Seeking support/advice from people who are living with COPD please.
My Mum had only just got over the chest infection I mentioned in my last post a week ago after two sputum tests, three lots of antibiotics, two lots of steroids and a trip to A&E as advised by our GP. The hospital said her chest was clear, and her blood tests showed markers from the end of an infection and placed her on a third course of steroids. Now it’s back and I don’t know what to do?!?!
The GP had said she should start her emergency pack once her sputum turned green, but Mum is worried about taking even more antibiotics and steroids!
How many times can one person have chest infections in a year!? It’s almost constant and I am so scared as I have read articles about frequent exacerbations causing scarring/damage to lungs! I don’t know how she is getting infections as we rarely leave the house 🥺 Does she need to see an Immunologist? Has anyone else had this problem please?
Any advice would be greatly appreciated, thank you!
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I'm so sorry that you and your Mum are going through this because of the incompetance of doctors. It is obvious that your Mum has not been given the right antibiotics in high enough doses for a sufficient length of time to knock the infections on the head and that they simply over ride the antibiotics and keep coming back. She may even need a good course of IV antibiotics to sort this out. A&E departments and general respiratory wards are useless in this situation as their job is to patch people up and get them home, not to treat the root cause of the problem.I'm afraid that you have to get tough. If your Mum has a consultant ( which I doubt) you need to ring their secretary, explain how bad it is and get the consultant on to it. Failing that you need to shake the GP out of their complacency. They are not treating her succesfully and are therefore failing in their duty of care towards her. They need to expedite an appointment with a decent consultant now!
Please explain to your Mum that when you need antibiotics you need them and in stronger doses for longer. By refusing to take abs she is simply allowing the bugs to have a party and that is dangerous in her condition. I don't know anything about steroids because I have bronch and don't take them but I am sure that others will give advice.
So - armour on, into battle.
We really do have to be pro active and vociferous in sourcing the right treatment.
My Mum was assigned a Respiratory Consultant this time last year when she was admitted to hospital with COVID pneumonia. However shortly after discharge he signed over her care to our GP 😔
She currently has a telephone appointment with Cardiac Consultant next week, so I will ask if he is able to redirect her care back to the Respiratory Consultant. Although I fear she may need both right now following an episode last Thursday that lasted for over 2 hours. Not sure if it’s all linked?!
Really appreciate your advice, as I feel like I am failing her xx
Obviously she has complex issues. Unfortunately consultants asigned during a hospital stay often do just refer them back to the GP. ( don’t start me on THAT lack of care). It won’t hurt to talk to the cardiac specialist but as they are totally different departments which don’t talk to each other it will take a miracle for that consultant to refer her to a respiratory consultant.The person who should be doing this and quickly, is the GP. I’m sorry but there is no way out of you having to be assertive and pushing for it.
I am really regretting not doing better with my career; wish I was inclined to train as a Doctor, or should have set my sights higher. Hate wishing I could take her private, but just can’t afford it 😔 xx
Agree with previous poster. NOW start taking antibiotics and steroids and do kick your gp up the backside. Your lungs are suffering and constant infection only makes them worse.Unfortunately you do have to kick a**e to get the correct attention. Does your local Trust have a respiratory team
Thanks Lol1944. She has agreed to start the emergency pack tomorrow as she says it’s too late to take steroids at this time of the day - which is better than nothing I guess.
Will have to investigate with regards to a dedicated Respiratory Team, great idea thank you!!! xx
She really should start the antibiotics today even if she feels has to wait until tomorrow to start steroids.There is no reason the medications have to go hand in hand! Especially with the antibiotics the longer she waits the more chance for infection to get hold. You should be contacting gp to advise rescue pack being used. This potentially will require more or longer course of antibiotics.
I am actually doubtful that your mum has had chest infection straight after another in such a short time period. I believe it is far more likely that she hadn’t recovered from previous infection and the break in meds allowed it to take hold again.
Ultimately the gp is the “gatekeeper “ for hospital medics so is really important that you and her speak to gp. Insist to receptionist that you need urgent appointment.
