'm so sorry, it was only yesterday that I said I wouldn't post again for a while. And I feel that I must apologise, as I realise there are so many people much worse off than me, yet I can't stop crying. I can't get out of bed to face the day. Please forgive me for sounding so pathetic.
I was recently diagnosed with COPD [moderate - FEV1 50%]. I found out last week after being released from hospital post pneumonia. They put me on Trimbow twice a day, and I see the respiratory team in another 6 weeks. I [obviously] have an anxiety condition which I am receiving treatment for.
Thank you to everyone who has answered my questions regarding COPD, but I just can't get my head around the fact that I can't halt this disease, no matter what I do to help myself. I am 55 years old and my son and husband are the lights of my life. I had this [stupid] idea in my head that by doing all of the right things I could stay alive for at least another 20 years to be with them. The thought of waking up with this utter despair every day terrifies me.
Could someone please, please share a positive story/experience to help drag me out of this hole of despair I have dug for myself? Thank you so, so much, and I'm so sorry to post once again. I feel nothing but despair.
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puddy68
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I was diagnosed with COPD 20 years ago. It was moderate. I am still here aged 76. It is possible to live a good and useful life. To help myself, I lost weight. I exercise twice a week with a class and a trainer. I walk as well. You can do this !
I was diagnosed with severe COPD - FEV1 33% in 2010. I am now 73 and am still enjoying life and maintaining lung function as best I can through exercise.
I can see you are in Australia. Do you have a Lung helpline that you can ring and speak to?
There is one here in UK asthmaandlung.org.uk/helpline which can be accessed through email and Whatsapp as well as by phone.
I'm sure the helpline teams will listen to your concerns and offer advice to cope with your diagnosis and anxiety.
In the meantime try to take each day as it comes. Enjoy your family and allow them to support you.
Keep reassuring yourself that you should still be here in 20 years time, or much longer. We in Britain are treated to lovely TV programs about all the awful things Australians find in their houses-snakes, spiders and goodness knows what. They sound a lot more dangerous than COPD. (Just joking- television is not a good source of information.)🦘🐍🕷
I'm so sorry that you are feeling like this, as others have said, you could have a long life, just use your inhalers regularly as prescribed. I was diagnosed in 2015 and I still am in reasonably good health at 70, I have other health issues, but my COPD is kept under control. Just look forward to a long future with your husband and son. x
It is true you cannot halt COPD, but with a good exercise routine and a healthy diet you can slow it right down! Look at peoples' stories , it is not a death sentence!
However, you will find another factor common to them, which is a positive attitude 😘 You can do it, you have the best reasons to keep going 😊
So, come on, here's a hankie. Blow your nose and go do something fun with your husband and son...... Laughter is a good place to start!
Pneumonia takes a few months to recover from so your Fev1 could improve when you are fully recovered and you are probably still low after being hospital, do you have your full Spirometry results or only the FEV1 result?
You have to remember COPD is not a terminal disease . It's progressive and you decide how to control it. I was diagnosed 2010 with Severe COPD. Many have lived even 30 yrs and then passing with something else.Tomorrow is never promised for anyone so don't concentrate on what you can't do but what you can.
Everyone's lungs start to deteriorate after the age of 27yrs .
Life pases so quickly so enjoy every single moment. Positivity is the way forward
It's been a long hard 10months and a lot of really bad days. I'm so proud of my daughter Hayley as she never complained once . .6 hour surgery, 5 rounds of Chemotherapy , 25 sessions of radiotherapy and then 5 more Bracker therapy every day for 6 weeks. . She was so weak , but it's 2months since she finished her treatment and had the all clear. She returned to work last Friday, last time was 18th December 2023 when she received the devastating news.
Her daughter , my Granddaughter who is 16yrs old has been a great support to her Mum also doing her GCSE's and her Prom. She got 7 GCSE's and is now in College doing A levels. Im such a proud Mum and Grandma. Thank you for asking 2024 has been the worse year ever.
Hayley is a single Mum and her and Darcy are so close. She's truly a wonderful Mum
Hayley and Darcy are going to Dubai for Hayleys 50th Birthday in Oct. Hayley grew up in Dubai and went to school there as we lived thetr for years, so she can show Darcy so much.
Take care I'm so grateful for every little thing and we are soi lucky to get the outcome Hayley got. If she hadn't gone for her smear I dread to think
Hi I just want to say that it’s ok to be a little down with the initial diagnosis. Many people have some depression as a result of their chronic ill health… speak to your doctor. Stress however and the worry may make your illness worse so if you can get out of bed.. a shower, a bit of daylight and catch up with family or a friend- do one thing at a time build on it and try to reignite joy into your life. It’s a crap diagnoses … I’ve had my share but find if I accept it, see it for what it is and appreciate there are some good days in there (CBT cognitive behaviour therapy helped me) I find it easier to move forward.
