3 weeks ago I was diagnosed with emph... - British Lung Foun...

British Lung Foundation
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3 weeks ago I was diagnosed with emphysema copd

Finditmax
Finditmax
139 Replies

I was expecting something as I had been coughing and breathless for over a year, I have worked out from the report that was sent to me and the doctor that I am bordering stage 2, but because the specialist told me that I could last another 30 years when my wife was with me and my daughter google doctored and it says I can live a normal life, they are now treating me as it is like a cold that I will get over it, I stopped smoking immediately, not touched one since and have followed the rules. Has any others of you been given the look as your fine, you’ll get over it, as in the phrase ”man up” not understanding what I am going through, as like it is just a chest infection...?

139 Replies
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Andy56

I got told 3 years ago i had emphysema after a random ct scan and stopped smoking straight away but it's progressed so not sure it helped that much to be honest i would start again and the only reason i don't is because of my acid reflux which is bad.

But my doctrs are the same just say get on with it they never show me any help.

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Vonnie50
Vonnie50
in reply to Andy56

Really already sad to hear this. I think dr and hospital give no advice or anything at all

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Andy56
Andy56
in reply to Vonnie50

Doctors and the NHS are rubbish i think.

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Finditmax
Finditmax
in reply to Andy56

Ye, no support just diagnosis...then it’s down to you

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Vonnie50
Vonnie50
in reply to Andy56

Why do you think you have progressed ?

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Andy56
Andy56
in reply to Vonnie50

Because my lung function has got worse.

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Vonnie50
Vonnie50
in reply to Andy56

Have they given you any indication as to why?

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Andy56
Andy56
in reply to Vonnie50

will private message you because this is not my post

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Vonnie50
Vonnie50
in reply to Andy56

Ok

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Albertdog
Albertdog
in reply to Hidden

I was referring to the fact that regardless of government we cannot have everything we want without paying for it i.e.: mental health - sex cahanges - abortions - breast enlargements- cancers - alchohol - etc etc etc everyone has their own pet requirements and Asthma/COPD which is what I have is another one. Yes we can knock governments for not providing enough funding but where do you want to take it from ? ... defence - schools - police etc: or do you prefer to increase taxes. To answer these problems is politics which should have no room on this site.

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Finditmax
Finditmax
in reply to Andy56

I know, you hear about all this support, but where, we just need some help with this..

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Tia4209
Tia4209
in reply to Finditmax

Does your surgery have a respiratory nurse that can advise you and sort out an action plan or any meds that you need.

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robert1957
robert1957
in reply to Andy56

Hello Andy please look at drinking celery juice first thing in the morning to help your reflux

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Oshgosh

You need to contact your local respiratory team.

Get your GP to refer you to pulmonary rehab.

It seems a bit boring,

You get some exercise ( supervised closely)

Then an hour of education,

The education was really good.it COVER allaspects of COPD.

AS were both retired my husband used to come in for the education bit,he said he needed to know about it.

I got onto pulmonary rehab quite quickly,I believe in some areas te waiting list is longer.

This forum is really useful.ifyou post a query,usually someone has an answer.

Don’t be frightened of going to your GPto get sorted out.

There’s a lot of help available out there

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Finditmax
Finditmax
in reply to Oshgosh

Tried yesterday at the surgery, they said if you get worse ring 111 or 999 if it is serious, tried to make appointment to get information and help with my breathing as it is getting works, they said I can book a 10 day appointment as there are no spaces or get a ring back if it is serious, why the hell should I care if the support I need doesn’t, what’s the point..

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peege
peege
in reply to Finditmax

The point is your life.

The quality of your life and your future.

There are many many people here who improve their condition with ceasing smoking (bear in mind if you've poisoned your system for many years it isn't going to recover overnight), healthy weight, healthy diet and exercise.

If your family aren't taking your health seriously then it's up to you I'm afraid. They might be more supportive if they see you making an effort. One day they'll understand - you could ask them to put a straw in their mouths, breath through it while climbing the stairs & explain this is what if feels like for you.

