New .... advice please? : Hi, I was... - British Lung Foun...

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New .... advice please?

Eddie1973
Eddie1973

Hi, I was diagnosed with COPD 3 years ago. I’m 44, smoked most of my life. I gave up for a bit when I got my diagnosis then started again as life’s stresses got on to of me 🙄

I’ve just given up again (now done 7 weeks) as my chest was def getting worse.

I’m quite young to be diagnosed, my docs acknowledge that. Also I need no drugs or inhalers. I was starting to as a smoker but now not at all. I never get out of breath walking. I have an 8 year old autistic son who is energetic and challenging! I’m never out of breath playing. I have googled lots on mild copd but nothing really answers my questions! Which is why do I have copd when need no treatment? I’m kind of thinking it’s a blessing as I’ve been sent a message to quit smoking and live for my child who really needs me but I’m still struggling to understand my diagnosis and wondered if anyone has any advice?

Thank you 😊 xx

29 Replies
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Hello and welcome. I don’t really have any advice though I’m sure you’ll get plenty soon enough, everyone is very helpful and supportive here. Stopping smoking is a major step in managing your condition, which you’ve done, so that’s great 👍 How were you diagnosed with COPD? It’s amazing you don’t have or need treatment. I don’t understand how or why but I’m sure someone will be able to explain that too. Best wishes to you.

Thank you for your reply. I was having some back pain and saw an osteopath at the gp surgery. He suggested asking my doc about checking my chest as he said it seemed ‘tight’ so she sent me for spirometer test and I was diagnosed. I was given an inhaler which I was starting to use a lot more when I was smoking. Within a week of giving up this time all the wheezing and rattling in my chest stopped. So obviously stopping smoking is a must for me! I then went for another test 2 weeks ago and she said my lung function has deteriorated. So I was just a bit confused with it all.

She did say to me that they think they have only diagnosed 1/3 of cases, so maybe 2/3 are like me and don’t have signs? I’m just lucky to be diagnosed so know to stop smoking. Thank you again x

Here's some advice: stay away from cigs and, considering your good fortune, don't look a gift horse in the mouth !!!

Look on it as a wake up call to live a healthier life - better diet, keeping active, avoiding people with infections and things that trigger attacks like smoke and some perfumes.

I cared for someone who didn't do these things and his COPD got worse and worse and limited his life greatly before it contributed to his death at 73. I have COPD myself now but have moved my level from moderate to normal by taking care of myself. I have no intention of going the way he did.

Eddie1973
Eddie1973
in reply to Ergendl

Thank you for your reply, it does help as although I know I should never smoke I find it so hard sometimes and then reading your reply makes me more motivated.

I’m a single mum to my autistic son and work full time, life is incredibly stressful and I’m very limited in what I can do. I’m going to start swimming in my lunch hours in the new year as know I must do more exercise. And yes thank you I really do need to see it as a wake up call xx

Hi Eddie. They say 70+% of people in the world have COPD. It builds up over quite some years. I am 77 been very fit most of my life. I have COPD AND EMPHASEMA. Had a triple bypass 27 years ago. Had a heart attack 5 months ago and had 3 stents put in. Am going for a Broncopsy in couple days. I smoked most my life. Over last 4 years been getting broncitis 2-3 times every year. I have stopped smoking now for 3 months and feel so much better.

People get it due to the general shit in the air we breath. It affects some people more. It cannot be cured but can be stabelised. Smoking is the worst culprit and you will just get worst if you go back onto smoking.

You can still live a long life if you stick to the rules, No smoking, eat healthy, Have the odd bacon butty, stay away from the fast food places, eat plenty veggies, get good excise do deep breathing every morning. Expand your lungs offten.

Best luck

Ken

Eddie1973
Eddie1973
in reply to Shaurene

Thank you for your reply, very helpful. I guess I’ve been lucky to be diagnosed!

Hi Eddie,you are fortunate to have been diagnosed early !

And giving up cigarettes is the first best thing you can do for you and your family.

The next best things you can do is eat very healthily, exercise inc. cardio vascular and strengthening exercises. Take any meds as prescribed and learn about COPD ( which you are doing )

If you use Facebook there is a COPD UK group which is an amazing support. I urge you to join it.

Keep well, be happy.

PollyP

Eddie1973
Eddie1973
in reply to PollyP

Thank you and yes I do see how fortunate I’ve been. I actually think they’re needs to be more awareness raised as although all smokers no it’s bad for them, I didn’t know much or understand much before I was diagnosed

It sounds as though you e been lucky to get the advice and change your life style and now I think if you keep away from smoke and try eat a healthy diet, exercise and get this all important vitamins hopefully you'll be well for many years to come.

