Sitting here in tears

Hello, I posted a few days ago about my partner. He has been ill with a bad cough, breathlessness and night sweats since Christmas. He's now on his third lot of steroids and now has a steroid inhaler. His meds finish on Thursday. He is going for a breath test to see if he has copd, on Friday. He's had a clear x ray. His gp did say he'd be very surprised if it wasn't copd.

He's not been too bad since taking steroids but today he's struggling with breathlessness after helping to load a lorry (he's a lorry driver) and his cough is not good again. He's worried and I'm trying to see the positives. Saying I'm sure once they find out he'll be put on better meds.

I'm finding it so hard and am scared what level he'll be at and if it'll aways be like this. No idea when he'll get the results though the doc did say if it's severe he'll see him straight after.

Will it aways be like this? Will he always be so ill? I'm so worried about his future.

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Glad to hear his X-Ray is clear. It does sound to me as if your GP is on the right track. COPD is not the end of the world, many of us here have it some more serious than others. We have people who are in their 80's here.

Hearing you have COPD is scary at first until you learn how to manage it. A good diet and regular exercise can work wonders. Even severe COPD can be managed sufficiently well to have a reasonable quality of life.

You might care to call the BLF helpline to talk to a trained adviser.

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Thank you. I was thinking of phoning them but as he doesn't have a diagnosis yet I wasn't sure. I think it's effected me because he was so down when I spoke to him. He's aways been happy go lucky and full of life but since Christmas he's obviously been in a bad way. He's 55 and always seemed healthy.

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I agree once you learn how to manage it you will feel a great deal better. Please keep in touch and let us know how you get on 😊 xxx

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I will thank you.

I know it seems silly because it's not even me that's getting diagnosed. I do of course know that whatever I'm feeling is nothing to what he's going through.

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How does one "manage" COPD?

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COPD is best managed through staying away from smoky atmospheres, taking sufficient exercise, eating healthily and maintaining a good weight, listening to your medics and complying with medication regimes and coming on here to get advice and support from other people who have the same or similar problems. :)

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I do so feel for you Hobbes as being a carer is hard sometimes. I hope your husband does better soon and does get the right meds for him. Do let us know how Friday goes. Thinking of you both. Xxxx

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Thank you x

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Hi Hobbes. I am supposed to be attending to something else at the moment, but was drawn to your message which is so heartfelt. I am thinking of you both. The main thing is not to take everything that is happening on board all at once. Things always seem worse that way; like a mountain on top of you. We also feel less able to deal with things when we experience a loss of control. Sit down and close your eyes, breathe in and out slowly and deeply and focus on one thing that is positive in your lives and one small thing you can do right now which you know will make you feel better. It may be phoning a friend, taking a walk, focusing on a hobby for half an hour even; just taking one small step will stop the stress from mounting and help you take control of what you are feeling. Believe. There will be things you can do to help your husband, in small manageable ways. All is not lost. Together you will face whatever you need to. You have the strength to do it. You have already helped yourself by speaking to us. We are always here.

Aidi-Joll 🌻

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Thank you so much. It does help so much to get all the replies here. When I posted my first post I did feel a bit selfish because so many of you are actually going through this and I'm rather on the sidelines, which is bad enough. You all have such amazing strength and tenacity.

We aren't married and are in a long distance relationship. I'm in Manchester and he's in Lincolnshire. Myself and my daughter are hoping to move up there in the next couple of years (she has her gcse's in 2018 which is what's keeping us here) so that doesn't help. I so want to be with him especially now but it is as it is.

I've aways been good in a crisis but this is different. I think it's the unknown that scares me so much and you're right, it's a lot to take on board for both of us.

My daughter will be back from school shortly so I need to pull myself together lol.

It does help so much being able to talk about my fears and getting replies are a God send.

Thanks you so much for your kind post. Xxx

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You're welcome 😀

A-J

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I'm in Lincolnshire too and am getting good care so don't worry too much, th NHS aren't too bad here in the sticks, If you're worried pm me, I don't mind xx

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Thank you so much. I may well do. If my OH comes on here, if it's OK with you would you mind if I pass your username on to him as well?

