Let me introduce myself. My name is Amber (I'm 60) and I've been reading your forum for a while now, but only made a short comment twice. I've learned a lot from all of you, but there is a lot that I don't know yet.
Sorry it will be a bit of a long post.
I was diagnosed with COPD – Emphysema about 3 years ago. They took X-rays after I finally went to the doctors with a “smokers” cough which I had already for quite some years. I smoked for 40 years, but gave it up a few months after I was diagnosed. Apparently I have severe emphysema. The nurse at my doctors told me after the spirometer test which I just could not do without getting a coughing fit. After trying some inhalers (spriva, spiolto, ultibro and onoro) on and off I presently use Duaklir Genuair an have a rescue ventolin inhaler.
This year in June my husband (68), also a smoker all his life, started with a cough which became severe. He went to hospital several times over the months following, ending up on steroids and anti-biotics every time, with the diagnoses of Asthma, Emphysema and Bronchiectasis, a dust and cat allergy. He also stopped smoking. He had light asthma for about 20 years, but didn't take anything for it. We are both not too keen on medicine.
Since his diagnoses it has been a very difficult road. There seems no end to his coughing and now the worst has happened. He has been coughing so violently that he broke a rib (we had the paramedics out 3 time in one day, but they said it was pointless to go to hospital as they wouldn't nor couldn't do anything about it). He had to have morphine as he was in terrible pain. He didn't like taking it and stopped it too quickly resulting in bad withdrawal and his cough returning. So just as he seemed to be healing a bit he broke the rib again the other day. So we are back to square one and on the morphine. He is in despair and in a lot of pain even with the painkillers. At the moment he is on 5mg Oramorph every 2.5 hours. We are trying to gradually reduce this as he went practically cold turkey last time. But we have to make sure he gets enough pain relief. The morphine seems to lessen the coughing a bit, is that normal? I read that some use it for breathing difficulties.
I bought him a rib brace/belt on ebay, which gives at least some support when he coughs. Better than a scarf or towel he used first.
The meds he uses at this moment are, Fostair, Spiriva, has a rescue Ventolin inhaler, takes carbocysteine or NAC. He has a nebuliser (and a portable one) with ventolin nebules, which he uses about 4 times a day at this moment. He was on Trimbow in the beginning, but it seemed to make the coughing even worse.
He coughs up a lot of phlegm.
So I have a few questions for any of you who might know. I obviously haven't gained much joy from the doctors....
How can he get his coughing under control? Is it possible to overdo the breathing exercises to bring phlegm up? Could it be the inhalers? Can he still have an infection even if what he coughs up is clear coloured? What is your routine? His cough gets worse at night, as soon as he lies flat it becomes a battle.
Any suggestions, any ideas, any help is welcome. I'm pretty desperate to say the least....he is past desperate....
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vortex0
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Hi, I can only answer two of your questions. Firstly the oramorph can ease breathlessness for some people and many (including me, though at a different dose) take it long term. I would not be in a hurry to reduce or stop taking it if I was your husband if it is helping. Secondly, it would help quite a lot if he propped up on pillows when in bed. At least 3 would help plus one under his knees to help him stop slipping down if he sleeps on his back.
I do know that when I stopped smoking I coughed phlegm up for months after as my lungs cleared out the rubbish from smoking. Phlegm is an ongoing problem with bronchiectasis and hopefully someone will be along to help with that.
Yes, he often starts propped up, then gets uncomfortable and ends up with just one again and then he wrestles with putting pillows on and off the bed all night.
At the moment it is impossible for him to lie in bed because of his broken rib, which is at his back, not at the front. We have him propped up on an office chair in the bedroom at the moment and another chair in front so he can put his legs on it if he needs. But with the coughing fits it is not possible to lie in bed as he has to swing his legs out every time.