If at anytime you do experience problems insist on a CT scan for the lungs as that's vital to see if there's any damage, a chest X-ray is not the same.

I have a disabled son also, he's 14 and I know how exhausting and worrying it can be so it's even more important for us to b healthy as they pressure can be diffulcult at best of times.

Good luck and keep yourself well.

Tip: get a flu jab every October and ask your GP for the pneumonia jab, you are entitled to have that with your diagnosis and you should have a top up of that every ten years.

Wash your hands like crazy to keep infections at bay.

Eddie1973
Eddie1973
in reply to Shancock

Thank you for this and yes I can see how I have been lucky to get this diagnosis so early

Hello Eddie,

Most lung diseases are progressive. However the progress can be slowed down, in some cases a little, in some cases a lot.

For some of us, early diagnosis and early intervention would have given us a lot longer for a chance at normal life. You have that chance : make the most of it.

Keep away from cigarette smoke, not just your own but other people's smoke. Eat a healthy diet, avoiding processed food, find activity you can enjoy, especially if it is with your son.

Keep in touch with the doctor and follow their advice.

Enjoy the health you have.

Good luck xx

Eddie1973
Eddie1973
in reply to wheezyof

Thank you for your reply. Yes I know from all the replies I have been lucky in having the chance to change my lifestyle. And you’re right I do need to make the most of it x

You are young for copd have you been tested for the alpha one antitryipsin its hereditary and can be a major factor in causing copd if not ask your gp for the blood test. you seem to be getting it all under control so keep doing what you are doing

Eddie1973
Eddie1973
in reply to corriena

The nurse I saw recently said that if I start exercising, stay off the cigarettes and if when she sees me next it’s still deteriorating then they’ll test for that. She couldn’t really understand why I had it and thought it might be mistaken diagnosis until she looked at my results thoroughly then did another test and it was worse. She said some people with my reading can’t take 20 steps without struggling and some are like me. I just found it a little confusing. It’s very obvious I would deteriorate very quickly if I start smoking again though!

The best thing is exercise. Pulmonary rehab offer a great course.

Hello and welcome. Im 51 and like you smoked most of my life (an ex smoker now thank goodness but for me that thought "I would love one of those" is never really that far away but never mind. I have 2 and a half grandkids and I get out of breath quite easily which is sometimes heartbreaking because I want to do more with them. On one occasion my eldest granddaughter who was only one and a half at the time had hold of my finger and walked me around the outside of my house and back really slowly but never took her eyes away from mine. I was really poorly at the time and could harldly breath just standing up. She could hardly talk, I had the biggest lump in my throat, felt my eyes wanting to fill up and promised her once I was over that exacerbation I would take her to the field and park and would never ever touch another cigarette. I letterally cried that night, havent had another fag (could do with one all of the time but enjoy and love my grandkids too much).

Keep off the fags mate, enjoy not having to take any medications or inhalers and enjoy your life with your family and friends. Starting back on the fags, you risk loosing being able to even go for a walk with your kids or grandkids and believe me its bloody awful when you want to and cant. Wish you all the very best

Eddie1973
Eddie1973
in reply to robdonn

Thank you for your reply. It means a lot that people are taking their time to reply to me and tell me their stories! I think it’s really opened my eyes coming on here and that I absolutely can’t smoke again. I’m like you, the thought of I’d love one is always there and I’m only 7 weeks in, which is v early days when I’ve smoked for 30 years!

I’m terrified for my son, his father washed his hands of him and hasn’t seen him for 5 years. He’s only 8 and he relies on me so much, with his autism too he desperately needs me to be around so I just keep thinking about that.

Thank you again, I definitely will take on board what you’ve said

Eddie, consider yourself lucky to have been diagnosed so early... I was 60 when I was diagnosed and had lost almost 50% of my expected lung capacity... I quit smoking at that point. I'm now 82 and have the same expected lung capacity for some one my age.. As my doctor pointed out that expected capacity also decreases with age, so 22 years later I'm on oxygen 24/7, have sleep apnea and wear a full mask every night... I've been going to pulmonary rehab twice a week for 6 years now.. started on oxygen almost 5 years ago. I still lead a somewhat active life, thanks to some long time friends... out for lunch every Friday... meet with others for happy hour the first Wednesday of the month.. Used to have a portable concentrator but now am strictly on tanks which make long distance travel virtually impossible. Keep plugging away and do whatever you are capable of... Enjoy your life to the fullest... Bob from Minnesota

Sorry for the confusion..... I am still at the same percentage of expected lung capacity for someone my age (less than 50% of expected capacity...). If a person was at the expected capacity for someone 82 years old they would not be on oxygen nor would they have COPD. I credit stopping smoking and exercise for maintaining that percentage... If I had continued to smoke, I doubt that I would be typing this now... I started using oxygen in april of 2014... I was diagnosed with sleep apnea and put on a VPAP machine at nights in October of 2014. I started Pulmonary rehab in Feb of 2012 and in 2014 was unable to use the treadmill without a significant drop in oxygen levels... Hope this helps explain the situation...

