Husband's COPD getting much worse - n... - British Lung Foun...

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Husband's COPD getting much worse - needs help

Linmac66
Linmac66

I apologise in advance for the length of this post but I am desperate and lost. Any advice is welcome.

My husband has severe COPD and I am really concerned about him. He is 52 and was diagnosed several years ago. He still smokes around one cigarette’s worth of tobacco a day but is increasingly struggling to inhale.

He was supposed to have his annual assessment with the COPD clinic March last year but it was cancelled due to COVID.

In the year before this he had declined markedly so I was worried that his assessment was cancelled – I had hoped a change in his medication could have helped him.

In the year since then he has declined even more – and quite rapidly. To explain his current condition:

•He is breathless all the time – even when resting

•Usually his breathing is more like gasping breaths

•His voice is very weak

•He is tired all the time

•He spends around 16 hours in bed each 24 hour cycle

•He wakes frequently and has to sit up and use his inhaler. It takes him about 15 minutes to catch his breath enough to be able to sleep again.

•He has a headache most of the time

•He has bouts of sneezing that can last for about 20 seconds

•He has very little appetite and has lost several stones in weight. His BMI is 14. He sees a dietician and is prescribed Fresubin, a high energy, oral nutritional supplement drink, which he takes regularly. His skin is hanging off his bones where he has always been of a muscular build (he was a bricklayer)

•He is extremely irritable and gets confused or mixed up easily

I had to call 999 one time when he couldn’t breath at all. By the time the ambulance arrived he had managed to get control of his breathing but the paramedics still wanted to take him to hospital because of the way he was breathing. They were shocked when I told them that was his normal breathing (over the last couple of years) and said he had to see the doctor next day if he didn’t want to go to hospital. Next day the doctor prescribed him a short course of steroids and a course of antibiotics. He was more like himself while taking them but returned to his breathless state when they were finished.

He currently has a blue inhaler for general use and a Relvar Ellipta inhaler (92/22µg) for use once a day. He uses both as prescribed but is running out of his blue inhaler too quickly.

He eventually had his annual assessment with the COPD clinic on 23 March 2021. It was conducted by phone and lasted less than a minute. When he told the nurse that he had gotten a lot worse and was running out of his inhaler too quickly she booked him an appointment with the doctor so they could change his prescription.

Our home circumstances:

He lives in central Scotland with myself and our 4 children, three of whom are dependents and 2 of whom have support needs (Down’s syndrome and Muscular Dystrophy – FSHD)

I am very concerned that he is not getting the care that he could be getting and don’t know what to do about it. He is very proud and would be embarrassed to say how bad he is. When I try to talk to him about it he becomes annoyed with me and when he becomes annoyed he struggles to breathe. I believe that if the health care professionals had a face-to-face appointment with a spirometry test they would realise how bad he is. He has no flare-up plan or rescue pack

51 Replies

Welcome to the forum Linmac, I’m so sorry to hear about your husbands health problems. He really needs to be seen face to face and I’m afraid it falls upon you to insist that happens. Your husband needs help so please with his doctor and don’t take no for an answer.

You could also try phoning the BLF helpline and speak to a nurse. They’re very helpful. I can’t remember the number so maybe someone else can help with that.

Please stay in touch. Xxx

Linmac66
Linmac66 in reply to sassy59

Thank you sassy59. I think I might try the BLF helpline first - hopefully they can advise me on what to say to doctor. I don't know if doctor would even speak to me without my husband's permission.

sassy59
sassy59 in reply to Linmac66

Good idea. Are you registered as your husbands carer. If so, the doctor should speak to you. I’m my husband carer and have no problems. Good luck to you. Xxxx

Linmac66
Linmac66 in reply to sassy59

No I'm not. He's never been told he needed a carer. I will look into how I can be registered as his carer.

garshe
garshe in reply to Linmac66

Apply for attendance allowance for your husband. You then will be accepted as his carer. Xx good luck xxSheila 💕💐

So sorry to hear this. The only advice I can give is that you get him into hospital. He needs attention and quickly to avoid further deterioration.

