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newly diagnosed copd

fritz18621934 profile image
30 Replies

i have just received a copd diagnosis, really by chance. i was given a lung function test as a volunteer in a medical research project and given feedback suggesting I contact my gp — 52 %. i had more tests at the practice and the gp said on the phone that the results are better but I have mild symptom free copd. I am 67 and stopped smoking in 2005. I have done regular vigorous exercise for years - gym, swimming, cycling and have no problems with breathlessness. I am expecting results of a chest x-ray and am being referred to the nurse. Meanwhile I am very worried but also moved by the courage and mutual support of people on this site. I would be very grateful for any replies.

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30 Replies
HungryHufflepuff profile image
HungryHufflepuff

Hello and welcome. It sounds like you're doing a lot of things right, with the exercise and not smoking. You'll get lots of help and advice here, it really is a supportive and friendly community.

fritz18621934 profile image
fritz18621934 in reply to HungryHufflepuff

thank you for the warm welcome and stay well

2greys profile image
2greys

Hi, It is a bit scary, with the uncertainty, when first diagnosed. Especially when you google it and get all sorts of doom mongering sites come up, which you should ignore, along with those sites offering snake oil "miracle cures". You are already doing a lot of the right things to prevent the disease from advancing fast. You have given up smoking and exercising, hopefully you have a healthy balanced diet as well. I do not think that you need worry yourself too much, it is not an immediate death sentence at all, you will probably live to a ripe old age. I believe that exercise is a very important player in managing this horrible disease. I have always been very active and did not even know I had COPD until I was diagnosed as severe.

I was lucky to find out the real facts about this disease very soon after diagnosis, as a result of that learned that remaining active and exercising was beneficial, it slows the decline of COPD. I decided, that being self-employed, to continue working, despite the fact that I could have retired. That was 2 1/2 years ago, I will soon be 69 years and I am still working full-time, can still walk 5 miles (at a push), can still lift and carry a 30 Kg shopping trolley up three flights of stairs. I have hired a sailing cruiser, booked for a weeks holiday at the end of May. Life can still go on with COPD, I can testify to that.

The secret is NOT to give in to it, sure there are some things that I cannot do anymore, like running, but I can still do more things than not do them, I still have a very good quality of life.

To add to my severe COPD, I am also in my first year of remission from lung cancer as well, which I also worked through whilst having radiotherapy, I could not have done that if I was not as fit as I was/am, even without already having COPD.

My underlying message is keep doing what you are already doing and you will be doing yourself a real big favour. Exercise is really key to managing the disease and getting the best out of life.

fritz18621934 profile image
fritz18621934 in reply to 2greys

thank ypu very much 2greys this is very inspiring. I’m going to keep with the gym which helps my mood too and do more cycling which gets the lungs going. enjoy your Christmas holidays!

K-Kilcoyne profile image
K-Kilcoyne

Doing the right things,keep them going, one thing, any advice needed check on this site or direct with our wonderful nurses and doctors.

Don't Google.....I did and was so depressed afterwards.

COPD is manageable, always remember that.

I wish you and yours a Very Happy Christmas.

fritz18621934 profile image
fritz18621934 in reply to K-Kilcoyne

Thanks for the sound advice and for replying on Christmas morning. I’ll talk to the BLF nurses after the holiday. A happy and healthy Christmas to you!

Whitechinchilla profile image
Whitechinchilla in reply to K-Kilcoyne

You are so right about not consulting Mr. Google every five minutes. I know I got totally overwhelmed. It’s all about baby steps and one day at a time.

Superzob profile image
Superzob

Came as a bit of a surprise to me, too, when I was diagnosed with moderate/severe COPD at 66 when the only symptoms I had were incessant winter colds (which seem to have subsided) and mucous (which I still have) - I had never smoked! But, with treatment, my lung function has risen from 50% to 63%, though that may be due to some late onset asthma, which is easier to treat.

I don't know if you've yet been offered any medication yet, and there is a lot of debate on this forum about whether to take it if you actually feel OK, but my consultant believes that it does reduce further lung deterioration, and my own experience (except for the mucous!) suggests he may well be right (I've had no further deterioration in two years).

Hope you continue to feel fit and healthy.

fritz18621934 profile image
fritz18621934 in reply to Superzob

Thanks so much for this encouraging reply, much appreciated. I’m learning from you and others on here that though this condition is irreversible it is possible to improve your numbers significantly by doing the right things. So I am telling myself: on yer bike. I don’t know yet if I will be offered medication but I’ll remember what you say. All the best for a happy and healthy 2019!

Whitechinchilla profile image
Whitechinchilla

Welcome. You are among friends here who understand, don’t judge and will encourage you. I know a new diagnosis can seem overwhelming. So try and take baby steps if you can and post here so others can support you. It’s like one big extended family. Good wishes.

fritz18621934 profile image
fritz18621934 in reply to Whitechinchilla

Thanks so much for this encouragement. I really appreciate it at this tough Christmas. Sure I'll speak up in this group. I've been very moved by the welcome and the stories I've found on here. I hope you're doing well, and all the best for 2019!

Whitechinchilla profile image
Whitechinchilla in reply to fritz18621934

Thank you and to you and yours too. Good wishes.

fritz18621934 profile image
fritz18621934

Thanks a lot for reaching out with this reply! There is a lot of hope and encouragement on here and I’ll keep reading and posting. All the best for a happy and healthy 2019!