You've made a start in self help by coming here. P

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Roysieboy
Roysieboy
in reply to Oshgosh

Hello Oshkosh. I really agree wholeheartedly with u about pulmonary rehab. Where I live u get 6 weeks on NHS then u can go onto pulmonary rehab maintenance classes. I have been going to maintenance classes for 2 years now. We have to pay for these sessions, 1 hour a week and it is all based on exercise. I feel better for it. You meet some very nice people there and the people who run it have always got time for you. Well worth going in my opinion. 👍🤓

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skischool

Not quite sure what you expect from your Gp?to a certain degree we all have to 'Man Up' as you say,take the diagnosis and advice on how to live a healthy life to limit the progression of our lung damage to a certain degree and just get on with our lives,it's when you get to the stage that doctors say that no amount of healthy living is going to extend your life that much that you really need to worry. :)

Don't mean to sound dismissive but the medical fraternity can only do so much then it is up to us to live as long and healthy and happy a life as we can.

Best wishes Ski's and Scruff's

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Finditmax

All I want from the GP is what to do now, I have not heard anything or been told anything, or what to do since I got diagnosed 3 weeks ago, so a little bit in limbo, not sure about anything, the man up thing I can understand (I’m ex forces) just need things explained..and maybe some medication to help..but very hard to get doctors appointment in my town

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skischool
skischool
in reply to Finditmax
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Hidden
Hidden
in reply to Finditmax

For the valuable links given read nhs the outcome section over and over which shows we are all different with copd

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Caspiana
Caspiana
in reply to Finditmax

Hello Finditmax and welcome. 👋😊

I do understand your frustration but the "Why the h** should I care" attitude will get you nowhere. In fact it is more detrimental to you than the lack of advice from your GP. As Skis says , initiative on our part is what is really important. If you read on this site you will see many people have fought to get to and continue pulmonary rehab. Watch your diet like a hawk. And no matter how hard it is EXERCISE. Walk as much as you can. Don't be bitter. Be proactive. If you are bordering on stage two (mild) I think you are fortunate to have caught it early. Take any medication as prescribed and look after yourself.

Best wishes,

Cas xx 🙋

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Hidden
Hidden

Why should you man up dont care what stage you are at you do need support once you got it then you can plan...for example you dr should give you a copd plan so you know what to do if you have a flare..a rescue pack. My dr did the same with me and I had a melt down.

And it is knowing what are my options later on and now

Because I am still struggling to work my family was present with a consultant who said I woukdnt get any worse so they couldn't understand why I am the way I am

Wish you all the luck in the word and stage 1 and 2 isnt a walk in the park at all breathlessness is horrendous and scary

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Finditmax
Finditmax
in reply to Hidden

Thank you..

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Hidden
Hidden
in reply to Finditmax

No thanks required

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Danielmystar

Hi finditmax sounds like Emily61 thinks the way i think about it all you did right to stop smoking i stopped about 3 years ago maybe more than that im glad i stopped as not sure how bad i would be if i didnt stop i was diginosed over 15 years ago yes it has got alot worse but i try excersies daily only 20 minutes as i for me its enough sometimes i only do them 5 times a week i learnt them from pulmonary rehab but yes being breathless is worrying make sure you get the medication you need inhalers best for me with chamber but as for seeing a dr im same in my area im in lancaster/morecambe very hard to see a dr even with the app on my fone good luck with a dr please let us know how you get on when you manage to see dr take care .

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hypercat54

Hi I got the same treatment as you when I was diagnosed with stage 1. I found this site and immediately joined. Most of what I know I learned on here.

I guess in a way it is comforting when a doctor isn't too concerned coz that means we aren't seriously ill or anything. x

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robert1957

Lol the graveyards are full of people there doctors thought they were not ill

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robert1957

It’s says on spike Milligan’s gravestone (in

Irish). I told you I was sick

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jackdup

Some time ago I read an article that said when they trained paramedics they would put a nose clip on like you do when have a spirometry or PFT and then give them a straw and they have to go up and down stairs a few times only breathing through the straw so they get an idea what someone with COPD goes through with their breathing. For those that think it is nothing maybe have them try that so they get an idea what it is like.

