COPD : The fickleness of Disease prog... - British Lung Foun...

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COPD : The fickleness of Disease progression

RedSox
RedSox
45 Replies

I have spent this morning reading many posts and replies and am thoroughly fascinated with all the stories of how COPD progresses and it’s levels of rapidity. On the other hand I also read posts on this and other forums of folks who have remained in their stage for well over 20 years and some who pass away from other diseases. The bottom line is unlike other “progressive “diseases COPD/ emphysema, COPD/bronchitis seems to be the most personal of all in that all the stories I read are both all similar yet all very individual. I am always interested in everyone’s personal battles and their progression or lack there of and how and why they have remained in their stages or fell swiftly from stage to stage.

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megannell

" Hello to you RedSox.. what an interesting question you've asked.. I was one the unfortunate ones who was diagnosed 4 years ago with" cage bird lung diease" I was a Veterinary Surgeon. Working with many types of birds and animals." I also was diagnosed with asthma and emphasemia..my first spiromiter result was 37..I managed to get my lung function increased to 44..I was doing realy well and with a very posative Attitude ..BUT all that was about to change for me... I found my twin sister dying on her sofa.. her sats where so low just 20% and she was very unresponsive. Then I lost my two border collies with Noah. A stroke... Nell cancer ...The sadness and stress of so many sudden loses realy took it's tole on me. My fav results now are 26.. with my health declining moment by moment. I am now STERIOD dependent..I am type 2 diabetes..I am grossly underweight at 5 stone some think. So all the stress's and sadness that's plagued me these last few 2 years ...So I'm more than convinced that stress is our biggest enamy. But! I don't give up easierly and I'm working so hard at trying to get back to we're I once was...sorry I've waffled on RedSokes..Keep asking the questions...Megan..."

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sassy59
sassy59
in reply to megannell

Keep fighting Megan. Xxx 😘

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megannell
megannell
in reply to sassy59

" Thank you Sassy. I really will keep fighting. I have my Cherie, and my big boy Rubin to help me through these times... I hope you and Pete are both keeping yourselves well..xxx Megan.."

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sassy59
sassy59
in reply to megannell

Doing well thank you Megan. Thinking of you. Xxxx

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RedSox
RedSox
in reply to megannell

Thank you Megan and you did not waffle on and your story is unique as we all are

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megannell
megannell
in reply to RedSox

" Thank you RedSox.. "

1 like
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Corin1950
Corin1950
in reply to megannell

Dear Megan

My heart goes out to you. You have had such a tough time. Hang on in there and try to eat well to give you more energy and strength. I know from my husband how easy it is to become deconditioned when you are having so much loss in your life.

I'm sending you my very best wishes and a big hug for Ruben

Corin

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megannell
megannell
in reply to Corin1950

" Thank you Corin.. your so kind..x Megan..."

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Corin1950
Corin1950
in reply to megannell

Keep in touch and let us know how you get on

X

1 like
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Katinka46
Katinka46
in reply to megannell

Dear Megannell

So glad to hear from. You are amazing. So many losses, too too much for anyone to bear but you are still here, bless you.

Love and hugs

Kate xxx

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megannell
megannell
in reply to Katinka46

" Thank you Kate. I will never give in to this COPD... and all that it brings with it. You take care too Kate...Megan...."

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Caspiana
Caspiana
in reply to megannell

*Hug* It's been so very rough for you Meg. We must just keep putting one foot in front of the other. Thinking of you. xx 🍀

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caz2408
caz2408
in reply to megannell

I agree Hun bless you , stress clear alot !!! I had had copd for four years 28% lung function , September 2015 flew home from Turkey and within 3days went downhill with a bang !!! Ended up in hospital 5 times in less than 12 months nearly died twice, but the worst I was when my son died I totally cracked mentally, physically and emotionally , worst time of my life !! But I am after two years back up the ladder a bit , and I believe with the help off my son xx. I am on oxygen 16 hours a day , bipap machine nightime, have to use my walker more ,as I have spine problems too, but hey I am still here for my family and try to stay positive all the time , laughing , joking and playing silly devils !!!! I love making people laugh best medicine going !!!! It's a horrible disease guys but we can beat it !!!! Bless you all xxxx

3 likes
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flicky1
flicky1
in reply to megannell

I think it was stress, trying to cope with too much and grief that changed me from someone who had no symptoms to a rapid decline into emphysema. Specialist put it down to my age - 59 at the time.