Linmac66
Linmac66 in reply to Lol1944

Thank you Lol1944. I agree but I don't know how to get him admitted to hospital - because he's been like this for a while if that makes sense. I think if he had face-to-face then hospital could be a course of action they'd follow.

Dear Linbmac66 - so sorry you and your husband are experiencing these difficulties.Please do contact Scotland's 111 service for further advice.

Here are some details and the link for you to read further;

nhs24.scot/111/introduction...

If you phone your GP ask for community matron attendance for your husbands care at home, explain the situation, what you have said here.

~~~~~~~~~~~~~

For patients who do not have any coronavirus symptoms, they should continue to telephone their GP when open and not call NHS 24.

In the out of hours period, when displaying symptoms other than coronavirus, you should only call 111 if you need urgent assessment and cannot wait until your GP is open.

Callers to the 111 helpline will be assessed and, if necessary, transferred to a local community hub staffed by clinicians from across the healthcare system to ensure patients get the best possible advice at the right time.

gov.scot/news/new-nhs-24-ar....

~~~~~~~~~~~~~

Hope you will get the help and support you need.

Very best wishes BK

Linmac66
Linmac66 in reply to Bkin

Thank you Bkin. I didn't know I could call 111 unless it is an emergency and out of practise hours. I could try phoning his practise to speak to the community matron nurse - if they have one. They would likely be more helpful in general than the doctor.

Bkin
Bkin in reply to Linmac66

Best wishes Linmac - let us know how you get on.

There are two ways to get medical attention from your local hospital. One is to ring for an ambulance and the ambulance men will immediately transfer him to the hospital second way is to take him to casualty dept. No medic worth his salt will refuse to give your husband treatment. From your description he needs a hospital stay in order to receive the correct care. To be honest nothing can be worse for him than spending most of his day in bed. I speak as one who many times has been driven to hospital in my pj's gasping for breath.

Linmac66
Linmac66 in reply to Lol1944

I would happily follow your advice but I don't think he would be so happy about it. He hates going into hospital and has had some bad experiences with poor care. He has also had exceptional care at other times but that doesn't seem to stick so well. If a doctor or nurse said he had to go to hospital he would accept it but if I instigated it he would be raging with me and would possibly refuse. It's comforting to know that I am not being neurotic in worrying about him though. I was dreading that people might say "he's got COPD - what do you expect" or such. So thank you!

Sorry to hear this. Attention is imperative. Generally most people with copd die with it and not from it. With correct care your husband can improve from his current situation. Not sure what you can do if a patient refuses to accept treatment.

Damon1864
Damon1864Volunteer

Welcome to the site, so sorry to hear about the problems you are having, register at your GPs as your husband's carer at least then you will be able to talk to his GP. There are lots of people on here who can give you advice. Hope this helps, and please keep posting we are all here to support each other. Hope you all have a good day and please stay safe😊 Bernadette and Jack 🐕 xxxxxx

If your Husband improved on the steriods and antibiotics he may have an underlying infection that came back after the the course ended, he may need a longer course or a different antibiotic. If he does have an infection it will make his breathing much worse. If you don’t get a good response from your surgery call 111, if from that call he is advised to go to A&E he will get all the proper checks on oxygen levels, possibly blood tests to check for infection and blodd gas levels , changes in the blood gases can cause confusion and fatigue also a Dr will listen to his chest. He may not need to be admitted, the A&E doctors can prescribe rescue meds etc. I hope he gets some help soon. xx

So sorry to hear all this Linmac it must be so distressing for you dealing with it all in these difficult times . When my husband deteriorated ( at the time he had a salbutamol inhaler and Gp prescribing antibiotics albeit reluctantly during flare ups nothing more ) I was in the same position as you so my daughter rang the Gp and kicked up a bit of a fuss , his reply was that we needed to try several antibiotics before finding one that works . A week later when he was no better I went to see the Gp myself and politely but firmly insisted he needed more attention than he was being given and he conceded , referred him to a consultant and got the relevant tests done and a treatment plan put in place . Unfortunately, as Sassy has said , you need to push for the tests and appropriate treatment . I’m retired so not a registered carer but have never had a problem getting to speak with hubby’s GP My husband is just like yours , absolutely hates hospitals but I was told if you call an ambulance, the paramedics are very well trained , will do a thorough assessment and will not admit anyone to hospital if it’s not absolutely necessary so don’t be afraid to call them if necessary it will put your mind at rest and if he needs to go he must go ! . I realise how scary this is , I’ve been in this position , it’s awful but my husband was taken to hospital (in fact they saved his life ) and I felt so much better when he went in because I knew I wasn’t equipped to deal with it myself . He’s fine now and I’ve learned two things over the past 16 years - 1 be firm and insist on the right treatment and 2 don’t be afraid of hospitals -no one wants to go in but sometimes it’s the only option. Good luck xx