That's really good to know that it's good there.

Take care.

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of course it's ok, I only got diagnosed last February and it was so scary but I'm much better with it now thanks to these guys :)

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You are most definitely not selfish! This is a support site for anyone, and that includes carers too.

I so understand your predicament with your daughter, having two of my own.

Hang in there. It will get better. Sending you love and sunshine. xx

Cas 🌷🍀🌱🌿

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Thank you so much. I feel so welcome here and the comments are really keeping me going. You can't put a price on that xxxx

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Just been talking to him and breathlessness has gone which is good. The main thing he seems worried about at the moment is losing his hgv licence because that'd be bad financially. We'll just have to wait for answers now. xxx

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Please don't wait for a diagnosis before phoning a BLF nurse. I don't know the number off the top of my head, but someone here will.

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OK thank you. I know it's too late today but I'll try tomorrow. Ive got the phone number already xxx

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Hobbes, there are a number of carers like you and sassy59 here, and in some ways I think you have it worse than your charges! I know I've caused my husband a great many sleepless nights :( We "patients" know how we feel, but you just get to look at us and worry, often imagining things to be worse than they are.

Your GP sounds good, and I'm glad your OH is feeling better now. It's probably a case of trial & error with his meds until he finds and effective regime. Once he has a diagnosis, and knows what the treatment plan is, you'll both start to feel more in control. You're so right that it's the not knowing which is so hard.

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Thank you so much for your kind words. It's hardest because we are in separate parts of the country. Though I wish we weren't. The gp did say this would be his last course of steroids though they didn't work too well this morning. I just hope that it isn't quite as bad as we fear. At the moment I'd just be relieved if he's at stage 1. Hopefully he'll find the right meds.

His doctors surgery is always busy and it's taken three weeks to get the breathing test. Hopefully things might start to move quicker once he's diagnosed. Xxxx

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where abouts is he, I never have to wait that long?

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Hi Hobbes1966. I know what you are going through I went though this with my hubby. He was the same and couldn't shake the cough and breathless off. It turned out he has pulmonary fibrosis. I was devestated he had never been ill unlike me I have loads of things including asthma. He see a consultant and it was a was a bit of trial and error but since he's been on symbicort inhaler he's been great and don't have to use ventolin at all now. He's had Ipf for 3 years and he's better now then when he was diagnosed. He 72 and still works in the company every day. Good luck xx

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Thank you so much. This has given me hope. At the moment any kind of hope is greatly appreciated. I hope for his sake he can carry on working because I do know that would boost him no end because he does enjoy his job and of course it would help him not have to worry too much about the financial side of things. Take care xxx

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I hope your OH gets the help he needs and the right meds. My OH was so bad and he couldn't stop coughing and struggled to do anything. He is so much better now. We know he will go down hill at some point but his scans show very little detereation at the moment. He has never smoked but has been in groundwork and construction for 47 years so that's not good !! Regards to you both xx

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Thank you again. That's really good news about your husband. I've just looked up pulmanary fibrosis and it does say it can be slow or fast so it's good news for you both. Sending you my best wishes xxx

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I've changed my name to tigerstripes.

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hi, copd isn't the end of the world, it's a bugger but it can be controlled. Good healthy food, and a whole stack of exercise will help not to mention a positive attitude. Hope thing go well and don't forget we're here if you need us xx

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I can't tell you how lovely it is to have support, though I'm sure I don't really need to tell you that.

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you don't. Diagnosis is a scary place to be but only to start with xx

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He's in Bourne in Lincolnshire.

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not too far away then. There are good respiratory nurses around and some breathe easy groups too. We'll sort him out, don't worry (too much)

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That's comforting to know, especially with me being so far away from him. Thanks :)

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Once he gets his diagnosis it's easier because you can do something and know what you're dealing with so don't worry you'll have a good life. It may be a little different to what you planned but it;ll be fine. I have moderate copd, work full time and am just booking my latest gig tickets. Oh, I'm 60 years old and may or may not grow up one day lol!