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Susan1200
Susan1200
in reply to megannell

So very very sad 😪 never ever give up, lots of love and hugs.

1 like
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Sjf129903
Sjf129903
in reply to megannell

I have the same issues and at end stage 4 and finding almost weekly there is something new to add on to my progression it's horrible and I too beleive it's the stress we are all individual's leading the same battle differently but still the same

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jackdup
jackdup
in reply to megannell

I’m so very sorry to read all you have been through this past couple of years and am sure the stress of it all is definitely a big contributor to you current health. I really hope and pray you can recover at least to some degree.

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hypercat54

Great post and got me thinking too. I credit my still being mild despite being a heavy smoker for 44 years and only giving up last year to some good lung genes as well as bad. in other words I have been very lucky as others could have passed from that by now.

I don't have a very healthy lifestyle either but I do still get myself out to follow my hobbies, see friends, and laugh as much as possible.

Maybe what's also helped is moving out from London (before my diagnosis) to the seaside, and losing my last job at 56. So I am breathing much cleaner air and am less tired and stressed trying to make a living. x

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RedSox
RedSox
in reply to hypercat54

hypercat54 The laughing part is the key

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hypercat54
hypercat54
in reply to RedSox

I am sure you are right. I have just spent 2 hours playing cards in a weekly group and my goodness we didn't stop taking the micky out of each other and laughing as usual. I also won which was good :) x

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RedSox

Wow just met an older gentleman at the walking park (old golf course with subtle hills galore) he said he was 81 and suffers from COPD (he was dx in 1992 with moderate) he does get breathless but hasn’t lost a step only rescue inhaler and he said his lung deteriorating at close to normal . That’s 26 years since diagnosed. God bless him !

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casper99

That's so encouraging Redsox.

A large survey done to find out the average life span with COPD and it was 82/83.

I think the key is trying to avoid getting severe chest infections ect... By acting fast when they start, trying to keep moving and avoiding bugs.

Luck, plays it's part too. xx

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RedSox
RedSox
in reply to casper99

Very true casper99 wish I could find that large survey ! and yes to the luck factor

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casper99

I'll have a look for it xx

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RedSox
RedSox
in reply to casper99

Thank you so much !

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Hidden
Hidden

My father died at 82 of COPD but never made any concessions to his illness. He didn't exercise, ate what he liked and carried on smoking until the end! Shame he didn't change his lifestyle as I'm sure he'd still be going strong at 89 now if he had!

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RedSox
RedSox
in reply to Hidden

Wow God Bless your father you said he had COPD Was it Bronchitis ? Bronchiectasis? Emphysema? Fibrosis ? Or did he have another condition

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Hidden
Hidden
in reply to RedSox

He had both bronchitis and emphysema. He had trouble with hills for years but was active until the last few months.

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donut43

The thing is to never give up, keep thinking positive keep in touch with the GP Resp team and all those who help you. Yes it does progressively get worse and one has to adapt to new circumstances with new hobbies interests and new ways to keep working .

Dan

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casey16gatsby

Thanks RedSox -- reading these posts is inspirational!

All the Best!

