British Lung Foundation
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Newly diagnosed - symptoms suddenly very bad

Hi all -

My 50 year old husband was diagnosed with COPD about 3 weeks ago. I had been begging him to go and see a specialist as I knew something was very wrong. He was wheezing at night, often very short of breath and has been a smoker since the age of 13. He was diagnosed after a CT scan showed emphysema at the top of his right lung. But at that consultation he was just referred to the Royal Free respiratory department. No medication apart from a course of antibiotics and steroids. No breath test, no advice about inhalers, no explanation as to why it has suddenly gotten so much worse.

So now we are waiting for an appointment at the Royal Free and trying hard to figure out why since he has stopped smoking his symptoms have gotten so much worse. I feel he has bronchitis, he has such a bad cough suddenly and sneezing, no temperature though. Antibiotics and steroids have not improved things. I have a bad head cold feel crappy from it - could he be having a bad exacerbation from a virus?

To make matters worse he has diabetes type 1 and the course of steroids has affected his blood sugars. At night now he finds it hard to sleep with the coughing, but its very unproductive, nothing seems to be coming up.

I am sick with worry - my wonderful kind sweet husband is suffering and I am helpless. He is beating himself up over being a smoker - filled with guilt at how this impacts his family, constantly apologising to me. I tell him I know he never meant for this to happen, he had a horrible childhood and it's amazing that he never had a drink or drug problem! The cigarettes were his crutch, helped him survive....

Sorry for the rambling but any advice or pointers would be very welcome.

x

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Morning my Dear, Well, this is so Predictable, gave up smoking, got worse.....Yes, It takes Time for all the Meds to distribute to the correct places in the Body and Your Poor Hubby will Suffer for a little while, I think most of us on here can relate to this. I didn't have a Spiromatry Test immediately. I was Diagnosed initially with Bronchitas, and as it Progressed was Then Told it was COPD in 2013, over the course of 5 Years my Steroids, Preds, Antibiotics have all Slotted into my Bodies Lungs and although my Left is Mush my Right is ok with Valves. It is a Vicious Circle for awhile, but Honestly he will start feeling better soon, He is so Young, same age as my Hubby, I feel for you. To watch your beloved suffer, keep being Positive for him and encourage him to try and Breath through the Nose and deeply exhale through the mouth if he can. All Exercise for the Lungs is so beneficial. Please keep us Posted Hun. Love n Hugs xxxxx

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Most of us here are ex smokers , we have learnt to dismiss this Guilt as it was not our fault and Non smokers also have COPD, Please tell him he should not blame himself. XXX

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I am sitting here sobbing now - your kindness has really touched me. I feel like I have been keeping the sadness in, trying to stay strong for him and keep everything going. He has started exercising but he feels so rough it is hard for him to stay motivated.

So your advice is it will feel worse for a bit until he has his meds sorted and they start taking effect? Thank you again for your reply - I can't tell you how much it means to me x

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You want to start a "Sunday Cry In"? You will look back and Value what you both had to go through to get to The Right Place. My Hubby Cried quite a few times over me, Stay Strong &Positive Hun. Lots of Advise will be coming your Way from our HU Family here, Its good to Have Arms reaching out to help you. Love n Hugs XXXX

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I would love a Sunday cry in! I am in a wet and windy Cornwall, on holiday by mistake! The electric hob isn't working and I can't find any matches to start a fire....as you say we've been through tough times before and it always makes the bond stronger in the long run ....

Thanks for the wise words xxxxx

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On holiday by mistake?

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quote Nithnail and I? There must be a friendly farmer!

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I was diagnosed with emphasaemic changes copd 6 months ago. Gave up smoking then. Doc said will feel worse before better. Took 5 months after quitting to feel the benefits. Tell him to hang in there. Things will get better. 🐾👍

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Absolutely true same with me Flatcoat it takes a little time .