Just don’t know what else they will do. Her chest x-ray was clear, her ECG was fine, they tested her sputum twice and nothing was reported and her blood test showed the tail end of an infection. But like you say, I don’t thinking it is clearing up fully either, and when she coughs it sounds inflamed to me 😔
Feel like I am coming across like a hypochondriac, but the constant coughing is weakening her body and feels my heart with a sense of fear xx
Don’t feel like a hypochondriac. You are advocating on your mums behalf. I have had similar chest infections and they have taken some months to eventually clear I’m afraid.Even once infection has cleared up I have continued to cough and it’s only been through time that it has cleared.
From what you have said she needs a prolonged period of decent antibiotics and possibly steroids. But may have after effects for several months which only time will help.
I believe she needs to be seen at least by gp who should refer to respiratory consultant. I know you say you can’t afford to go private and obviously I don’t know your personal circumstances but it might not be as expensive as you think. I have been referred privately (to nhs consultant and you will need gp referral to go private as well as for nhs). I had initial private consultation and then because I had no health insurance I was transferred back to nhs. Yes it was sneaky but was best way to get seen quickly.
Also despite having been told my X-rays were clear it was only when I saw a decent consultant (nhs) that he pointed out damage to my lungs that radiographer had not mentioned!!
Ps if mum is taking lots of antibiotics make sure she is also taking probiotics and eating live yoghurt. Antibiotics destroys all bacteria including the good bacteria we need in our system!
Finally I know she is taking multivitamins but it might be worth trying vitamin C with zinc tablets. I find those in particular can be quite helpful.
You must explain to your mum that she will probably end up in A&E or a hospital ward very soon if she DOESN'T take the rescue pack immediately (and re-order a new one from GP straight away). It's just par for the course I'm afraid, many many members are in the same boat so this is what we do.
It's no good being 'old school' and 'not liking to take medication. My older sister was like this so she has had a massive stroke. Too too young she's paralysed. (Not lung related, probably high BP & cholesterol).
I hope by now she's on the 2 weeks worth of antibiotics plus the steroids. P
Her sputum samples did not show resistance last time, so she still only has Amoxicillin and Prednisone for a week/five days respectively. She has finally agreed to start these tomorrow! Can’t push her too far as we are currently getting ready to brave the hospital for an echocardiogram and I was worried she wouldn’t go with this cough 🥺
I am so sorry to hear about your Sister, that is devastating. It is definitely hard work getting her help! I had frequently been emailing our GP with updates, but now there is a dedicated portion of their voicemail which says all queries should be sent via an e-consult now and not email - I fear this may be aimed at me 😉
It's a flipping minefield isn't it, worse than having to deal with our own issues so I do sympathise. I cant believe its only 5 days of Amoxy. If I were you I'd get the new scrips ASAP and continue it for another 5 days - 10 days is hardly enough either - I'd better shut up now 🤐
peege, please never shut up 😊 Your words of wisdom are precious, and I am so grateful to you and all of the kind souls that take time to read my concerns and advise xx
I take frequent infections but now not so many.I seen my consultant and professor who put me on a maintenance dose of antibiotics and for over the past year my sputum has been clear, however in spite of lung clearance i still have a high volume of clean sputum BUT at least NOT dirty or infected. may be worth investigating if this could be beneficial for your mum.
I hope she improves and you get some kind of peace of mind.
Thank you tomc. I had mentioned to our GP whether daily steroids was something she may need, but I don’t get the impression her condition is taken as seriously as it should be? Or perhaps I am overreacting, but not sure that I am - everything I have read implies these are not just coughing episodes, but cause permanent damage to her already weakened lungs 🥺
Hope you are keeping safe and well and thank you for the advice xx
I do not agree with steroids being prescribed willy nilly Steroids cause other problems if one takes too many.However, I have thrived on maintenance dose of antibiotics, Although I still have sputum and cough occasionally, I am 98% better for the ABs.
I'm sorry to hear your mam is I'll again , maybe she does need to see a s pp ecialist about her immune system. Please keep us updated on how your mam is doing. You both have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx
She has the Cardiac Consultant on the 23rd, will ask him. But failing that I might just reach out to the Secretary of the previously assigned Respiratory Consultant! I feel like I am always wasting the GP’s time, but I just need some proper help to get on top of this once and for all.