Wishing you strength and courage to live the best life you can xxx
Dear Puddy, you have just come out of hospital and your body is still recovering. Thankfully I have never had pneumonia, but I have been in hospital with a severe exacerbation. I was really depressed when I first came home too. They probably pumped you full of steroids to help you recover, but they are a double edged sword. I find high doses of steroids really do my head in and if I'm on high doses I can feel quite suicidal. Roll with it for now and look for the sun at the end of the tunnel, it is there! I'm 72, single and have severe COPD with a FEV1 of 0.46 and I have scary moments but still live a rich and meaningful life. One has to adapt, but there is no reason that you will not live and happy long life. Try making a list of the positive things in your life, I bet there are many. You are wasting precious time worrying. Do look for support locally and get out of bed! Staying in bed is the worst thing you could be doing. Hugs x
I was shocked when I first got diagnosed after having pneumonia and I became depressed when I was later diagnosed with bronchiectasis. 14 yrs later I'm still here!
The pneumonia knocked me for six. It sapped every bit of energy I had and I could hardly walk into my garden.
One day, the sun was shining and I set myself the goal of walking out about ten steps and back. After a few days, I made it so I set another goal. Eventually, I was able to manage 20 circuits of my garden which I guessed to be the distance to my local shop and back.
With my husband's help and support, I got to the shop and, after a rest on a bench, I got back again. It felt great!
Later, for reasons unrelated to my lung conditions, I became virtually housebound and unable to go anywhere on my own. I honestly thought it was the end of my life as I had known it. Then a friend gave me a journal that she had beautifully covered. After a while, I felt I should use it so started to record 'silver linings'. Day by day, my journal built up with at least one positive thing from each day. Then I started to notice more positives until. I suddenly became aware that things were improving.
It was a tough ride for a while, but at the end I came out of the depression and felt physically better.
I was invited to attend pulmonary rehab groups which were an amazing help and support.
As far as my lungs are concerned, I am on the right treatment for them and, unless I have a flare up, I crack on with living a normal life.
One day, you will wake up and feel the weight has lifted. It might not be this week or next, but, trust me, the day will come and as you finally recover from the pneumonia you will begin to make positive plans for the future again. I'm sure of it!
I remember at a and e being shocked when I was told I had blood clots in my lungs but thankful they weren't saying we re sorry but you have lung cancer!
There is no reason at all why you should not be with them for at least another 20 years. I am coming up to my 75th birthday and have had COPD since I was 40 so some 35 years now. IF you get the chance to go to a pulmonary class take it, use all medication prescribed and do your best to stay away from anybody who is unwell even with just a sniffle, you can then lead a long life, so enjoy your family and try to stop worrying, I wish you well, Ruth
I was diagnosed in 2002 when I gave up smoking. I am now 82 and starting to struggle a bit. There is no reason why you should not have 20 more years but it's up to you what you do with them. Take all the help offered and a day at a time.
I was first diagnosed with having asthma, which it wasn't. Then it was called COPA, before it was COPD. That was when I was about 62, I am now 83, and I think there has been a lot of learning and progress by the medical fraternity in those 20 odd years in the understanding of lung disease. I come from a time when it was "cool" to smoke, which I did, as my dad and my siblings did. They all died quite young, and had an unpleasant time of it. We now know the correlation between lung disease and smoking, passive smoking and fumes in the atmosphere. I also come from a time when we relied on coal for our heating, and for driving our trains, and you could taste the sulphur in the air. I remember a fog when it took me 1 1/2 hours to drive 2 miles home, and it was only foggy for half of that distance. Probably 1959 or '60.
I had a very bad period of 5 years with chest infections, 18 infections in 2017. Since finding Black Mould in our bathroom and it's eradication in April 2018, I've had none. Twenty years ago, there was no, or at least not many CT scanners, and now our lungs can be examined in fine detail, and more correct diagnoses made. I've been put on a myriad of medication trying to help my conditions of COPD and Bronchietasis, and I've now on a selection which seems to keep me ok. I actually feel better than I did, say 8 years ago, even though I've contracted heart failure in that meantime. It took a while for the heart nurse to get me on meds. that keep me ok. I also use an adjustable bed, and always sleep fairly upright, as if I lay flat I tend to fill up with muck.
So, don't be downhearted. I'm sure that if you can get in to see a lungs consultant at your hospital, get the right medication that suits you, you can have a long and satisfying life.
I think that most of us here felt the same way as you when we initially found out our diagnosis but over time and with the help of respiratory teams, we have gradually come to terms with it and do our best not to make it any worse by following their advice re diet, exercise, breathing techniques etc etc.
The positives for you is that you're not subject to our NHS so you'll be seen more quickly plus you donn't have our awful winters out there. Also you may find that your FEV1 improves now that your on Trimbow due to the steroid element in it.
If you're still struggling to cope with this diagnosis (understandably) perhaps see your regular doctor and get your anti-anxiety meds checked? You might need a temporary increase until you've come to terms with this.
