COPD Emphysema

Hi, I've been unwell for a couple of years. Since last September I've had a barage of tests from blood through to PET scan . Was diagnosed with a lesion on lung, end stage COPD & Emphysema three weeks ago. I struggle with my breathing & tiredness, but the night sweats are horrendous & I'm pretty sure it's connected to diagnosis I've had to strip my bed three times this week already.... but I caused my issues & I'm trying to find a way through & at times it's hard as I live alone. Alongside other health issues ... I was looking for just a bit of help on navigating this new life I'm living. Thanks to anyone who reads this x

[Patk1]

Welcome to the forum x

[Alberta56]

I'm sorry you're living like this. I hope your medical team can stabilise your condition so the side effects will be less awful. I think you need to talk to your doctor about night sweats, because we on this forum are not medically qualified. The only time I had night sweats like that was in the early days of menopause. I don't know if it is possible that your body is reacting to some new medication.

PS Welcome to the forum. You'll find plenty of ideas on here for dealing with the commoner side effects of COPD and enough fun posts to keep us all going. xxx

[Hidden in reply to Alberta56]

Thank you so much ...I think that's all I'm looking for is support from people who understand what this feels like ....friends are great but they don't get it & think I'm just tired & sleeping because I'm lazy & that's so far from the truth I have a home full of pets so my time is always round their care! I was always active & it's hit me hard that I need to decide what is desperately needing to be done one day & what can be left for another time but as I see it .....I'm still doing it & that's a positive in my eyes .Thank you for prompt reply xx

[Alberta56 in reply to Hidden]

It took me a very long time to educate my husband. He would shout 'wake up!' when I nodded off, not realising that it was my illness (lack of oxygen) which made me too tired to stay awake. Good luck with your friends. xxx

[Chinadoll81 in reply to Hidden]

A lot of people just don't understand what we are going through. Even my own family; although I have asked them many times to actually research COPD. Since catching COVID in 2022, I now have emphysema and, towards end of last year, I developed a horrendous cough. Felt it at bottom of right lung. It felt as if I had fluid there. Three visits from GPs. No response to antibiotic, so went to hospital. Apart from nebulisers, no other treatment. Getting so ill now. Exhausted with the cough and can't eat. They had taken sputum samples but never heard results and next I know is a lady is wheeled to my bed. She us waiting for me to vacate it.!!!!two nurses come to me to say I would be better going home. Can you understand how I felt? No treatment, getting worse and worse each day. When I got home, got my daughter to take sputum sample to our medical practice in time to be uplifted by the lab. Result??!!?? A severe bronchial infection!!! GP from practice came in. Started me on some sort of antibiotic but it should have been administered at the start as now i am desperately I'll. Couldn't do a thing for myself and thought i was dying. Everything from then on a bit fuzzy. I do remember one of my GPs saying to my daughter that my stats were to low and i was taken to the emergency hospital next to the practice. I am told i was there for a week, but i can't remember a thing. Now. Because of medical incompetence, i am more times in bed than out. So please keep active as long as you can. I was always a very active person and how i am now is so depressing. Thanks all for letting me share with you. Blessings and love xxx

[PaulineHM]

Hello,

Welcome. I am sure you will find lots of helpful support here.

There is lots to learn when one receives a diagnosis such as the one you have been given. Although, the good news is that there is much that you can do to help your life and health to hopefully run a little bit better.

Firstly, ‘End Stage COPD ‘ can mean many things. We are trying to encourage the clinicians not to use it as it isn’t very helpful. COPD has many iterations. Some people have a high symptom burden with less severe COPD and vice versa. It depends on the person with the condition, how it affects them physically and mentally.

Personally I don’t know of a link between night sweats and Emphysema COPD. Could that be linked to your other health issues ? You could call the Asthma UK helpline for guidance ? The specialist nurses there are incredibly helpful.