Think they always try the Weaker Anti B,"s 1st. Then give the Stronger version if those don't work. I seem to get a Chest infection.every.Winter n have one at the moment. I doubt it,ll go completely till Spring. Last year it turned to Pneumonia The Cold just brings it on, although I've.barely.been out. Try not to worry. You are being an excellent Daughter looking after your.Mum.so well.
So sorry your mum is ill again. Antibiotics are a better alternative to feeling very ill. You mum obviously has a persistent bug which needs something stronger than Amoxicillin to knock it out. I'm afraid you will have to persist. Best wishes.
Often as part of an exacerbation due to infection,we get inflammation,which can,in my case be as bad_ worse thn infection itself.i get wheezy,produce even more mucous so chest rattly,bronchospasms etc.csn get mucous plugs blocking airway.Steroids should help + a longer course of a/b should stop infection reuniting in additional mucous.
Inflammation itself can be damaging.
Yr not failing mum.its up to her to take meds,and get mucous up.it is hard xxq
Thank you so much Patk1. I have been wondering whether inflammation is the problem. She had an awful barking cough for about 6 weeks accompanied by severe breathlessness. The GP had thought the breathlessness could be her heart, hence the recommendation to go to A&E. The x-ray, blood test and ECG all indicated everything was fine and her chest was clear, but they extended her steroids.
She had only just got rid of the cough for about a week ago but the breathlessness persisted. Now the cough is back and the sputum seems to vary between whitish to thick green. She gets breathless walking only short distances, so I wonder whether I have been doing the wrong thing by making her rest 😔
Out of interest have you ever used a mucolytic to make production thinner and easier to expel please? xx
Yes i take carbocysteine 2tabs x twice a day,sometimes 3x day if need be.i also have hypertronic saline nebulisers too and have aerobika flutter device.i have bronchiectasis+ other lung probs not copd.we r all different bit with bronchiectasis we need antibiotics for at least 14days.i need steroids for 7+ days,it varies.yr doing great supporting mum xxxx
She is very lucky to have you looking after her. I am no expert but if she has the darkest green sputum then that usually heralds the end of the infection. We are all different. If she is still poorly, phone 999 and tell them she is hardly breathing. They will come to you. The antibiotics she has been given don't seem to have worked. Perhaps she needs something stronger. Just call them, they are the best and they are there for your Mum and you.
Thank you so much stamford1234, not quite sure she would agree with you about me 😉
Unfortunately there is no way she would let me call 999, I should have done so just over a week ago when she experienced chest pains - but she refuses to be admitted to hospital in time for Christmas like last year 🥺 Plus when she ended up in hospital again earlier this year they knowingly put her in a ward with a COVID positive patient!
Thankfully she has started her emergency pack this morning and I am also working on getting her to take multivitamins (something she has been reluctant to do as she takes a large number of tablets a day already)! Now just praying they work their magic 🙏🏻
Thanks again and I hope you are keeping safe and well xx
I had no idea about the difficulties you have been faced with while your Mum has been poorly. As somebody else said, often the antibiotics are not strong enough and something else is needed, happened to me once. I think the prednisolone is the one that does the trick. I hope she improves soon. All the very best DO
sorry to hear about your mum and I hope she is taking her meds now. My Respiratory consultant that took me over post Covid in April 2020, was excellent. He said he'd have me due to my bronchiectasis, sorted that out with tests, antibiotics etc and has discharged me 18 months later. I was happy to be discharged, and he said to be re-referred if needed.
I am going to see whether the Cardiac Consultant will make a recommendation back to Respiratory. But failing that my plan is 1) to reach out directly to our locals respiratory team, 2) contact her former Respiratory Consultant’s Secretary to enquire how I can get her back under his care.
Good to know the proper care is available. She has been ill pretty much all year and I am so worried depression is kicking in, it’s hard to keep her spirits up when she never feels like she is getting better 😢
Poor mum, I am not surprised she is on meds again the infection has never cleared. Amoxycillan is pretty useless and 5 days is just not worth taking, she needs at least 14 days of a stronger ab. As everybody has advised, get back onto your gp. I hope your mum gets better soon x
Thank you lzb1! Our GP just keeps prescribing antibiotics, in the last couple of months she has already had two lots of Amoxicillin and then she was given a course of Azithromycin (I think).