I also bought a beanbag/pillow in case that would give better support in bed, it doesn't slide away like a pillow, but that gets quite warm lying against because of the polystyrene inside. We also have a recliner chair coming this week for in the living room, anything to make him more comfy (A bargain due to black Friday). I'm trying anything.
It is indeed possible that he has extra phlegm because of stopping smoking. Hadn't thought of that.
Sorry that he is having so many problems getting comfortable. I think the recliner will be a good buy and I hope that it helps. Everything feels worse when you can't sleep. Best wishes to you both.
Have they done a sputum and grown a culture to make sure he isn’t dealing with another bacteria..he should also have a CT scan to see what’s going on with his lungs and it’s progress..this should be done yearly..he shouldn’t be laying down to sleep but on an angle 20/30 percent do as to control coughing at night..ask dr for s more powerful cough dupressant..wild flower raw honey helps with coughing
These are the sorts of things your husband should be discussing with his doctor, telephone appointment etc.
Also you may want to contact the BLF helpline; blf.org.uk/
Laying flat can cause problems, raise the upper chest for sleeping, I use two pillows and a neck support and have upper chest on the pillows. Some use a bed wedge either on or under the mattress and other raise the bed at the pillow end.
I get coughing when airways are irritated or airways have narrowed, poor air quality can do this - see my post about air quality posted here....
Thank you for your reply. I am already in the process of changing some cleaning products after reading your post before. I also put a new Hepa filter in my vacuum cleaner, bought new bedding in case there was anything in there that was triggering him, even getting new shower curtains to make sure we keep the mould at bay. I had bought a humidifier to see if that could help as I read it could help to moisten the airways. All it has done up to now is causing a lot of dirty drips on my walls, so maybe it is too powerful or not needed in my bedroom. I just got a little gadget to check the humidity today. Should have gotten this first of course, but my head is spinning by now. I don't get too much sleep myself.
I do air the house by opening windows regularly. The air quality in my house I need to have a look at to see if this can be improved somehow. Not all rooms are heated equally or all the time.
It may be well worthwhile phoning the BLF helpline. I fully understand your need to help your husband but it may be that you are buying a lot of things unnecessarily when there may be simpler ways of helping him. Wishing you well x
If the humidifier is causing dripping wall, that is too much moisture, sounds like you need a dehumidifier! Glad now you have the humidity thermometer.
Also all rooms should be equally heated for even temperature throughout. 20-21 C day time 18C for sleeping.
Just to be clear votex - humifiers don't moisten the airways they moisten the air when the air is too dry in the home through central heating etc.
Dehumidifiers take the moisture out of the air when the air is too moist, if your air is too moist it will grow mould, definitely not helpful to breathing and lungs.
During summer, the indoor air relative humidity follows the outdoor humidity and typically ranges between 50% - 70%. The ideal range for indoor humidity during summer time is about 30% - 50%.
Indoor relative humidity must be kept under a level where it starts to form microbes in the building or in surfaces. The humidity should not be over 60% constantly.
This sounds maybe too simple to be true but it’s a great tip I learned here and which has served me well: Fisherman’s Friends. For me it has to be the original ones in the white packet. But they really do help ease the coughing, and help all round. Also if any of your bedding, cushions etc have feathers in that could cause problems with breathing and coughing. I hope you can find some solutions. Sending good wishes to you and your husband.
Yes I’d agree. The fisherman’s friends helped me tremendously. Upon quitting smoking the horrid cough came on after a few days and lasted for months!!!
Yes I have removed all feather cushions and replaced everything with hypoallergenic stuff a few weeks ago. My brain is doing overtime to cover all things that might give him problems and find the solutions.
I will keep the coughsweets in mind.
At this moment he is at his wits end. Every time he coughs the rib feels like breaking again and again. I'm having a telephone call from our GP tomorrow and I hope he can give me some hope. I wonder if he could be put in a coma until his rib has healed. It may sound extreme but things are that bad.
