live as well as possible with COPD. Ask your gp to do a referral for the course.

You will also receive lots of support and advice from here.

chronic20234 months ago

Hi Hilary,

Like you, I was provided minimal information from my doctor, and have been researching and learning on my own. A few days ago I found an article about preventing exacerbations (like you are having), and the more I read the more I realized there are LOTS of things I can do in my home to help myself. Here is the link: blog.lptmedical.com/15-prac...

It's from a blog on a medical site, and a very comprehensive list of things we can do to help slow the progression of COPD.

Cornishperson in reply to chronic20233 months ago

thanks great web site

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PaulineHM4 months ago

Hello Hilary and welcome.

It can I know take some time for us to get our heads around living and keeping as well as possible with COPD.

Everyone is an individual and so often people respond differently to different interventions. One of the best resources for support and education ( apart from here of course ) is

blf.org.uk/support-for-you/... They also have a self care management programme that you can work through.

Helpful people here have mentioned the 6-8 week course Pulmonary Rehabilitation which offers education and exercise however this is only available if people’s level of breathlessness has reached a certain level. MRC level 3 I believe ? Do check this out with your GP though.

pcrs-uk.org/mrc-dyspnoea-scale

A healthy diet supports a healthy immune system so well worth bearing in mind.

Exercise classes can be found locally and is highly recommended. Check out availability with you local social prescriber at the GP surgery or your local authority (council ) wellbeing team.

Ask your GP for a care plan - worth asking for but rare as hen’s teeth.

Learn how to spot symptoms of a flare up /exacerbation

beflareaware.com/

Broadly the fitter you are ( cardio vascular and strength and resistance ), the fewer infections you have then the slower you will deteriorate.

There are other resources to eg Hot Clinics, Acute respiratory hubs coming in but you have enough to be dealing with for now,

I was diagnosed 20 years ago but probably started with symptoms 27 years ago. Lots is possible if you are prepared to work at it.

Keep well.

Biker884 months ago

I have COPD, I have a preventer inhaler and reliever inhaler, the preventer is used once a day and the reliever normally 3-4 times a day. I take carbocistine tablets and have a saline solution nebuliser fortunately I don’t get a lot of mucus. My lung function is about 30% and I use a mobility scooter, pulmonary rehab is good as it teaches correct breathing techniques and the huffing technique for sputum clearing. Your GP can prescribe a flutter device such as the Aerobika to help, an alternative is to use a straw and blow into a 1 litre bottle of water. I now sleep in a semi sitting position as I wake up coughing and spluttering if I lay flat. Bending down stops me breathing so I have pick-up stick’s readily available and as already mentioned if you do have to bend down blow out as you bend. If you have to stay bending look at sitting on a low stool rather than bending or try and bend the knees. I had a recent assessment with a physio to check my breathing and she said my breathing (diaphragm) is fine, but she did recommend Oramorph to help with breathlessness, my GP has now prescribed Oramorph and it is helping by reducing my breathlessness. If you can still manage to walk unaided then you probably don’t need this type of meditation yet. As for exercise I do a seated yoga class via zoom once a week. Stay positive and look for new ways of doing things to make life easier

Lfcpremier4 months ago

Hi Hillary. Lots of good advice. Ask GP to put a sputum sample in to check for infection or exclude it. I suspect sinuses are contributing to the way you are.Good luck! X

watergazer4 months ago

hi and welcome hilary77. I’ve been having similar problems but have bronchiectasis and asthma Currently on my third lot of antibiotics since November. Good idea to get checked out by GP xx

Hopeful14 months ago

Hi HilaryI have looked at Chronic 23's link. While there is a lot of good advice there don't be alarmed by its rather alarming introduction. You are at stage 2 a very very long way from the more severe scenarios warned about.

I am 70 and have lived quite comfortably with COPD for 40 years and progression very slow. Nowhere near needing the more extreme measures suggested on the link many of which seem to relate to much more severe stages.

Good food , excercise and early management of excaberations would be my top 3. Then learning what affects you personally. For me it is weather extremes.

There is much active life beyond your early diagnosis.

gardenalan4 months ago

Hilary I have COPD I have been on medication for 5 years like you I can’t bend down without getting breathless but have changed things like slip on trainers as I couldn’t do up the laces and have learned to live with it and not got any worse I got this dreadful cold which sounds like what you have took me ages to get better but I did get better and am fine now I had to prop myself up in bed with two big cushions and like you I had to resort to kitchen towel for a finish I’m no expert but I don’t think this is related to COPD it really was the worst cold I ever got I think being so careful for so long we are now paying the price I hope you get better soon xxx