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Munich
Munich
in reply to jackdup

The docs should also do it, and they might stop being so cavalier about our dx! They should also do a sleep clinic study!

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Danielmystar

Agree

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Danielmystar

I agree

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peege
peege
in reply to jackdup

Same goes for we asthmatics too

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jackdup
jackdup
in reply to peege

That’s true. I don’t have asthma but my Grandmother did and I remember her struggles many years ago.

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Gladwyn
Gladwyn
in reply to jackdup

Respiratory nurses do too. .... mine did so I'm assuming they all do in their training courses. 🤔

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robert1957

Hello Finditmax please look at magnesium deficiency and symptoms of magnesium deficiency also vitamins d3 k2mk7 also research vitamins b12 adenosylcobalamin and

Methylcobalamin if you can get these vitamins and minerals in your food great but due to soil depletion it’s not in our fruits and vegetables as it was years ago look at the different forms of magnesium and select the one that is best for you if you can reduce dairy fats and increase fruit and vegetables keep hydrated (lemon water good luck

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Munich

I use Spiriva, and my coughing has lessened dramatically! I am in the US, so I don’t know if it is available to you. I order from Canada for better price.

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Durcot
Durcot
in reply to Munich

Yes I also use Spiriva and also Symbicort. I feel much better.

I to am in the states, really dont understand what the other countries use. I'm a Veteran so I get my inhalers etc at a co pay price. I also have a great VA doctor that cares, that makes a difference.

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Janzo54

Sorry to hear you thrown in deep end and told to swim! There are so many diagnosed with COPD now that the NHS and doctors cant cope.

Some great advice on here and support too.

I think the best thing in early stages is healthy diet, quit smoking, walking every day. If you can then swimming is really good too. Having periods of rest and tranquility essential during flare ups. Consistency with all medications and being supported by those that really understand the condition.

Take care,

Janzo

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garshe
garshe
in reply to Janzo54

COPD is not terminal but it is progressive. It's up to you how slow or fast the progression is. Diet and exercise and of course stop smoking. We all react differently . Goof Luck.

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Munich
Munich
in reply to garshe

I was told I will die from my COPD and not MAC or Bronchiectasis. I have known people who died from it.

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garshe
garshe
in reply to Munich

I said it was progressive not terminal . I was diagnosed 10yrs ago severe COPD but still here. You control how fast it progresses by diet exercise and most of all by being Positive.

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garshe
garshe
in reply to Munich

You seem to have the wrong attitude already unfortunately.

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Munich
Munich
in reply to garshe

No, because it is terminal! I now have mild, so it may be quite a few years to progress, but it is a terminal disease!🤢

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garshe
garshe
in reply to Munich

You are wrong but you believe what you want. You are a very negative person wheras I am a Positive person. This is why I have controlled the progression of my condition. No one is guaranteed tomorrow but COPD is treatable which can slow the progression down. Please try and be a bit more Positive and this will stop you from worrying about what may never happen. You could die from something else before it got to the stage you are describing.It is frightening when you are first diagnosed but I am fortunate to have a wonderful Consultant and team of Respiritory nurses who like myself believe in Positivity. My Consultant is amazed and has said there are many with a higher lung function than myself on 24/7 oxygen and in a wheelchair. I myself get out and about every day and lead an active life without oxygen .Go into my page and see a photo of myself at 75yrs young which I posted a few weeks ago. It's all about Positivity. Sheila.

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Munich
Munich
in reply to garshe

The fact is it will be increasingly difficult for us to breathe.