Eddie1973 profile image
Eddie1973

Hi, I got diagnosed 3 years ago, also by chance, at 41. I got really freaked out, stuck my head in the sand, gave up smoking and then started again (I have a very stressful life, on my own with my autistic 8 year old son and work full time)

So I’ve basically ignored it for 3 years. I started to notice this summer breathing getting worse, but even then I wasn’t taking regular medication. I’ve given up again (8 weeks now) and feeling fine with no breathing problems.

I think coming on here was one of the best things I’ve done as I’ve finally faced things. Reading others stories makes me realise how stupid I’ve been for the last 3 years. I’m hoping that I’ve come to my senses in time to slow down the deterioration! I’m going to start more exercise in the new year. I do agree with the replies to you and advice given to me (by my nurse) that pushing yourself physically helps. I also wonder if my lifestyle has helped a little (in place of not being able to exercise) I am on the go with my son all the time and rushing round like a headless chicken most of the time! So maybe that’s helped with me not showing symptoms!?

My New Years resolution is to stick to not smoking, do more exercise with a hope that I might improve things (or at least hope I can slow it) I’m young to have been diagnosed and very scared now I’ve finally faced up to it. Mainly for my son as I’m his world.

I can’t thank everyone on here enough as we all need support x

fritz18621934 profile image
fritz18621934 in reply to Eddie1973

Hi Eddie, thanks for writing. Congratulations on the 8 weeks. I don't know much about COPD yet, but I know how hard it is to stop smoking and it took me many attempts, also because of life stresses. At eight weeks, I hope the physical cravings will have subsided a bit. I found the psychological cravings gradually grew weaker and less frequent, though they could still catch me unawares. But soon they will go away and you will not think of reaching for tobacco, promise. Hope is a better motivator than fear and you have a good run-up to a New Year's resolution. Congratulations on getting your breathing back and I'm so pleased you feel good. This should help you start some exercise, and exercise is a great stress-buster. It is hard being diagnosed so young, but maybe it also means this has been discovered in time, and you will have many, many active years being there for your son and yourself.

So here is all the very best for a hopeful and healthy 2019! You have a lot to live for. Don'y keep kicking yourself about the past. I smoked and drank as a young man, out of anxiety, and got myself into a real mess. I don't want to revisit all that.

Pluto48 profile image
Pluto48

Keep up the exercise...there will come a day a much longer way off...when it gets difficult,so the the more you exercise the further away that is.

fritz18621934 profile image
fritz18621934 in reply to Pluto48

Thanks mate, I'll give this my very best. I know I won't be able to keep it up indefinitely, but I tell myself that this is true for all of us, whether with COPD or not! I hope you're doing well and in good health and spirits. All the best for 2019!

Candyred profile image
Candyred

DONT GOOGLE ANYTHING..

that’s the best advice I can give you .. ask questions on this site .. any questions! they may seem silly to you as you new to your diagnosis but I promise they won’t seem silly to us .. oh and welcome xx

Hi fritz! I was diagnosed two months ago so can completely relate to the worry but have found everyone on here to be so kind, patient and uplifting with us newcomers. Wishing you a great 2019!

fritz18621934 profile image
fritz18621934

Thanks Artichokes for writing to me when you have so much on your own plate!

I've read your posts and you are going through a lot, with great courage. All the very best for the New Year! The kindness and patience of this forum that you mention should take us a long way.

in reply to fritz18621934

Thanks fritz! Onwards and upwards...

CLARAmay profile image
CLARAmay

You are definitely doing the right thing are you a male or female?

fritz18621934 profile image
fritz18621934

Thanks Clara, and this bloke hopes you are doing well!

CLARAmay profile image
CLARAmay in reply to fritz18621934

Thanks I’m the same as you I just walk heaps non smoker for 11 mths on the 2 jan

fritz18621934 profile image
fritz18621934

Congratulations on the 11 months. Bet you feel so much better. All the best for stepping out in 2019!

CLARAmay profile image
CLARAmay in reply to fritz18621934

Hi how are you, I hope your feeling better

fritz18621934 profile image
fritz18621934 in reply to CLARAmay

hi Clara thanks for writing. I’m doing a lot better psychologically though still get thrown off balance every now and then. Very mild days and I’ve been doing long walks through London. Hope you are doing well and that you’ll celebrate your first anniversary in style, next Wednesday I think!

CLARAmay profile image
CLARAmay in reply to fritz18621934

Hi Fritz, my one year Anniversary, is on the 2nd feb, sorry my 11 mths is on the 2nd jan, I also found the smoking lozenges were great when I had a craving as they have 2gm or 5gm nicotine in them they helped me to, also I ate peppermint lollies and chewed on chewing gum.

fritz18621934 profile image
fritz18621934 in reply to CLARAmay

hi Clara not long to a year tho and I imagine the day to day cravings have long subsided and you are enjoying the benefits of not smoking like tasting food! I had a very hard time giving up, countless attempts. in fact I gave up in 1994 and had 8 smoke-free years but then hit a crisis in life and lapsed for 3 years. So 2005 is my base-line but I hope and trust never again! A happy and healthy new year to you and yours!

Perrythomas profile image
Perrythomas

Hi- don’t ever worry about this condition- everyone is different- just keep healthy, fit and enjoy life 👍

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