Very well said

Thank you , I feel like I ramble at times 😂 Everyone on here so want to help others by sharing experiences but I find it’s not always easy to condense them all

Well said. Xxxx

Hi Linmac66All wonderful advice given above

May I suggest one other angle.....

(Apologies if I sound blunt, but I work within community health care & see similar situations all the time.)

Be straight & direct with hubby that you are calling for paramedics , let them do all their obs.

If hubby still refuses medical attention from hospital & all other persuasion & options are exhausted. Ask paramedics if they can refer to ‘ Hospial at Home team

These teams include a mixture of professionals

Whom will visit your home . They will follow all Covid protocol, so do not be frightened or overwhelmed .

Remember it is Easter Weekend , do it today!!

My husband has had hospital at home twice , it was brilliant ! Once when he was very poorly but not admitted to hospital and once after being discharged having spent one week in hospital. The nurses came twice per week for six weeks and on the 2nd occasion pulmonary physiotherapists , who did a brilliant job clearing his lungs came twice per week as well. It was so reassuring for me to know I wasn’t dealing with things alone . I even had everyone’s phone numbers if I needed advice in between visits 😃

Wonderful to hear of your positive experience, it truly is a wonderful service x

Izb1
Izb1 in reply to Maggie_Mae

I have never heard of this but it sounds like a wonderful service x

I think the most important is to stop smoking. Can he walk? I try to drink herbal teas only and vitamines.

Linmac66
Linmac66 in reply to Sandrute2

He has tried to stop - used champix (think that’s it’s name) and I thought he had but soon realised he was still having the odd puff in private. He can still walk but has to stop and bend over to catch his breath after a couple of steps.

I hope you have managed to get some help , sending my best wishes .

Wishing you and your family the very best. There has to be something that can be prescribed to help your husband as the steroids did. I have read that some patients are on a daily dose of a lesser strength so maybe some thing like that could be considered by the Hospital doctors. Your GP doesn’t sound very helpful to be honest. I have severe COPD and like most of us have a rescue pack at home plus along with the inhalers I have Oramorph to take a very small amount up to 4 times daily. There is help for him out there and different medications to try. Please let us know how you get on? X

I am sitting here bubbling after all your messages of support, advice and experiences. It is such a relief to talk about it and realise there are options. He had appointment with doctor today (by phone) to discuss getting more inhalers so I wanted to see how that went before I took action. (Then other demands took over.) He actually got out of breath while he was on phone to doc and doctor said there was no other help he could get except more inhalers. He told doctor about my concerns with him waking out of breath and doc said I’ve to see if he wakes because he’s stopped breathing. He thinks it’s reflux that is waking him! He’ll call back next week to find out if he stops breathing then might refer him on for further tests.

Thank you so much for your support everyone! I really do appreciate it xxxx

Izb1
Izb1 in reply to Linmac66

It could very well be sleep apnoea, you said he wakes up with a headache, my friends hubby had this and he went on a bipap machine and was so much better, everything improved. Your hubby needs to be under a consultant who could treat him properly. I do hope you get things sorted, its hard managing when you dont get the right support x

"No other help except inhalers" Never heard such rubbish. He needs referring to a respiratory specialist. I am very severe copd and have Spiriva respimat

Revlar184/22

Ventolin

Carbocisteine

Furosemide

Azithromycin

Always prednisone and antibiotics as rescue pack in the cupboard.

The idea that the gp only" might "refer him will not do. Seems you are going to have to insist on a referral.