Hello Eddie. Nice to meet you (although under different circumstances would have been preferable)! Like you, I've been diagnosed with mild COPD pretty young at 40.

I wish I could say that I'm symptom free- I'm asthmatic and have been all my life so I always put down any breathing trouble to that and it's now hard to tell what's COPD and what's asthma. I only really began to worry after I quit smoking (which I've done moderately on and off for 18 years) a couple of months ago and found that I couldn't breathe properly. I'm a bit annoyed I wasn't offered regular spirometry due to my asthma but I'm even more annoyed with myself that I smoked for so long. I always gave up but then re-started and carried on a little bit longer thinking that if I quit before 40, I'll be ok. Anyway, that can't be changed. I quit now and will stay quit!

Like you, I have a son. He is a bit younger, at 7, and keeps me on my toes especially since I've very recently become a single parent. (Husband left after my diagnosis citing my long history of anxiety disorders and stating that he doesn't want to spend the rest of his life looking after me. Which was nice). I need to stay well for my son.

Anyway, this is going on a bit! Sorry. I'm glad you're symptom free so far and glad that you are now able to make some changes to your lifestyle. I don't know what advice to offer you as I'm new to this too but I think you've been given some very good replies above. This forum has been a godsend to me over the past few weeks- everyone is so sincere, gentle and understanding even while I'm in emotional turmoil. Please let me know if I can help in any way. Stay on here and keep asking questions. There are a lot of people rooting for you here.

Much love. xx

Hi, thank you for your reply. Just out of interest my sister was a smoker (asthmatic too) she smoked much less than me (maybe 7 a day) she gave up when she was 37. For about a few years after giving up she was back and forward to her asthma nurse, struggling all the time with her breathing, she has tried lots of different inhalers. They have said it’s her asthma, nothing else but the fact that she had some anxiety, the motion of dragging on cigs probably helped to regulate her asthma!?! Anyway it’s no reason to smoke and she never went back as it absolutely would not have helped. I suppose I just thought I’d mention it to you as she was such a light smoker and such a hard time after giving up. She’s v regulated now and hates smoking 😊 and v pleased I’ve given up.

As for your husband, sounds like a right charmer 🙄. My partner left very shortly after signs of autism in our son was mention, another charmer! I’ve been single mum for 6 years now and I’m very happy! My son is my life and like you I just want to be there for him

The site is amazing and all replies to me really helpful. I am going to start swimming in my lunch hours in the new year as exercise seems to be a key bit of advice! Thank you again and if you need support then let me know. It’s hard on your own, I know, but can be so rewarding too. If he can do that to you then he doesn’t deserve you xxx

Hidden
Hidden
in reply to Eddie1973

You need to take the simple blood test for alpha one antitrypsin deficiency. I was diagnosed at 47 yrs old with the worst genetic type being ZZ. Your young for copd. When I was diagnosed I was already stage three. And I didn’t even know anything was wrong with my lungs. I’d gone in for sore joints and was put on methotrexate for arthritis. That drug is what began affecting my breathing and lead to the blood test for alpha one. It’s important to find out if you have this as early as possible. Then you can get the correct treatment for it.

Artichokes
Artichokes
in reply to Hidden

My GP won't test me for this- said that the COPD is fully explained by smoking history, asthma and childhood infections. Nor do I have a family history of early or severe lung disease. I find it strange that they won't as it's a simple test and seems pretty important to know! I looked up the guidelines and it says to test if diagnosed under 40. I was diagnosed three months after my 40th. Talk about literal. I will press for it eventually but I'm trying to get to the bottom of a lot of things at the moment and I can only fight on so many battle fronts. Thanks for your input and take good care of yourself Apeter. You seem to be doing a good job. x

Hidden
Hidden
in reply to Artichokes

You can contact the alpha one foundation and get the test sent to you for free. Then send it back. They will tell you and it’s anonymous. Just bypass your GP it’s your health and your life!

Artichokes
Artichokes
in reply to Hidden

It's USA only.

Hidden
Hidden
in reply to Artichokes

Yes USA. I assumed you have a alpha one foundation that will do that? I’d still try.

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