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There is no rhyme or reason .I am a non smoker and have copd bronchiectasis and asthma do not feel guilty over such issues look to the here and now x

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Hi & welcome,

Book an appointment for him to see your GP, write down all your questions before attending, ask for a sputum test (to identify the infection as other antibiotics may work better than the current ones) and request a referral to a local Pulmonary Rehabilitation course (a.k.a. PR) which, over a few weeks will help to understand COPD, protect him from exacerbations (infections) and learn how to live with COPD.

I stopped smoking in November and was diagnosed in March (a few years ago) so, yes, getting diagnosed AFTER stopping isn't uncommon.

Most (but not all) people are prescribed with inhalers of varying types to manage the condition and "emergency meds" (Steroids & antibiotics) for when we have exacerbations (infections).

Whilst he probably sounds & looks awful, once he gets the right AB's he will start to improve within a couple of days … but get used to recovery taking a bit longer than for a healthy person recovering for a cold - a couple of weeks to complete recovery is quite normal.

Best wishes

p.s. PR - you can join him and learn with him at most groups if you want to

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Yes I feel he needs a sputum test - he is on co-amoxiclav but it is not helping. I really feel he has a bad case of bronchitis on top of the COPD that has not yet be treated effectively. He has seen GP and they have given him an inhaler Braltus, which helps a little. Next week he has his first appointment at the GP's respiratory clinic, so I am hoping they give him a proper work up then. The consultant at The Royal Brompton told him not to bother with the Pulmonary Rehabilitation ... he said he was to healthy and young. So confusing. Thank you for your input.

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I just want to welcome you to HU as you will always get helpful friendly advice here from a great group of people.

Don’t despair, it’s all new to you both at the moment but things can and will improve. You’ve had two brilliant replies so I just want to send hugs to you both.

Be strong together. Xxxx 😘

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Thank you so much - we have been together for over 30 years, met when we were teenagers. We love each other so much, and it hurts to see him in such distress. He is a good man, and I will help him through this every step of the way. xxx

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Hi I am so sorry to hear about your poor husband. I too gave myself copd through smoking and only gave up smoking year ago. Fortunately I am still mild.

Now what often happens when you pack the fags in is that you feel worse for a time afterwards. This is because your body is trying to clear the lungs out and you can have flu like symptoms, a bad cough, and other things. These will stop after a while though it can take a few months.

On top of this smoking often masks other health issues or can even cause them. These then come to light when you stop. I found I had a borderline under active thyroid, have developed acid indigestion, and gastro problems. It is also common for copders to end up with a slightly worse lung function too.

Why give it up? Well if you wait until smoking gives you up then you are in real trouble and probably haven't got long left. You are giving yourself every chance of your copd not progressing much as smoking can cause it to accelerate. This means less chance of ending up on oxygen and living a longer healthier life.

There is a great stop smoking site on here call 'Quit'. They will give you lots of info and help to stay stopped. Good luck. x

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I just wanted to wish you all the best and hope your hubby is feeling a bit better . I would do the exercise programme if i was your hubby i think anything that might help is worth a go. Not only that he will meet people who have the same problems and people there who can give advice. Good luck to you both and when i read the electric hob isn't working my first thought was i would google the nearest take away place lol.

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Hi squirrel2821

Im sure you will get reassurance and advice here as we have all gone through the worry and stress after our initial diagnosis . Firstly it’s important to get any infection ( if he has one ) under control even if it means another trip to the GP. He may be on the wrong antibiotics. Perhaps you could take a sputum sample with you?

I was diagnosed Moderate COPD ( emphysema and bronchiectasis) 3 years ago . If you click on my name you will see my previous posts since diagnosis. Since stopping smoking and the support and advice on here I have managed to improve things and I no longer feel hopeless or helpless.

After I stopped smoking I felt like c**p for 3 months and my lungs felt awful as they were getting used to functioning without all the poison!