Oh I am so sorry to hear about your poor husband. That cough must be so debilitating & exhausting. I can talk about Morphine & Oramorph a bit as at present in hospital with kidney problems causing awful pain and have needed Oramorph. I also have Bronchiectasis & as a ex nurse know Oramorph is good for folks with Emphysema. My dear friend took it in small doses regularly & it really helped her. But this cough... I don't know if Codeine Linctus would be helpful. With Bronchectsis it is so important to get sputum up. I am on Carbosteine tablets to thin it & make it less sticky. B'ect patients should be refered to Specialist Consultant as it is treated differently to other Respiratory conditions. When we have infections we need far longer courses of antibiotics than normal folks. There are also B'ect Nurses at my hospital who are brilliant & even sorted out a free nebulizer machine in case of severe sticky gunge. I am not on inhalers so it is just saline in the nebulizer. As one of our members says you sometimes need to push for this Specialist help.
Sadly my husband is allergic to codeine and meds with codeine in it.
We have just got off the phone with our GP and he will be giving him slow release Tramadol. when the pain gets too severe we can give him extra oramorph.
I hope it will help because he needs something to keep him sane.
Tramadol is good analgesic. ( painkiller) & Oramorph get a into the system quickly so with the Tramadol releasing slowly good combination hope he gets some relief soon x
Well taht is something I would like him to look into. I changed mine several times and I also told him to get off the Trimbow before. After reading mixed reactions to Fostair I might get him to change it as soon as this crisis is over. Maybe we should do it already, but at the moment there is so much going on that I try not to overwhelm him with too much change or info he needs to think about, but we will get to it.
Why wait .......if the coughing is that bad you should be on the phone to the surgery.......my records show a list of drug reactions ,. But each one is to Tiotropium . Not to anything else . I went from a constant cough to sounding like a dog barking......all inhalers had the one thing in common..
.You know the inhalers used up to now ......Look up the ingredients on the And compare .
You will quickly find a pattern........if it is a drug reaction.
..My chest consultant offered me Trilogy , but we agreed I stay on Symbicort unless I felt it wasn't working .
But if I changed and didn't like it .....go back on Symbicort.
Ok , You are right. I shouldn't wait. I can at least do the homework before I ask my husband to try it out. At the moment his head is spinning and he has a hard time concentrating on all the stuff I tell him.
No, please go on as much as you like . It is his head that is spinning not mine. I came here for help and I appreciate every comment, every suggestion. Every idea big or small. Also your own stories and experiences can greatly help me in this situation.
On the 5th we have been married 34 years and I would like him to be around a bit longer, so I'm open to anything.
I had the same problem, coughing for hours, called an ambulance, told nothing can be done for a cough. I ended up going to A&E where after a while one of the doctors gave me CO- CODAMOL tablets. After about 15 mins my coughing stopped. So I use them whenever I get a coughing fit. I take the over the counter ones 8/50 but you can get stronger ones from your GP. Also I take cough sweets, Halls Mentholyptus help and cough syrup. Try different things to suit and he may be able to control it better. Sometimes better ventilation helps i.e an electric fan or open a window. I know , it's a horrible thing to have, hope he improves soon.
Got the Fisherman's friends sweets today, so we'll have to see. He hasn't taken them yet, but at least they are there when he wants to give it a go.
He has a little handheld fan which he so now and then uses. Apparently that can help his breathing according one of the doctors at the hospital before.
Hi Vortex0 and welcome to the site.So sorry to hear of the problems both you and your husband are facing I cant add anything to what the people here have advised, other than speaking with the BNFL people who can perhaps help. I wish you all the best and hope hubby gets some relief soon x
I really feel for you both. I went through a very similar thing last winter from Mid January thru to Early April. I was told by my doctor that I possibly had COPD. I was sent for an X-ray and it came back clear which delighted me. But I have never felt so poorly in my life.