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Blayney

Ah great to find someone else fascinated by the progress of Emphysema. I am so interested as o gave up smoking 22 years ago and was diagnosed with Emphysema two years ago. It appears even though I gave up smoking years ago my Emphysema is progressing quite rapidly. In the two years I am losing about 10% lung function every year. I am now down to 50% and if it continues at this rate I don’t have a good prognosis. The specialist is baffled at the rapid deterioration and actually feels sorry for me. Border line Alpha1 and Mother and Aunty died of Emphysema ( both smoked till the end and died at 74 y/o) I am 62 and doubt I will get to 70 with this progress. Praying for a miracle to slow this down. Weird how everyone cases are so different with the same disease.

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RedSox
RedSox
in reply to Blayney

Hi Blayne so as I see it you were diagnosed only 2 years ago at 60 years old after quitting 22 years ( at age 38) and when diagnosed 2 years ago were you moderate? Mild ? Severe? What were the circumstances that led to your diagnosis? Were you sick ? Sorry for so may questions but your deteriorating condition is rather fast as to prove my point how fickle it is ! In the meantime please take care and God bless

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lovableme
lovableme
in reply to Blayney

Truely is an inspiration to read your stories for me it gives me hope im 54 with severe c.o.p.d never smoked in my life im alpha one antitrypsin defienceny unlucky just as its in the genes. I started been breathless around 38years just kept going with blue inhaler got worse and at 45years was told I had moderate c.o.p.d tested me for alpha one and im zz my mother died at 58 emphasemia he was never tested for alpha one she smoked had emphaemia age 37.I think and hope because I dont smoke I can prolong my life just reading all your stories have giving me hope making me stronger and im ready now to start winning and beating this as long as I can loving all your stories and hope you all have a long life .tyvmx

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Blayney

Thank you for replying. I was diagnosed as moderate. I had been coughing for about four years prior to being diagnosed. I had Visited the GP and been fobbed off with antibiotics and almost made feel that I was a time waster. I finally asked for X-rays to rule out anything sinister. The first lot of X-rays did reveal problems it was recommended I have CT scans but for some reason the GP chose to tell me all was well and gave me more antibiotics. Changed GPs and got more X-rays and HD scan which revealed Emphysema. Off to Pulmonary Specialist who confirmed moderate Emphysema. At that stage I think they thought I would remain stable as I had not smoked for 20 years but two years on I am deteriorating fairly rapidly.

The specialist immediately thought I had Alpha 1 but only showing border line Alpha 1. Interestingly it runs very strongly on my Mother’s side of family with generations dying of lung diseases. I feel I have some genetic factors.

Ask any questions you wish as I really enjoy helping out. I am always interested in comparing everyone like you. But I think the bottom line is that most of us seem to be on a one way street.

Love your posts and thank you for raising some great questions

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RedSox
RedSox
in reply to Blayney

So grateful for your prompt reply as well I am so fascinated with this whole progression thing since meeting an 81 year old gent yesterday who said he has had it mild for so many years. I find that much of this whole COPD thing is the most personal disease I’ve read about just listening to folks on this forum proves that.Unfortunately many of the older newbie “Mild” posters have left the forum which is too bad as their comments would have been quite revealing . The good news is maybe their progression is so mining they live their lives and move on

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Blayney

I feel the common denominator with those who don’t progress to the next stage is that they are mild when diagnosed and the medication has kept them at that stage. Those lucky people then just move on with their lives not worrying too much about it and therefore having no need for the Forum. Perhaps it is only those who are moderate and beyond who love the support of this great group and hunger for any information available. Love reading the posts. Living in Western Australia we have a different medical system here. If you pay for medical insurance we have fairly easy access to specialists etc. I now have a great medical team but sadly they are all baffled by the speed of my deterioration, ordering all sorts of tests hoping to find some other factor involved. There is now a blood specialist involved but nothing found yet. Often I hope that it will suddenly stop where it is. Feeling blessed to still be able to live an active life and have wonderful support, including this fabulous group. We don’t have anything like this in WA that I am aware of. Sometimes I think all the doom and gloomy Armageddon type predictions Google give us about rapid deterioration may be right as I am doing what they say. Fingers crossed I suddenly stop half way along this slippery dip.