I think honestly .... not to beat yourself up about the past smoking. Keep away from smoke/ smoking, bonfires etc, people with colds. Don’t sit around too much and get a spirometry test from the respiratory nurse so you know what is the best inhaler/ treatment to use. The best advice from my GP was that if I kept off the cigs and keep as active as possible my lungs should deteriorate at the same pace as anyone else. So I hope once your loved one gets over this flare up and seen the respiratory nurse he will feel better about things. The spirometry test should give you a Fev1 Reading ( you could ask for this) that indicates at what stage COPD is indicated. I started off moderate and am now nearer mild. Good luck and try not to worry too much. C x

Best not to

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I'm sure your partner knows this, but having diabetes no matter which type, it takes you longer to recover and an illness is always worst than those who don't have diabetes. Also some medications do not kick in straight away, some inhalers have to be used for 10 days before they are effective. Read the patient information leaflet that comes with the medication. Your GP needs to send a sputum sample to the laboratory where they will grow the bacteria that is causing the infection and will know which antibiotic that will kill the infection.

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Wow - what a great forum! So much support and good advice from all of you. I feel a little more hopeful and we had a better day today. He has a week off work so I am just trying to feed him good food and let him relax and recharge. I am going to see if I can get him to log in but he's a bit of a 'lone wolf' type! I really think that once he got involved he would find it such a positive and helpful experience. Will definitely get him to look at the quit support section. Again my sincerest thanks to all of you who replied. xx

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Hi please try your best not to let it upset you both. It’s so hard when you give up smoking for your health and things deteriate. What I always say no one ever deserves this and some people can smoke or drink all their lives and never have a lung disease.

I am 59 yr old and been an asthmatic since age of 7. I also smoked but gave up 24yrs ago, I have had a lot of infections and it’s taken it’s toll on the lungs and informed it’s copd from the breathing tests after 3 times in hospital this year. I get out of breath easily and come on vast after being controlled to now giving up full time work after 42yrs which has impacted on my life to adjust. But they said a viral can takes months. I have now been put on a pulmonary rehabilitation for my limitations. I also went to see the consultant Wednesday and he said it’s the years of asthma and my grandad and great grandad both died at 64 with lung disease so hereditary and also said of when years ago I had ulcerative colitis and had a right hemicolectomy operation affects the lungs too and like he said I can’t open you up and repair you. I really hope things improve for your husband but it takes time and will have good and bad days but we do learn to adapt. When I first took worse I just felt like is this it but after we’ve had our bad days of being tearful and bitter and angry we start to think right this is not going to rule my life!! Take care

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Maybe the visit will be more reassuring with ideas to alleviate the symptoms you describe.

Anyway good luck to you both.

Dan

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Welcome to the forum squirrel2821, there are loads of people of here with good advice to help you through this and it helps to know that you are not alone. I know it truly was a lifeline for me. When you read how serious some people are but remain so positive it helps to put things in perspective and somebody always has an answer or a hug to help you on. Your hubby would do well to read the site and he will see just how helpful it can be, so many people behind you can only lift you up when you need it. Irene x

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Welcome squirrel. I'm new to this group and unable to offer any advice but I can recommend these people and you can vent or whatever you need at the time. Wishing you & hubby well x

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Dear Squirrel12821,

So glad others have given you such great advice & support. Your story resonates with me as my husband's background sounds similar to yours & he has been smoking for 60 years (11-71). It is his crutch too. He gave up for 4 months once but nearly went twitchy bonkers and then took up a pipe which he said he'd smoke only twice a day. Ah, but these sessions now seem to meet in the middle ! Anyway, although he's not allowed to smoke in the house or car I am the one currently diagnosed with emphysema ! Nevertheless, he wheezes at night & I wonder what might be lurking round the corner.... What I was going to say was, I would really do the PR - I'm sure it helps (and some yoga breathing exercises can have good results & have been known for centuries.) Also re the bronchitis tell him to take 3x one-a-day garlic pearls (I use Hofel's Odourless) for at least 3 days & then 1 a day for as long as it takes or for prevention. This has saved my life where antibiotics have failed several times. The garlic is antibacterial & I don't know of any reason that a diabetic couldn't take it - although I'm not an expert on that - but it should be used with caution by people on blood thinners like Warfarin as it has an anti-coagulent effect so good versus heart attacks/strokes. One way or another, hope hubby feeling better soon as an unproductive cough is depressing both for the victim and the family!