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garshe
garshe
in reply to Munich

There are some on here who are living with COPD for 20 to 30yrs. Why are you worrying about it now. You are only Mild ,most probably dont even need medication. There are some only just being diagnosed please dont give this impression to them as you are being ridiculous. With your attitude you will deteriorate much faster believe me. .You can increase your lung function by exercises . I increased mine and so have others. Please you are being so negative and what you are saying is not true. Most of us on here have been living with COPD for a long time and still enjoying life. You have just been diagnosed if you are not going to listen to the advice given then there is no more to say. I really wish you well and hope you will go on a PR course and see how much it will help you. Although I think you are not advanced enough for this course. Good luck to you .

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Dog12
Dog12
in reply to garshe

What a breath of fresh air you are Shiela. You have helped me through many a hard time in the past and I'm so glad to know you. Well done in speaking up for us all here. Xx Maz

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garshe
garshe
in reply to Dog12

Thanks Maz. I was a little upset at the way Munich has replied to me. I was trying to help FINDITMAX who wrote the post but this person interrupted. I then thought I was replying to FINDITMAX trying to reassure him as only just diagnosed. As you know I am not an argumentative person. Thank you for your kind words I really appreciate what you said Thanks again.xxSheila.

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Dog12
Dog12
in reply to garshe

You take care xxx you are one of the good guys on this site and don't forget it xx Maz

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garshe
garshe
in reply to Dog12

Thanks again Maz. As you know I am here anytime you need to chat. Privately if you wish. I wish you health and Happiness for 2020.xx💕💕

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Munich
Munich
in reply to garshe

I’m not on this site looking for advice. I am looking for information. You missed reading that I use Spiriva and Albuterol. I attended Pulmonary Rehab September 2019. I didn’t wait until my COPD got really bad. I exercise, and in Fall 2019, my lung function increased 17%. I stopped smoking in 2001, and only eat fish, chicken and lots of dark green veggies. COPD gave me Bronchiectasis and I have to try to avoid infections by wearing masks, etc. There is nothing else that I can do for my COPD. My focus is on my other diseases that I can actively improve.

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garshe
garshe
in reply to Munich

As I explained I thought I was replying to FINDITMAX . You are obviously not in UK so have different ideas. I wish you well.

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Munich
Munich
in reply to garshe

I don’t think there is a UK COPD and a US COPD! Same disease, eh? Perhaps the US docs and nurses say it like it is rather than making us feel good. What started this discussion was that I posted I was told by three Pulmonary docs and an ID doc that I will die from COPD and not my two other lung diseases! I didn’t realize that other COPD patients haven’t been told their prognosis.

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peege
peege
in reply to Munich

That's not the kind of information we're given in the uk

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Munich
Munich
in reply to peege

What a shame! We believe in honesty and reality!

Also, the only thing stressed on here for COPD is positive thinking, exercise and diet. Don’t any of you wear masks? Chemical odors are deadly for us. It further damages our lungs! I wear one when I go to a hair or nail salon. Some ingredients include formaldehyde! Construction workers and people fixing up their homes wear masks to protect their lungs from dust, chemical smells, etc.! Research N95, N99 and the WWII type masks! The N95 protects you from 95% of the minute particles in the air. N99% protects you from 99%. But they caution that with COPD, it is more difficult for us to breathe. But it protects us!

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Hanne62
Hanne62
in reply to Munich

Sorry but you clearly are very ill-informed about the UK healthcare system, and seemingly the Canadian one also.

Depending on the lung condition, some patients will be managed by their General Practitioner (a qualified doctor with a minimum of 8 years’ training), assisted by specialist nurses who have training in COPD, asthma etc. Most will also see a Respiratory Consultant who is a specialist doctor with usually a minimum of 12 years’ training. Those with less common or complex conditions eg bronchiectasis will usually see a Respiratory Consultant who has had further training & experience to specialise in bronchiectasis

May I suggest you stop sounding off about things and maybe practise listening to others a little more?