Linmac66
Linmac66 in reply to Lol1944

He does have Relvar Ellipta 92/22 and blue inhaler but that’s it. No rescue pack.

Does your nhs trust have a respiratory team?

Yes there is a respiratory clinic but he is only seen by gp and COPD nurse.

I'm a bit late to this conversation so just want to send lots of good wishes to you and your husband.

Is the Fresubin working? I was on 1 x 200ml per day but this was upped to 2 x 200ml of Ensure two cal plus 3 x 40ml Calogen and now I’m steadily putting on weight. Has he had an oxygen assessment to see if ambulatory oxygen is needed

Linmac66
Linmac66 in reply to Biker88

He is definitely not gaining any weight. He’s so thin it’s hard to look at him.

Linmac66
Linmac66 in reply to Linmac66

I buy him cakes, biscuits and any other high calorie foods I can think of 🙂

Biker88
Biker88 in reply to Linmac66

Sounds like my diet, I can’t eat a normal size meal, so tend to have several small ones. I wasn’t putting on weight with a single Fresubin a day but once I the dose was upped to 2 a day and the Calogen the weight started to increase. I’m now at the bottom end of the O/K BMI for my age and height and hope to go up a bit more before the dietitian reviews the diet. Has your dietitian mentioned adding milk powder to whole milk milkshakes and other foodstuffs also cream in mashed potato.

Has your husband had a full medical check up in the past couple of years?

We had a shock recently when we found that my husband's breathlessness was due to fluid on the lungs and the reason for that is that he has heart failure and needs a new heart valve! This was an incidental finding when he had an MRI scan to see if he might have prostate cancer. He was 'fit and well' apart from a urine infection and everything else has led on from the blood test the doctor had him do for that.

I'm trying to say that there are other things that can cause breathlessness and these need to be ruled out. The deterioration in your husband's health could be due to other issues, not just COPD. I expect the paramedics who saw him would have done an ECG but that on its own may not be enough to detect some conditions.

He really does sound like he needs a complete MOT (as we call it!).

Then sack your doctor! If that is too extreme, try putting all your concerns in writing to them, as you have done to us. You are very articulate and what you have written here makes it very clear that your husband has not been well looked after by the medical profession. If you send it to your GP in writing, it may shock them into action.

It should be possible to email a letter to your GP as an attachment and it would then be easy to copy it to someone else eg the Practice Manager and/or, perhaps, to the Adult Social Care team.

I think we have to remember that GPs are only human. They are presented with some information and they act on it. They are currently working without always seeing their patients face to face and in that climate, I think someone could be forgiven for not quite 'getting it'. I would have thought that one look at your husband would be enough for the GP to realise that he was underestimating the concerns, but if they can only go on what is said in a phone call, they may not be getting the whole picture. A letter gives them something to refer back to and reflect on.

As someone else has said, your husband's chest infection may not have completely cleared and he may need a further course of antibiotics and/or steroids. If he coughs up phlegm, can you get him to do it into a sample pot and get it to the GP to be tested? If there is something persistent there, it might show up in a test. Sometimes, you can have an infection that doesn't show from the sputum test (as I know from my own experience) but often, it will show that a different antibiotic is required.

Stick to your guns! You are right to be concerned.

Good luck! Let us know how things go on. xx Moy

Linmac66
Linmac66 in reply to MoyB

Thank you MoyB. I hope your husband recovered ok. He has not had any face to face appointments for at least a year and none other than short phone call with COPD clinic nurse for 2 years. I had actually thought it would be better to send my concerns by email rather than phoning - health care professionals often don’t give you the chance to finish a sentence due to extreme demands on their time. I can’t really put the blame at their door. I think my husband should have pressed for a more in depth assessment but it just isn’t in his nature. I can’t help feeling that I should email the COPD clinic nurse rather than his doctor. Or perhaps both. Thank you for your advice.