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Don’t turn down Rehab classes best thing

I ever went to ! Great help!

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squirrel2821

Hi, a tough introduction to the forum but anyway welcome. Whilst your husband is going through tough times at the moment his age puts him in a good category. He can at that age have the opportunity of a lung transplant, lung reduction, lung valves and/or coils and even stem cell treatments. Unfortunately I've been through all the inquiries and none of these is available to me as I also have a cancer. Anyway get an early appointment with his GP and try Carbocisteine tabs for mucus which may well help his cough (But be aware nothing will be an overnight solution) check the net for clement clarke international for a small "huffing" widget that will help bring the mucus up or an acapella machine (Bit like a warbler) each make a small vibration. The GP should be able to give him an antibiotic that will not clash with his other meds which the GP should know.

The Royal Free together with other Hospitals has a good respiratory dept some of which offer "trials". which may be a way forward. Try Royal Brompton Hospital they seem to run more "trials" but your GP must refer him. The valves & coils are available but through 2No separate suppliers but each supplier will have a list of hospitals nationwide that do this treatment.

Do not despair, at his age he has plenty of options but accept that he feels a bit down at this time. Most people on this forum have had problems, you could try the BLF nurses for information they are a knowledgeable bunch of lovely people who are always happy to help.

IKeith

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Thank you Keith - I'm sorry you can't get any of these treatments, will tell my hubby to ask about all of them. You sound like you have a great attitude and I truly believe that is a great aid to battling any illness, thank you for sharing it with me! xx

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Hi I was diagnosed with COPD about four years ago.I too had smoked since I was fourteen (I am now67)

I was given two different inhalers and went to the local hospital for rehabilitation which entailed exercises and info.on inhalers etc.When that finished I joined a local volunteered Breathe easy group.

My marriage has since broken up and I don't have an exercise group near me so am trying to get back into exercising albeit very gentle exercises.I don't know if this helps at all but feel there should be more help for your husband.Good luck to you both.

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Oh squirrel, my heart bleeds for you. I am an ex smoker too, I smoked for 42 years and gave up 22 months ago. Since I gave up I have now got a tight chest and breathlessness. I am in the middle of having tests and the wait is awful. I can't offer you advice because I don't know what is wrong with me, but I can offer support.

I can tell you are so very much in love with your husband, cuddle each other often, kiss like teenagers and be strong for each other, it is also ok to cry.

The people here in this forum are wonderful, you will get so much support, so just come in here and write how you feel, it really helps to know there are others with experience are there for you. I hope today is a good day. x

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Thank you Tansycat for your kind words - I hope you get to the bottom of what's causing your problems soon. xx

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Hello squirrel2821. I know how you are feeling, as do most of us on here, and it is infuriating. You've stopped smoking and doing what you are told and you feel worse, why? As every one is telling you, it takes a while for things to get sorted out, so tell him not to get too upset about it, believe me, panic and anxiety just makes things worse. Tell him to keep up with exercising, that is SO important. Also try sleeping propped up more, that should help with his cough. One very important thing I would recommend is, ask you doctor to refer him for pulmonary rehab, it really does help, it will show him exercises he can do and give him all the information he needs. Please tell him to stop beating himself up about smoking, he didn't start with the intention of getting ill, none of us did, and worrying about it now will just make him depressed.