I coughed and coughed, hurting my ribs in the process, (not broken, just v. painful and bruised). I propped up in bed for 66 nights to try and sleep because as soon as I lay down I coughed. I was in a desperate state. I’d been put on one week of steroids by my British Doctor which had no effect. My coughing was mostly dry but what phlegm I did have was mostly clear. I began to be short of breath and gasped quiet often when I couldn’t get air. I carried an oximeter at all times and was lucky if I got a reading of 92. (It was mostly lower).
I had a sinus flare up at the same time and so I consulted a Spanish Doctor. (I went to Spain for 6 weeks to try and get some relief as my British Doctor said the sunny sea climate would help me). The Spanish Doc gave me a steroid shot in my bum as he thought perhaps it was post nasal drip causing my coughing. He also did a full blood count which showed I had a high monocyte reading. (This meant nothing to me at the time). He X-rayed my sinuses and saw some noticeable blockage. The steroid shot stopped the cough for 2 days and my ribs immediately had chance to begin to heal.
I found that drinking hot tea whenever I began a bad coughing bout eased it. I also slept with a shot of whisky by my bed and when the coughing started I just had a small sip of it to wet the back of my throat....that helped a lot.
I had previously given up smoking but I never missed them.... I regret ever having the habit now!
However, having returned to the UK I later spoke with my orthopedic surgeon during our first Lockdown and he informed me that all the symptoms I described to him, (I’d kept a Diary of Daily symptoms throughout), showed that I’d had Covid-19. He’d had to stop operating during the Springtime and had gone to help out on the Covid ward of a large hospital and he’d seen all the symptoms which Covid patients displayed and said that what I was describing was exactly the same .....his exact words. I began to think then. My high Monocytes count, (part of white blood cells), meant I was fighting a virus, not COPD as my GP had suggested. The emotional state which I’d been in...I’d cry for no reason and totally unlike me. I had a constant metallic taste in my mouth and no sense of smell...still haven’t? The SOB which I’d never had before.
I’d left the UK at the end of January and no one suspected Covid was in the UK at that time. (It was a China Virus). I’d taken a train to Leeds, stayed the night in Leeds, eaten in Leeds city centre, taken an airport (public) bus, caught a plane from Leeds Bradford Airport and flew to Malaga Airport, Spain when strangely enough the Wuhan Football Team had just passed through 3 days earlier. I’d also just had surgery on my foot in Mid January and been under general anesthesia, (well known to lower ones immune system), as well as contracting a serious cough/cold immediately after the foot operation and prior to leaving for Spain. In Spain I became even worse. It appeared to add up that I’d become Covid infected somewhere during this 2 day travel period, as well as on top of a virus I was already suffering from. We now know that Covid was around long before we were all aware of it.
The bottom line and my point of reflecting upon this, is that when we are ill our immune system is lowered. Our bodies are vulnerable to viruses. Many medications reduce ones immune system. It could be that many of us on here have had Covid, perhaps unknowingly, and we feel worse than others who aren’t so vulnerable and who aren’t taking so many medications, the so called the asymptotic ones. There are many outcomes for different people since none of us have the exact same makeup. There is no size fits all. Then there is the ‘Long Covid’ effect which I’ve been left with to some extent, but fortunately not as bad as many others have suffered with. I now get EIB (Exercise Induced Broncho-constriction). If I over exercise whilst breathing in cold air through my mouth I begin to cough 15-20 mins after stopping the exercise and for up to 40 mins at a time. I put the kettle on and make a hot cup of tea and the cough settles almost immediately. I also carry a hip flask in my pocket with neat whisky in just in case I have a coughing bout when out and about. It helps enormously.
I caught Covid again in late September. My husband went for a test so I joined him as I just felt a little congested. We both tested Positive. Husband had 3 days of been lethargic and body aches and a temperature for just one day only. Apart from the nasal congestion I had no other symptoms. No doubt my T Cells knew how to deal with this thing and sent antibodies to fight it.