When they failed I was told to take her to A&E - because they were no longer able to home treat her. At the hospital, because she had a cough they wanted to make us wait in the COVID isolation section (which I refused to do). All her tests came back ok and she was given a 5 day steroid course with 10mg step downs every two days. The cough went away for about a week and it is now back with a vengeance!
I am struggling to get her to see light at the end of the tunnel right now 🥺
Its a terrible worry for you right now and dreadful that you are in this situation but keep on pushing your gp, your mum needs a mucus sample sending to the lab to see what infection she has, a 14 day decent antobiotic and a course of steroids. Keep your chin up. I had to fight for my mum every time she was ill and its draining x
Hia I take a low dose antibiotic 3 times a week plus’s 10 prednisone.ok I am 72 out lived constant prognosis 8 years so I got osteoarthritis.but that’s hereditary. Works ok .have can oxygen for emergency . Ap on I pad test oxygen level .
Thank you Balloo. I did mention long term steroid treatment to our GP, but I feel like maybe COPD is not their speciality.
Mum already has osteoarthritis, so she lives in constant pain with a hip replacement that has worked its way loose, a required offsetting knee replacement and a wearing of her spine which they have said they can do nothing about. To be constantly breathless and coughing on top of this - she has no real quality of life 😢
Praying 2022 brings her and you all good health xx
I agree with all that’s been said and can only add that my husbands GP told us years ago that sometimes it can take up 4 or 5 different antibiotics before you find the one that works on a particular infection and some infections are penicillin resistant so many AB’s have no affect at all on those ( I think I’m right in saying Doxycycline works on those infections 🤔) A respiratory consultant once put him on a full months course of AB and steroids saying “I’m going to throw everything we’ve got at it “ and that worked. My point is sometimes a lot of medication is needed to clear everything up and if that’s the case your mum shouldn’t worry about taking it . There is a lot to learn about treatment for copd but you’ll get all the advice and support you need here 😊As someone who’s been caring for a copd sufferer for many , many years my advice to you is take the advice you’ve been given on here, stay calm and above all take care of yourself , you are no good to your mum if you make yourself poorly with worry . Take care xxx
Thank you so much 😊 I think it’s taking its toll on both of us now. I have pretty much been in complete lockdown for just under two years trying to keep my parents safe - but I failed! We think my Mum contracted COVID when she went for a chest x-day last December, I just wish I hadn’t prioritised work that day and had gone with her 😔
Good to know about the prolonged treatment of your husband, thank you so much - that gives me some peace of mind!
Please please please don’t think like this. At end of day like most people you have to work! Working is vital to economy and whilst I don’t know what you do it won’t help anyone for you not to work for 2 years and to try to survive off benefits.
Maybe she caught Covid from hospital but they are SO clued up these days that possible not. People who shielded have caught Covid and sometimes just don’t know where from. So put the blame out of your head. Is still things about Covid we don’t understand.
If you had gone to the hospital with your mum she would still have caught covid and you would have too !I do understand how hard it is for you. Like you I have sacrificed seeing friends and family and isolated myself not so much for my sake but someone else’s and the fear of passing it on to them is horrendous. The mental strain on you is hard to cope with but please believe you haven’t failed you’ve done the very best you can and you’re continuing to do so under immense pressure so be kind to yourself !! We are doing ok Geoff is 74 ( diagnosed at 57) he worked until he was 69 and life was quite good but he has deteriorated considerably over the past five years still he enjoys his food, tv , and our dogs and manages to remain incredibly positive despite being housebound 😃 You are on a difficult journey but positively is the key ( albeit it very difficult at times) I’m lucky , I’m a few years younger than Geoff and in good health and I’m just so grateful that I’m able to care for him as best I can - though I often lose patience or do the wrong thing - we’re only human ! Have a good Christmas and look after yourself 😊 xx
Thanks anng18. I am going to call the local Respiratory Team number I found online, and see if they have some support/advise they can offer! I feel like she needs more specialised care!
Oh, I have just seen yards of brilliant ideas for your Mum. Must be a bit overwhelming for you. Nevertheless it is the absolute best advice going for COPD peeps. For what it is worth, Give her a warm hug, maybe she will come round and do look after yourself x
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