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Lol my partner discribes himself as 55 going on 8 :)

Who are you going to see?

Thank you for helping me smile.

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the selector and The beat :)

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OMG you in to ska too? You couldn't have answered any better lol

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brilliant :) I'm a big Madness fan too :)

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Same here. Ever since Baggy Trousers. Ska was what got me and my partner together lol. We both love it. What a coincidence.

Keep the faith :)

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go to see madness a few times a year and the minehead weekender. kills me but hey, it's worth it lol!

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see, life doesn't end just because of copd :)

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Lol indeed it doesn't. I'm going to go to sleep in a much better frame of mind now. Thank you. Still can't believe I've found another nutty boy or girl lol. Wow.

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Lol absolutely! I've never done the weekender but I'd love to. I hear an awful lot about it on the fb madness site lol. Rod went to see the Suggs one man show and said that was brilliant. I'm still jealous of that.

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did the show 3 times (whoops) I'm on the madness site too but don't post that often. Book Minehead you'll love it. It's amazing, I'm knackered for a week after but what the hell, life's too short to worry lol!

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I'll make you jealous, hung on with Woody in his Winnebago along with Chrissy boy and have met Lee a few times too . They all go round the bars at Minehead :)

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hung out not hung on lol!

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That's taking it a bit far :D

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I met Suggs once at a book signing. Got it for Rod a couple of Christmases ago, and he was absolutely lovely. I'm so glad they all come across as lovely because they're a huge part of me growing up. It'd be awful if they weren't lol

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They are so ,,,, normal lol!

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:D

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From what I can gather even the healthiest come away knackered :D

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That is true lol!

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so happy to meet another fan :)

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Me too. I wasn't going to ask either. Glad I did now.

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G'day Tigerstripe

I have read you post and subsequent sound replies and advice from some of the "Family".

I too am a carer, albeit my wife has had a bilateral lung transplant" in July last year and since we started on this rocky road in May 2014 we have become involved with other sufferers and later on, transplantees and carers and we constantly interchange our thoughts and ideas.

What I am offering is not advice but merely information that we have gleaned from the group.

The things we have learned from each others role as carers...........

Never ever get ahead of the game...Until the doctor tells you the prognosis it is all supposition,..... from your post it appears that you are still waiting for answers. And obviously worrying, about what if ??

I know this will be hard for you,but i am speaking as one carer to another...not to a sufferer of lung disease.

You will need to be his pillar (or rock) if the news is not good, harsh words, but from one who has been there and lived with it for over 3 years. Whether he will admit it or not he will need your support if the news dictates it.

Never let him see your pain on this journey but support his every need. This will be possibly your biggest hurdle to jump. Stay focused on what needs to be done...Medications...GP or hospital visits. Some of our group of carers ,both male and female have admitted to going into another room, just to cry when things became unbearable, not wanting to let their loved one see them in such a state.

I can guarantee that if he sees you strong in your demeanor it will be the best tonic he can receive.

I do not mean to steer you in any direction, as you must do whatever you think is best FOR BOTH OF YOU, but if you become unwell thru worry, how can you possibly be there for him.

I wish you all the best as you undertake this journey.

GOD Bless

Will (Australia)

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Thank you very much. It's going to be difficult.

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Please remember you will not be alone ,there are many on HU who are dealing with COPD, and if this is the problem in your case, you will have plenty willing to aid you.

I cannot, as our disease was IPF.

From what I have learned about COPD...you can both manage and live with it..

Best wishes and GOD Bless

Will

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Thank you so much. God bless.

Karen.

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You are most welcome Karen

Will

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Hi 2 of my sons and there friends and my eldest grandson go to minehead every year to see madness. They wouldn't miss it. Lol

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Very good taste. Always nice to hear of fellow Maddies :) xx

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I'll wave to them. I love it, old bugger that I am lol!