Patk1
Patk1 in reply to Linmac66

With hubby breathing so bad it prob b beta if u explained and took calls xx

MoyB
MoyB in reply to Linmac66

My husband is sorted, thanks. He's on medication and is waiting for a scan to see if he can have a heart valve replaced by keyhole or if he needs more than just the valve in which case they will 'unzip' him! He's being monitored and - finally - doing as he is told. 😂

I hope things are soon sorted out for your poor husband. Your idea to email the GP and the COPD nurse sounds like a good plan. 👍I think it is a good thing to copy such an email to at least one other person or even two, if appropriate. As long as each is aware that the other has a copy it is less likely to be ignored.

Have a good weekend. 👍😊Xx Moy

So sorry to hear this..As an IPF sufferer i’m not sure if he should be on oxygen or not but obviously ask the question.

Have you tried a humidifier?

Definitely phone your Doc and demand a face to face appointment and ask the doc if it were his/ her loved one would they accept his current medical pathway?

As for the fags, you need to hide them now!

Stay safe xx

Linmac66
Linmac66 in reply to Mrbojangles

Thank you MrBojangles. Love your name btw! I would hope if he had full assessment they would check his oxygen levels. He doesn’t have blue fingers (his lips have always had blue tinge) or any other symptoms of lack of oxygen other than waking with a headache every day. I think hiding his fags would possibly be suicidal for me! 🙂

Hi Linmac66, sorry to hear how things are with you. I have just experienced a similar situation with my daughters husband. She was her husbands carer and wife of course. You are entitled to talk to the doctor about your husband as his health impacts on yourself and other family. As his next of kin you can ask for details about his health and treatment unless he has specified not to tell you. New regulations do make it harder to help your nearest and dearest at these times but be insistent then the GP can at least get your husbands consent for you to conduct his health needs as a carer and wife. Its the patients confidentiality regulations that cause these problems. Your husband needs help right now as his health is deteriorating , you need help too, I would contact social services for a carers assessment , they often do it on the phone nowadays. You can still have a home visit from GP if the patient is too ill to attend surgery. Even people who are terminal are entitled to be made comfortable by their own GP practice. You can of course admit him to hospital yourself but that's not an easy decision to make. Welcome to the site and I do hope you can get that vital face to face that you & your husband need to confirm what you suspect that he is iller than what he makes out. A tip my daughter said she was not prepared to watch her husband suffering at home without help. Keep in touch with us I will be thinking of you , take care and demand your rights. You are entitled to support.

Linmac66
Linmac66 in reply to katieoxo60

Thank you katieoxo60. I really just want him to have full assessment. He could attend an appointment - he can still walk. If they saw him I’m sure they’d realise how ill he is. I’m resolved to be more insistent with them - and him.

katieoxo60
katieoxo60 in reply to Linmac66

That's the idea, looking at another thing you spoke about , a nebuliser is easier and many other gadgets too. Most inhalers come in powder form too which are easier to inhale than propellant inhalers , but cost more so some doctors wont prescribe them only the hospital. Another problem could be that the drugs your husbands using are not suitable to him. As you have realised its time for change and you may have to be cruel to be kind as we say. Take care and every best wish to you both.

i do feel for you all. Personally,I would ring gp and ask for an urgent home visit,unless hubby has a wheelchair & u can take him to see dr.u need to tell dr all this as prob too much for hubby to say.if cant get home visit,then request urgent telephone appointment and explain situation to dr & tell him exactly what u have told us,as dr can help with medications.Does hubby have a nebuliser? If not,ask dr for 1.

I hope his meds get changed, and u get the help u and hubby need xxxc

Linmac66
Linmac66 in reply to Patk1

Thank you Patk1. Personally I think a nebuliser would be great for him. I think he struggles to inhale sufficiently with the inhalers.

Welcome to the forum, Linmac. Brickies are obstinate old things- my dad was one- and their work could involve some mucky dusty jobs. However, father lived into his 80ies with emphysema.Everyone here is right-you need and deserve more help. You'll have to decide which road to go down. Can you put your foot down with hubby? Tell him you have needs too and it's daft to expect you to manage his condition when there are people out there who will do it better. And harrowing for you to see him so ill. Best of luck whatever you decide.

Linmac66
Linmac66 in reply to Alberta56

I asserted myself yesterday and he seemed to accept it so fingers crossed. I told him what people had been saying on here and that he doesn't have to live like this and that I was going to step in.

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