Izb14 months ago

I have bronchiectasis not copd, but this sounds to me like your sinus's are infected and needs prompt attention. I had a very bad cold which left all my sinus's infected which my gp and consultant left too long, because of this I had to had surgery which was botched up and am now left with constant nasal catarrh. I urge you to go back to your gp and get onto antibiotics, my ent surgeon put me onto a long term low dose ab which helped x

Lutontown4 months ago

I've had sinus and catarrh from my teens. Had an operation on my nasal cavities 35 years ago which helped a lot. Smoked, mainly a pipe from age 20 to 45. Now have COPD and Bronchiectasis, but keeping all under control with medication such as Carbocistiene which thins the mucus making it easier to shift. I started to take antihystamine as tree pollen starts in January. I've seen catkins on the Hazel near my home, so presumably pollen about. I also sleep fairly upright in an adjustable bed. If I lay flat I tend to fill up with muck. Also, since eradicating Black Mould in our home in April 2018, I've had no chest infections, apart from a 10 day stay in hospital with Pneumonia and Pleurisy. I always keep a stock of sputum pots, and if I felt I had an infection, I would put a sputum sample into my surgery for analysis. I believe it is important to get the right antibiotic to sort the bug that has invaded your lungs. Also, don't forget, antibiotics kill the good bacteria as well as the bad.

direstraits14 months ago

Hi Hilary, I have COPD and Asthma, not heard of a rescue spray but do have a rescue pack of antibiotics and steroids when things get worse and do help to reduce hospital visits, definitely agree with the others ref the PR course I was referred and had one in October November last year did me a lot of good, I also have issues with my sinuses diagnosed with nasal polyps a few years ago and have a nasal drip so know what you are going through, luckily respiratory at the hospital referred me to respiratory physio, diagnosed with a dysfunctional breathing pattern on top of everything else and referred to ENT which is helping a lot so don’t give up have a chat with gp, nurse or consultant and see if they can refer you for any issues. Take care

Loopylorre4 months ago

Lots of good advice on here for you, haven’t heard of a rescue spray, I have COPD & I have a rescue pack of steroids & antibiotics, have you been given one for when you have exacerbations? Pulmonary Rehab is brilliant, not only for exercises but also gives you a lot of information too, good luck, hope you get something from all the advice on here 😊💐🌹🌷 xx

O2Trees4 months ago

Just adding a thought to the great advice you've already had Hilary. You mention the only time when you're well that you get breathless is when bending down (as do others on the thread). If I were you, and this hasnt arisen already, I would have a word with my GP about the possibility of reflux. Stomach acid can leak into your airways and this can cause breathlessness - this is very common for people with copd. If we have reflux (silent reflux where the acid doesnt just leak into the oesophagus but into the actual throat, often with no symptoms like heartburn) our systems make a lot of mucus to try to protect the throat.

I have silent reflux and take medication for it. Also I sleep on my left hand side raised up a bit with a wedge pillow - less acid/bile leaks out as the entrance from oesophagus to stomach is a little down on the right hand side. And I bend my knees to get things from the floor - if this is hard due to arthritis then a grabber would work. And as Peege says, always drink loads.

peege in reply to O2Trees3 months ago

Thanks for that reminder about sleeping on the left side to help with reflux O2, mine's bad recently. I've taken to buying esomeprazole @ £1 per tablet (cannot get through to wretched gp let alone get an appointment 🙃). ××× Penel

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O2Trees in reply to peege3 months ago

Cant get ppi through GP Penel? Bummer. Does (s)he not believe you have it? How strange. Hope you're ok otherwise xxx

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peege in reply to O2Trees3 months ago

its ssuch a struggle to get through to my practice, I haven't managed it since 2019. I trtry hard all 1st week of Jan when had a fever etc. Was in bed for over 3 weeks, I' m sure I needed steroids as well as a decent antibiotic for 2 weeks , I ended up taking my prophylactic Azith every day in desperation. I would have changed practice a year ago but expected to move by November (still waiting)! Slowly getting better though. 😘😘

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O2Trees in reply to peege3 months ago

Good grief! Poor you Penel. Do you not have online access to the surgery? That really is shocking. xxx

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hilary774 months ago

Thank You! So much to everyone who has replied I’m overwhelmed by the volume of replies I appreciate immensely you taking the time to respond & all the excellent advice. I feel like I have been abandoned by my GP given the diagnoses an information sheet now off you go ta ta.

I also have heart problems & currently have a heart monitor inserted in my chest which I’m monitored 24/7 they seem to focus more on my heart & not so much on my other serious medical conditions.

I cannot begin to explain how much your replies & reassurance mean to me as my hubby doesn’t really understand the implications of COPD neither of us had even heard of it before diagnosis.

Thank You all from the bottom of my heart, it’s reassuring to know if I need help or advice I will get it here.