Oh and yes, we do like to be courteous here. It’s nothing to do with it being a British site and more about being civilised. I’m sure most Americans value courtesy as much as we do

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Munich
Munich
in reply to Hanne62

I do listen to others a lot on this site. Before criticizing my informed remarks, you should listen to the comments on this British site, and find a friend in Canada to tell you about their dreadful healthcare! I have read the comments on this site about not being able to see a doctor even if they are very ill. They seem to only see nurses. They can’t get in to see their GP.👩‍🔬 They are on a waitlist to see their consultant. 👩‍🔬And if they do see a doc, there is a limit of ten minutes. They say there is a terrible shortage of docs. Canada has the same problem. I have a specialized eye doctor who left the Canadian healthcare system along with his wife and 8 children! He wasn’t allowed to help very ill patients because of the shortage of docs, insurance denials, and many restrictions imposed on the docs’ care to be given to patients, along with many other issues.

My family is in Canada. American health insurance companies have a site just for Canadians. They buy US health insurance so that they don’t have to wait for hip replacement surgery for three years as my cousin had to wait.

Many of our informed US docs here do not worry about courteousness when it comes to being honest and blunt with a patient about their health prognosis. We need to know our prognosis!

I have tried to listen to people on here, but the main thing you do on here is pump each other up about positivity. I already watch my diet and exercise, so I haven’t learned anything here. I have just posted about wearing masks but you haven’t commented on these at all. 😷 You are just commenting on your feelings being bruised with criticisms of the UK healthcare system. Many UK citizens on here complain about this, but it evidently really hurts when you receive criticisms from a US citizen!😪

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Hanne62
Hanne62
in reply to Munich

My feelings are not bruised at all, Munich. I just pointed out you’re wrong to say we never see a dr, only nurses or consultants. You obviously didn’t know that consultants are specialist doctors.

Yes we complain a lot, that’s the nature of a forum like this. And some here do receive inadequate treatment, no doubt about that. But US citizens complain about your insurance-based system too, especially those who cannot afford the premiums or who have exhausted their policy’s annual drug allowance. The main advantage of our system is that no-one is ever turned away from a UK medical practice or hospital because they cannot afford to pay the bill or are uninsured.

As to masks, I’m vulnerable to infection & have looked into this but prefer not to wear one. I’m not convinced they’re effective enough to compensate for the discomfort & oddness. If another serious respiratory virus such as SARS comes along, I might change my mind.

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Munich
Munich
in reply to Hanne62

Ah, they sure protected the Brits during WWII!

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Hanne62
Hanne62
in reply to Munich

Masks? I don’t understand

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Munich
Munich
in reply to Hanne62

See a movie about WWII, and you will see the gas masks that the citizens of the UK wore. Ugly but effective. They are still worn toda!

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Hanne62
Hanne62
in reply to Hidden

Hi Munich. You’ve posted your missive as a reply to me, and then also to peege and garshe whereas I presume you meant to send it to HU

As Hoobs says below, you can just leave. You don’t seem to be gaining much from membership of the site, and indeed you won’t if you’re just expecting people to agree with you all the time

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Munich
Munich
in reply to Hanne62

I never said that they could never see a doc! Keep up on the US news if you are going to criticize the US. We have Obama Care, so we can see docs! No one exhausts their drug allowance. They go into a higher cost area. Perhaps never being turned away for payment but waiting 6-12 months to see the doc is no great solution. For updated info on appropriate COPD info and care, see the American lung association website lung.org. Research how serious chemical odors are for COPD. THEY ARE DEADLY FOR US. THEY DESTROY OUR LUNGS! Use a WWII-type mask! That should convince you that a mask is effective!😷😷😷

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Hanne62
Hanne62
in reply to Munich

I think I’ll leave it there, Munich. I’m finding you rather hostile. Good luck to you anyway.

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peege
peege
in reply to Hanne62

Well said H xx

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Munich
Munich
in reply to Hanne62

Only because you can’t dispute what I have said! But be sure to wear the mask your ancestors wore in the attacks during WWII! It will protect you from further destruction of your lungs! Good luck with your lungs!