The main thing for him to do is, carry on as normally as possible, this disease is not a death sentence and he can do so much to slow the symptoms down, the most important, I think, is to keep moving as much as possible in whatever way he can, walking, cycling, swimming, gardening, whatever he enjoys, and tell him to stop worrying about things he can't change. Sending love and hugs. Take care and breath easy

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Thank you Christina - the information and kind words from this board are really helping. I am going to encourage him to go to the rehab and he is doing 10 mins on the exercise bike every day. This is all so new to him, although he has lived in this country since he was 19, he is in many ways still a Parisian... his natural habitat a smokey cafe and his only exercise a short saunter to the Tabac for a packet of fags and a coffee! He has not smoked once since the diagnosis - so I am so proud of him for that as I know that is a hugely difficult thing to do. We are still on holiday in Cornwall so he's getting plenty of sea air, walks and rest. Thank you again xx

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squirrel2821

Hi again,

Tell your hubby that he may not be able to do things as quickly as usual, he willl need to slow down considerable and accept some things he can no longer do at all. Oddly see if the GP can get him into a re-hab programme ASAP they will teach him some exercises which can be done at home.

IKeith

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squirrel2821

I used to be like your husband, almost a carbon copy. I was given inhalers both rescue and preventative but although I shopped smoking, I was little better if not worse. I asked my wife for a puff of her cigarette oh some 25 years or more and it helped my SYMPTOMS, not the cause.. On seeing my doctor he said I should have gone there and he would have given me a high does of steroids which he did starting at 10 and receding. OK for a while and went worse, then I did stop I was very ill - I got all the test, lung function in the cockpit at 80 degree's F - I have Angina, Heart arrhythmia. Thyroid and Kidney disease stage three - All seemed to happen at once - Anyway I kept of the smokes, I kept my weight in check, I exercised (walking) as much as possible - I kept my appointments and asthma nurse helped my inhaler technique - I coughed like you described for years before I was diagnosed.. You never get well as in normal but keeping away from smoking, people with infections, as much mild walking with doctors advice as possible and he should feel much better..Wishing you both all the best, been there and know just how you feel, like most of us do on here....

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Thank you Ern - the giving up and feeling worse really messes with your head but he knows now thanks to all the lovely replies that he needs to keep going to get through to the other side... he has all his appointments next week with respiratory nurses and docs so fingers crossed.. xx

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Stay the course and here is my 2 cents Quitting smoking is paramount no if ands or buts . Yes exercise is very important but I believe what you eat and put into your body is more important than exercise. Try and go online and get familiar with many of the delicious anti oxidant veggies and begin to add to your intake. Also beware of foods that can add inflammation. COPD is an inflammatory disease and you need anti inflammatory intakes to combat it. Everyone has an opinion on this forum and that’s what makes it unique and wonderful. My opinion which is one of many is I believe nutrition is as important and equal to exercise but the most important is QUITTING SMOKERS.

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Thanks RedSox - I have been looking at the Ketogenic diet. My husband suffers from diabetes type 1 and Psoriasis and now this. They all seem to involve an inflammatory process so it would make sense to try. He hasn't touched a ciggy since the diagnosis so that is a real positive. Been feeding him kale with every meal!!

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My husband is an ex-smoker who has COPD. I am the same age [60's] and am ridiculously healthy. It's tough sometimes but you are on this journey together and you can help one another to both have an easier time of it. My top tips would be avoid smokers and explain to friends and family who are smokers that it is really awful for your husband's health. Get rid of scented candles, air fresheners [liquids, plug-ins and sprays] and avoid using aerosols if possible. Every wee change in using products like this will help. Avoid bonfires, smoky barbecues and even people vaping. My husband really enjoyed the pulmonary assessment/rehabilitation and attends an ongoing exercise class as a consequence of this. When he feels well enough we go walking. Little and often is best. Cover up your mouth when the weather is cold. Loads of tips and support on here.

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Thanks Margarine - all really helpful advice.

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Hi

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Hi, I work within a NHS Respiratory/PR team and I am also COPD. (I am not in your area but, I might be able to help with advice).

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