I would encourage you to stick with the forum. There are some incredibly experienced people who have lived with the condition for many years and still have a good quality of life,

Go well

Pauline

[B0xermad]

Hi khaotic1 , welcome, do you think it could be a medication for copd emphysema that is the culprit for night sweats ? The reason I wondered if it is due to a medication. my drug called montelukast has an effect similar, after an hour of taking it I have really bad sweats with it and as I take it at 9pm within 2hrs it starts my sweat process which lasts till early hours of the morning. I have definitely been through the menopause by quite a few years now so not that.my husband takes the same medication and no effect from it at all on him.

[Izb1]

Hi Khaotic1 and welcome to the site. It's hard for many of us living alone with illness and a shame that many families are living dotted around the globe unable to give support, some communities have support groups so would check any in your local area. I am going through tests for giant cell arteritis at the moment and am suffering terrible sweats not just at night and when I looked it up it is connected so it could be the same with you, I would ask your gp, there maybe something they could give to help x

[Hidden in reply to Izb1]

Thank you for your response I to have the sweats all through the day ,night is worse I feel! My surgery have been slow in responding to my dedicated lung nurses emails to sort out meds . I will also ve going for a heart trace & other tests as there may be an infection in heart or around it. This is possibly being looked at as history of heart disease is hereditary. I lost a cousin to some form of fungus on heart hence the tests, I think if I get answers then its always easier for me to deal with but I'm grateful for any advice from people dealing with these issues ...thank you x

[Izb1 in reply to Hidden]

I have a ceiling fan over my bed , cotton summer bedding and a lightweight 4tog quilt for night sweats which I have had since 40, although they did calm for a while but are back full force at the moment. I am hoping once I get a firm diagnosis I can get help with this and hope you can too, chase your surgery x

[Thepainterswife]

Hi khaotic , I’m so sorry to hear you’re suffering right now , I’ve experienced night sweats and I know they are absolutely horrendous but in my case they weren’t caused by copd My husband had Copd emphysema and he never suffered from them so I would advise as others have that you see your GP . Don’t focus on “end stage “ , my husband was never told he was end stage , his condition did progress obviously but it took nearly twenty years and for most of that time we had a decent quality of life with the aid of oxygen , medication etc. I also understand how difficult it is to deal with a serious health issue whilst living alone , I hope you have family or friends who can help Ask your GP if you need more support with housework etc and be assured you’ll always get support from the people on this forum 😊 xx

[Hidden in reply to Thepainterswife]

Hi many thanks for your reply. I'm not Medicated as yet that's a whole other story & it's not the menopause as that was an early surprise in life .... I do get sweats during day also but it just feels worse at night or when you find you've slept in a pool of wet most of night. I just wondered if anyone else had similar symptoms whether male or female ...Thank you x

[Thepainterswife]

My night sweats were due to a serious illness thats now being treated and I don’t have them anymore, my friend has them day and night due to antidepressants. Reading other posts it seems there could be a number of causes so if they are really getting you down ( as they did with me - I have woke up more than once at 3am and sat in a wet bed in tears ) you need to get help from the Gp - don’t suffer in silence I’m glad you have pets to care for , my dogs have got me through the worst times 😊 x

[Karenanne61]

Hi and welcome to this friendly, funny and informative forum.

[watergazer]

hi and welcome to the forum Khaotic1 I had menopause early and I still suffer from sweats night and day 20+ years on.

It could be my meds I’m on fostairnexthaler. However would rather have the sweats than give up the fostairnexthaler.

My husband can get really bad night sweats. Doesn’t seem to be any thing we can put them down too. I’ve told him to see the GP but as yet not been.

Take care. 🤗🤗

[Patk1]

I get sweats too,day & night. I do take a supplement - black cohosh,which helps but when I've an infection or when 02 drops+ I'm tired, sweats are bad.After hysterectomy,my body reacted badly to loss of hormones - I used to sleep on a towel,when I woke,I'd also sleep on a towel on other side of bed.whn I woke again,other towel would b dry so I'd go back to usual side.

[daughterjerry]

It sounds miserable. Please seek medical advice. I have found this forum a wonderful source of a patient, kind and thoughtful community who help you realise you are not alone. I hope you gain strength and hope from them/us.

[Nula2]

Welcome to this lovely forum xxx