Carry on posting as much as you want, we don't judge here ❤️
Please have faith almost lost my husband 9 years ago from this condition and heart failure 9 yrs later here we are at hotel waiting to see a show this evening and overnight. There is life after this diagnosis steve is 81 next month.
When I feel bad because I can't do something/go somewhere, I remember when I could - the memory always makes me smile and I feel better. I am on oxygen full time and am planning to move from northeast USA to Australia to live with my daughter and her family. I am almost 80 and am excited and terrified at the same time, but am looking forward to the move. I think being positive - and finding things to laugh about - is important. And keeping busy! I hope you can find peace. Many, many years ago a friend's mother would say, "God provides."
You are where most of us have been at one time or another.I had fairly manageable COPD. Came back to UK in 2020 after 45 years in South Africa. Only reason came back was for family.so wish now that I hadn't. Had excellent medical there.
I have a golf ball sized stone in my gallbladder. Started giving me pain start of 2021 but consultant at hospital was adamant he would not operate because of my COPD. Wouldn't even consider epidural. And from then on have gone downhill having to take opoids and liquid morphine for pain. In 2022, little granddaughter brought COVID back from school. I did not receive any viral drugs and, in fact, the antibiotics prescribed had penicillin which does nothing for me and is on my record as being allergic!. Yeah! Go figure. As a result I now have serious emphasema. Then, last year I started coughing
But no ordinary cough . This felt as if I had water at the bottom line of my right lung. My Dr s tried DOXYCYCLINE but no change and I am now exhausted. Sent to hospital
Only received nebuliser 3 times a day. Getting more and more ill. Can't eat. Then believe it or not was more ir less told to go home!!!! Next day, my daughter took a sputum sample down to our medical practice in time to have it picked up for the lab. Result!? Very bad bacterial infection. Oh my Lord. I was so so ill. Dr started me on treatment. My daughters had to everything for me and I mean everything. Nurse was informed. Hospital bed and
Commod brought in but, always been independent so I get up to go to toilet slip and crash backwards into cupboard door. Now have a cracked L2. Really quite out of it. Remember Dr being in again and saying to daughters my stats were very low and he was admitting me to the little Nairn and cottage hospital. Seemingly i was there for a week
My daughters came in and helped me shower BUT i don't remember a thing. Nadal!!! Since then i have more or less been bed ridden
And tummy troubles now chronic. Also although i get to sleep, i wake up totally exhausted. I am in a dark place
I was healthy when I arrived back and fair weight at 60kg
Now I am down to 47kg and existing on custard and clear soup. I loved my meat. Had no problem with food when I left. I played competitive lawn bowls and never looked my age. Now!!! I no longer recognise myself . I use lady wipes to wash with most of the time as feeling too weak to shower. Bath was removed to make a walk in shower. Big mistake
Anyhoo my dear. I've given you all this information as to what I've gone through because iof medical negligence , and the fact I'm still here. AND THE KICKER IS IM 82 YEARS YOUNG!!!!!
I'm sincerely hoping that this helps you. This bloody disease is a life changer but, we are not alone. So many others going through their own battles. I am a member of COPD forum. It's really helps to be able to share how we are feeling; our troubles and woes. There's an app for it. Hope this helps. Blessings and love xxx
I am sorry for your condition. I do not have COPD but I have steadily worsening Bronchiectasis, I have had it for a long time. I attend Papworth Hospital and have done from 2003. Bronchiectasis is incurable, but it can be managed, as can COPD. you need a specialist consultant in COPD. I imagine that Papworth can help you, although they specialise in Bronchiectasis and Cystic Fybrosis. The constant medication and treatments can be exhausting and depressing, however if you stick to it, keep moving and keep interested in a hobby etc ( mine is singing) you should manage quite well.
There is a list of hospitals specialising in COPD on this link;
I have been chronically ill with multiple diagnoses, I have been ill since I was poisoned, Pink Disease (Mercury poisoning) I was 2 1/2 years old, I am still going strong at 75!
I empathise with you - I’m in a similar place. A deep dark depression. I’ve gone from pre-COPD to mild COPD & it feels catastrophic. Lost my Job, GF, all the sports I loved to do. I miss my old life..and to think things on balance will only get worse. Soul destroying. I really don’t know how people stay positive with such a life altering disease. Studies suggest it takes a wheelchair used a year to make peace with their situation so those stats are probably similar to us, especially if your COPD comes on fast after an infection / hospitalisation. I’ve got underlying asthma so possibly disproportionate number of symptoms.
I’ve always wondered it the people who had it for years & were slowly slowing down before being diagnosed, maybe have it slightly easier, as it’s more gradual. Also your relatively young, as am I (40) and to see my peers move on with life, and now I’m stuck & damaged goods - very difficult. Sorry I’m of a frustrated realist than a blind optimist.
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Please Help!
Allergies turn to COPD ..
COPD is so ;(£&&@ Frustrating!! 