Sorry to sound so gloomy and I hope to read lists of positive replies proving I am an exception to the rule.

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RedSox
RedSox
in reply to Blayney

I do hope things work out for both you and your team . Just an anecdote to your reply many if not mostly all who are diagnosed mild are not even given medication at all other than a rescue inhaler (used only when needed) and if wise they immediately quit smoking and that’s it . This is why your particular situation is odd in that you had already quit long before which leads me to believe ( I am NOT a physician) that your Alpha 1 borderline may be the culprit but that is for your team to determine

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RedSox
RedSox
in reply to Blayney

Please try to be more positive Blayney I know this is not a religious forum but being raised under my Catholic guilt trip I can tell you St Bernadette is the Patron saint of lung disease and I believe she listens

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Blayney
Blayney
in reply to RedSox

Will do. Thank you

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challny

OK, here goes my story. I'm 66, was diagnosed in late 2016. Seemed like it hit me overnight, but looking back there had been signs for many years. I distinctly remember the first moment I felt breathless. I was about 35 and still smoking. But breathless incidents were very episodic. They wouldn't last. At around age 40 I went to a doctor complaining of shortness of breath. She thought I was crazy. At 42 I quit smoking and expected that I would start feeling better, but I really didn't. But I still didn't really feel terrible, and certainly not all the time. For about the next 10 years I would feel lousy every now and then. Then, starting about age 52 I started feeling really good and thought I'd dodged a bullet. At 64, though, it suddenly came on for real and I was diagnosed with emphysema/asthma. My pulmonologist classified me as "moderate" and gave me 3 inhalers. I just saw her last week and she said I was mild/moderate, but would do another breathing test in a couple of months. I blew 71 percent FEV1 back in February. In my case, sometimes I can feel pretty decent and sometimes pretty lousy. I have tried to up my exercise and do it pretty regularly. Play golf a couple of times a week, go to the gym a couple of times, still mow the lawn, walk to dogs. But if I get any worse, I know it will be hard to handle. All of my docs think I have extreme anxiety over my condition. Here's something uplifting, though. I sometimes play golf with this guy who is 84. Now, I live on the U.S.Gulf Coast, where it is very hot with extreme humidity. I'm talking to this guy the other day and he tells me has emphysema. I was shocked. I mean, he's 84, he looks great and he plays golf all the time. I asked him what inhalers he uses and he says he has one but doesn't use it because "they will rot your teeth." Also, my father told me shortly before his recent death at age 92 that he had been diagnosed years ago with emphysema. He also said he had an inhaler but seldom used it. I scratched my head. Who knows with this crap????

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RedSox
RedSox
in reply to challny

Challny I believe everyone and I mean everyone should read your post . It truly is the poster child reply to the fact that everyone is different. You story is an inspiration and the 84 year old is remarkable. It proves you must live each day to its fullest. I also live in the US (Middle Atlantic) Thank you and God bless !

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Bgilpin1

I have to post to this forum even though I personally do not have the disease. My husband smoked for 52 years before quitting at age 66. He has been diagnosed with COPD. He would become breathless with activity but he continued to work around our acreage, goes to water aerobics three mornings a week. He has a C-Pap and Oxygen at night, seldom uses an inhaler or nebulizer and takes no medications for his COPD. He has never had a hospitalization. Recently he went on a keto diet, lost 25 pounds and is breathless much less often than before. Not sure if he has good genes or what his lung function is, but he is determined to go on about his life and continue to do things every day. He inspires me.

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Clamdigger
Clamdigger
in reply to Bgilpin1

I have started a keto diet some people say wheat can cause many things one is acid reflux that cause lung problems and asthma that cause lung problems..

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Clamdigger

I find it interesting to I had allergies that turned to asthma that turn to small airway disease just found out I have COPD... Didn't know that could happen ..

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RedSox
RedSox
in reply to Clamdigger

Read my recent post on SAD (Small Airway Disease) it is not as well known as the more prevalent lung diseases

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