Sorry for the long post Vortex0 but have faith that your husband will improve with care and the attention you are giving him. He is indeed a lucky man to have you by his side. This blog is a lifesaver for those who are desperate as I was in those dark days of earlier this year. Don’t discount the fact that he may have contracted a small dose of Covid too. It’s in the air and all around us. We really can’t avoid it all together.
I'm happy with your long post. Often there can be bits of info in between that can be of great value. I did say to my hubby that it could be possible that they just still hadn'tgotten to the bottom of his previous infection and although what he coughs up is clear it doesn't especially mean he hasn't got one. He has a rescue pack with anti-biotics and I told him to start taking them just in case.
Sad thing is that both of us are no lovers of meds( well I suppose no one is really). We take vitamins and supplements before touching meds.
Same here, we don’t like taking meds if we can help it. We’re big on a healthy diet and also vitamin supplements. We believe that one can be so over medicated that it does one harm.
Hi Vortex. I totally sympathise with your husband’s situation. I broke 6 ribs during a particularly bad period both at the front, back and side. I also have bronchiectasis and was requiring multiple daily nebs to clear my lungs which resulted in re-fractures. I was prescribed tramadol and neproxin for the pain which I juggled along with good old paracetamol. Spacing out the pain medication and taking it as regular as clockwork helps, but it was a slow process. I took tramadol and an hour later had paracetamol, then an hour after that I had neproxin so that at any one time I had pain relief on board, lots of patience is necessary and taking care to not overdo things. Sitting or being propped up in bed certainly helps, plenty of pillows for support wherever needed, especially under the knees which also helps to alleviate pressure off the heels. Lots of warm drinks to keep expectorations loose making coughing hopefully less harsh. I didn’t use any other support apart from a large towel to support my ribs during coughing as I wanted to keep my lungs expanding as much as I possibly could. I wish him a very speedy recovery.
My god, that sound even worse than my husband. How long did it take you to recover?
by the way, we found that the symptoms my husband has are those of a slipped rib causing nervepains. When we told the GP over the phone he didn't say we were right nor wrong, but was willing, up to a point, to prescribe the slow release or extended Tramadol (which they didn't have yet at the chemist, so waiting till tomorrow) and send off for a CT scan request.
We'll see. We did have some standard Tramadol from a friend and see if we can replace the morphine with this in a careful way. Just for tonight to see if he can go without painrelief a bit longer and giving us 4 hours in between instead of 2. Me and my youngest daughter are turning into zombies. First my eldest daughter was helping as well, but she had to get back to work.
I’m so sorry your husband is having such an awful time coughing . I find the only thing that helps when I have coughing fits is mixing lemon juice with apple cider vinegar and a spoonful of honey preferably Manuka in hot water and sipping often. For me it does eventually ease the cough thankfully. Also a hand held fan really helps too aimed around the nose and cheeks.
Ah, I also bought the apple cider vinegar already the other day for him to try to reduce the pleghm. I have been reading on this forum a lot over the last few weeks and already picked up many good ideas from all of you. At least I have lots of options and ideas to try out thanks to you all. It gives me some hope and the amount of support from this forum is wonderful. It makes you feel less alone.
We all know the dreaded coughing but your poor husband is having an awful time poor guy and you are too as you suffer hearing and seeing him struggle. Wishing you both a peaceful night. 🙏
Aww poor chap, you must all be exhausted. Spacing out the pain relief really does help. I had a displaced fracture on my right side which was by far the worst part (I’ve still got a tender lump and it’s 5 years ago) it does take a while unfortunately, but with regular medications, it does get easier. Lots of gentle movements and some mobilising and I’m sure he will get through it
I told him about you and told him to count his blessings. I don't think he felt very blessed at this very minute. We will see how we get on in the coming days with the meds.
It is still pretty hard going, although he was able to sleep a little bit more last night and for the first time in days in bed instead of being propped up in his officechair.