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😂 they all come back totally trashed it takes them a week to get over it. My sons are 45, 48, and my grandson is 25. We live in Oxfordshire. xx

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Shows they enjoy it then lol.

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I always book extra time off work and I pace myself when I'm there but it is worth every ache pain and the extra inhaler puffs lol!

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See, now you're smiling again :)

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I certainly am. We'll all get through this won't we?

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Of course we will! Scared me to death to start with, then found this place and found out another friend (from madness group) also has it and the world doesn't seem quite so scary now. We all support each other and although I have to moderate my behaviour (a bit) it doesn't stop me doing much really. Still love gigging, still hate going to work every day, nothing really changes. You just have to be aware of stuff, like folks with colds, over doing it (too much). You be fine, just make sure he's eating healthily and exercising and NO SMOKING! otherwise just crack on :)

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I'll be nagging him over the phone. It'll get to the stage he won't want me to move down there lol.

He hasn't smoked for five and a half years though he was on e cigs but he's not even had that now for about three weeks because it irritated his throat. He is missing it though.

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my doctor and nurse are ok with me having e cigs but obviously better without :)

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His doc said it's OK but I think it was just because it was irritating his throat so much and made him cough more.

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The first hurdle is Friday or whenever he gets the results from that. He is supposed to be coming here on Sunday for a few days but it depends when his test comes back and if he has to go back when he's supposed to be here but we'll see.

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you;ll get through it, he'll feel down but bring him here, it'll help or message me I don't mind. Give him time to think it through and then bring him to Minehead lol!

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I just didn't think there was going to be a future but now I make plans as nothing is happening other than getting older :)

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I think that's it, the emotions you have to go through. Very daunting but then focusing on what you can do.

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Lol I certainly will.

I'll heavily suggest he comes here. It's a true God send.

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right, bed for me as I have lovely work tomorrow. Take care and don't worry too much, you'll cope fine xx

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Thank you so much. I'm off to bed too. It's lovely talking to you. Please keep in touch. Good night.

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Hope he's had a blood test as the sweating and breathlessness are symptoms of blood disease ( MPN's -I have it and can be treated -mine is PV. Dr would have heard of the MPN blood diseases.

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He's having a blood test when he has the breath test. I haven't heard of what it is you have. There's so much to learn.

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It's not something people know about much -good luck.

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Hello, I've been away and have just seen your post.

Adding my welcome and empathy for how you're feeling about your partner. I see you've had lots of lovely replies so I do hope you're feeling more encouraged now. The British Lung Foundation at its best, it's lovely to see so many kind responses to a cry from the heart 😃

In time he will be sorted out. It doesn't happen overnight to get the right medication for him - we're all different and responded differently to the various inhalers available.

Not sure if anyone's mentioned PR? Stands for Pulmonary Rehabilitation, a course run by the NHS to help with maximising lung health as well as education. Knowledge is the key.

It could help you both if you write 'newly diagnosed with copd' in the search bar top right. There you'll be led to the archive of old posts & replies which can be so very helpful. There's so much we can do to help ourselves.

Good luck to you both, your daughter too with her GCSEs. Peege

PS hope none of you smoke 😢? If so time to stop x

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Thank you. No neither of us smoke. My partner stopped five and a half years ago. It's daunting and this week is going very slow. We both just want answers now and hopefully it's not as bad as it could be.

I have read here about people mentioning PR so if it is what the gp suspects then we'll certainly look in to it. Thank you so much for the information. Xx

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Just a quick update. My partner had his breathing test yesterday evening. The nurse told him she can't diagnose him as that's the GP's job but he definitely has an obstruction. She tested his oxygen level with the finger clip and it was 99% so that's good. She did say that even though she can't diagnose him, whatever he has (we are still expecting copd) it's mild.

A bit of a silver lining then. His GP appointment is on the 15th March so we'll know then. Thank you all for helping. Xxx

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It could be pneumonia my friend had the same syptoms for three months coughing really back 24/7 and it turned out to be pneumonia which the doctor had not picked up on

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