Kindest Regards

Hilary

Karenanne614 months ago

It really is a most supportive group of people! I'm glad I found this group, as you must be. I mentioned it to the respiratory physio who led my pulmonary rehab ( it continues at the gym I attend for pilates so I bump into him occasionally) and he will pass on the group's details to any pr attendees who are interested. There are some very wise and talented people here.

Timberman4 months ago

I am 79 and now stage 4 COPD with a side order of bronchiectasis, congestive heart failure and 19 years out from surviving leukemia. I was diagnosed with Emphysema some 14 years ago and was then stage 2 like you.

I am breathless pretty much all the time if 'doing' anything and use oxygen 15 hours a day.

I was a heavy smoker until age 53 and my mother and her mother both dies from lung disease (probably emphysema).

So... advice.

First - you refer to a diagnosis but this is not easy or absolute so make sure you know what disease it is you have. If you smoked then emphysema is the higher probability. But it could be bronchitis and thus comes and goes.

Seek out the COPD team locally - they know more than GPs (the clue is in that word general) and nurses at all levels are focused on care and treatment, not diagnosis and prognosis,.

Take and follow all their adv ice.

Make sure you are on the right medication (never heard of a rescue spray - I am guessing it is actually a salbutamol inhaler. This is helpful but actually better for asthma. I use mine at least three times a day.

Try to ensure you have a written treatment and action plan - and do you best to stick to it.

Try to get on a Pulmonary Rehabilitation Course locally - this is 12 weeks of two 2-hour sessions in a group with a physio and a COPD nurse dol9i8ng exercises and learning about your disease. I have been on 12 (!) and they were brilliant; I am not now rated fit enough for another. Boo hoo.

I could go on (I know, everyone complains!) but my best advice is fight it and never give in.

All the very best Hilary77.

bogo3995 in reply to Timberman3 months ago

A rescue spray is an albuterol inhaler, also known as an emergency inhaler.

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Timberman in reply to bogo39953 months ago

Yes, a salbutamol inhaler for helping breathing; hardly a 'rescue'! But I think I may be in the UK and this is the US?

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bogo3995 in reply to Timberman3 months ago

yes, I am in Lakewood Colorado ISA

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Timberman in reply to bogo39953 months ago

>>Salbutamol, also known as albuterol and sold under the brand name Ventolin among others, is a medication that opens up the medium and large airways in the lungs. It is a short-acting β₂ adrenergic receptor agonist which works by causing relaxation of airway smooth muscle<< UK

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bogo39953 months ago

Hilary....so sorry you are having a tough time. I too have severe COPD....when I keep hacking and have some coughing, I use a Netti rinse.....squeeze bottle with prepared salt mixture (in packets), hot water + 1/2 teaspoon hydrogen peroxide to rinse my sinuses. It seems to help. I also use an apparatus that I blow in which helps bring mucus up. I hope you feel better.

hilary773 months ago

I have been taking all your advice thank you! please see below:-

hi everyone just an update GP put me on antibiotics which I think is helping. As per suggestions here I rang surgery yesterday to see if I could have a rescue pack, got a text message from surgery pharmacist today to say I need to ask respiratory nurse if I could have them, I tried to contact the Respiratory Nurses on the phone no’s written on the sheet given at time of diagnoses the Lancaster hospital phone number which is out of use so I rang the second phone number Furness general hospital to see if I could have a Rescue Pack managed to speak to a respiratory nurse who just told me I need a referral from a GP?? Im totally confused now!

I have a steroid nasal spray that I already use perhaps too much, I originally got it on prescription but have to pay for it now.

I have been taking all your advice onboard ..

thank you! 👏👏

I have purchased Hangsun compressor nebuliser

(model CN950) plus Hypertonic saline 7% vials both received yesterday

Question: does anyone have any knowledge of the Hangsun Nebulizer the instructions are useless doesn’t tell me what to use the various different attachments for or how to use them. I’ve been googling but cannot find any useful information or video.

It also has a nasal attachment which I thought would help with my nasal problems.

I’ve also ordered N-Acetyl Cysteine (NAC) 600mg 180 Capsules UK Made Pharmaceutical Grade Supplement coming today.

Truthfully I have no idea what I’m doing hopefully I’ve purchased the right items to help me.

all I want is not to feel like I’ve felt this last couple of months.

Again thank you! ❤️

Kindest Regards

Hilary x

bogo39953 months ago

Hi Hilary! I have had COPD for about 17 years now....I am 80 and still very active although I have severe COPD! I am on 4 ltrs. oxy at night and only use Trelegy Elipta in the morning. The only thing that really bothers me is if I go above 1100 feet altitude. I do have an albuterol rescue inhaler but have only had to use it twice in the last 17 years. Just stay positive, my Dear......we will all stick together and try to support one another.....Hugs