The extended Tramadol twice a day and in between twice a day two paracetamol kind of keeps the pain under control, although not totally. He feels at least a lot better now he isn't on morphine anymore. It makes him go gaga in his head and he hates losing control.
By now we have figured out he has a slipped rib which somehow presses on a nerve or nerves, that is why the pain is so off the scale.
Everytime he has a coughing fit we put first a cold pack on his back and half an hour later a warm pack to keep any swelling down.
The doctor has agreed reluctantly to an MTI scan although I have no idea how my husband could lie on his back or front in that tube with the added risk of getting a coughing fit while in there. I don't understand why he can't get a ultra sound scan, but we cross that bridge when we get there.
We wondered if he could have a Corticosteroid injection like when you have a frozen shoulder (which I have at the moment, but have put treatment on hold till my husband get sorted), but the GP wasn't pleased about us "diagnosing" ourselves. He became quite ratty with us, so we didn't want to push our luck.
I personally would have been dead by now if I hadn't, so yeah we often do our own research and doctors don't really like it when you step on their turf.
Anyway we do everything we can to make the situation as good as it can be.
I am also already looking into the inhalers to see if he has to change them.
Thank you for asking. The support on this forum is very much appreciated.
I really do feel for him, it’s utter misery. Keep going with that pain relief so that he has something on board at all times keeping to the required amount and the pain will settle. It’s tough when your going through it, but it does stop. Gently does it
I should have updated this thread anyway, but with Xmas etc on top of it all I didn't. My bad.
My husband is doing a lot better now. It's been an uphill struggle. After 2 weeks he started to improve and then got back to square one after another bad coughing fit.
Getting desperate doesn't even describe the situation.
As things could not get worse anyway I gave my husband the anti-biotics from his rescue pack (not the prednisolone, as the steroids are for calming down inflamation, not fighting infection as far as I know) and told him to stop the Spiriva. He was already taking Fostair.
Even though the paramedics told him every time his lungs were clear of infection when this happend with his rib I wondered if there might just still be some left. Maybe they missed a sound.
And low and behold....after a few days his cough started to go.
I'm obviously not a doctor, and a lot of people might disagree with self diagnosing, but when my husband was discharged from the hospital it said on his paperwork that he had light Asthma, light Emphysema and severe Bronchiectasis, a dust and cat allergy. And obviously got the meds for all of that and he was trying his best to cough up pleghm all these months.
Then when we were in the middle of this battle we got a letter from the specialist which read that my husband had light Asthma, severe Emphysema and light Bronchiectasis.
Well that changes the situation a bit don't you think. How on earth did that get messed up!
Anyway as Spiriva is for COPD and only approved a few years back for Asthma and Fostair is also for both I didn't see the point for him to have both. I thought he was given both because of the Bronchiectasis, for which there are no inhalers anyway if I understand things correctly now. Plus he could always start taking it again as things really could not get worse.
So, my hubby didn't cough anymore after a week and finally he could start healing. I haven't even contacted our GP. I really can't be asked. He slipped a rib because his cough wasn't treated properly! (Oh and just in case anyone would ever get this. It is hard to see on an X-ray. Even a fractured rib can be easily missed that way, as we were later told, so don't be fobbed off by GPs who think they are experts on everything). I could kill the lot of them. This could have been avoided.
Sleeping has been a big problem and we tried everything under the sun and nothing really solved it very well, but bit by bit things are getting better and last night he managed actually to sleep flat on his back and a bit on his side for a few hours.
He still has some pain, but a lot less and weaned himself off the Tramadol and only uses Paracetamol 3 times a day now and he is not taking anything else, no Carbocysteine, no acid reflux meds, no nebuliser, not even needed his Ventolin. Just Fostair twice a day.
So there you go.
I would say to anyone with health issues listen to your gut. The doctors might know a lot, but they don't know your body. Only you do. You know when something feels off. Don't let them dismiss you.
Happy New Year everyone. I hope it will be a healthy one.
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