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Munich
Munich
in reply to Hanne62

You might think I am being sarcastic about using the WWII masks 😷. I am not, since they are recommended for women with COPD going to hair salons 💇‍♀️and nail salons💅. In fact, in some salons, the hairdresser and customer are give WWII type masks to wear when they have a Brazil treatment done because some still contain formaldehyde! And hair dye and bleaching have noxious odors. Nail polish and removers are notorious for odors with some still containing formaldehyde. I no longer have my nails or pedicures done, and go to the hair salon for the first appointment of the day when no one is having color treatments. I do wear a N95 mask to protect me from mild odors. Read abstracts and articles about protecting your lungs. Don’t just rely on positivity, diet and exercise. Chemical smells destroy our lung tissue. People have had to leave jobs to protect their lungs! Car repair shops, some factories, paint shops, hair salons, nail salons, cleaning houses🧹🏠, and many others cannot be tolerated by people with COPD because of the noxious fumes!

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garshe
garshe
in reply to Munich

I am fortunate to have a supportive family. My husband and 2 daughters my daughters have read up on this disease and I have taken Turmeric, Chlorella and Spirulina also eat lots of fish and green Veg.. my diet is excellent . Just be Positive I was diagnosed Severe 10yrs ago and still severe abd still very active . I dont rush around but at 75 yes young I wouldn't be rushing anyway. Our lungs deteriorate from the age of 27 yrs old so even if we didn't have COPD we still would lose lung function. I really wish you good luck and be grateful for every single day .there are many worse off believe me .

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Munich
Munich
in reply to garshe

It seems that you worry about COPD a lot! Perhaps it is luckily your only lung disease? You take supplements and fuss about what you eat, etc. Last Fall, my lung function improved 17%! I no longer have hypertension. I stopped smoking in 2001, and since then, I only eat fish, chicken and lots of dark greens. We use exercise equipment in our home. Actually COPD is not my biggest concern. It is down on my list. I can’t do anything about it. I am realistic and know that my breathing ability will decrease. You are lucky if you don’t have my other two lung diseases. I have to wear masks to go to a movie, stores, planes, etc., purify my water, avoid steam and showers, lung infections and pneumonia! I will have another CT scan on Friday to see if my diseases have progressed or if I have any new infections. To treat MAC (mycobacterium avium complex that is a non-contagious form of TB) it is a regimen of 3 toxic drugs that are used to treat TB possibly for years! I hope that I won’t have to take the drugs! I too look young for 72.

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RedSox
RedSox
in reply to Munich

Wasn’t you who only 11 hours ago replied to Garshe that COPD is terminal and all doom and gloom ? It’s almost as if two different people with two different opinions. In one reply you are negative and now you are very positive. Mixed signals or I’m not reading correctly?

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Munich
Munich
in reply to RedSox

I would say it is reality and not doom and gloom!

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RedSox
RedSox
in reply to Munich

Whatever !

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garshe
garshe
in reply to RedSox

He has totally confused me. I thought I was advising FINDITMAX who put the post up. I was trying to reassure him as only just diagnosed. Unfortunately Munich got in and I was then replying to him thinking it was FINDITMAX. Lol. Quite funny really but I now know why the replies were a little aggressive. Sorted now hopefully. X Sheila

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garshe
garshe
in reply to Munich

I realise now I am not answering FINDITMAX who put the post up. I really thought I was replying to him. I wanted to put his mind at rest as just diagnosed. I don't know about your diagnosis and fobt really want to get involved. No I do not worry or play on my condition .in fact only my family know I have COPD as I dont want anyone knowing. I prefer to be envied than pitied and my supplements are fir my health in general . Both my daughters take them also as we always have eaten healthily. I would like to give positive advice to FINDITMAX so he will not worry as much . And yes COPD is my one and only illness and thankfully I manage it well. My apologies if you have a lot more to contend with and I am not qualified to advise you. I was advising FINDITMAX as I can comment on COPD .sorry for all your problems . I wish you health and Happiness for 2020.

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RedSox
RedSox
in reply to garshe

Well said Garshe it is progressive it is NOT terminal and yes it is treatable. Stay positive. Positivity is the key . Don’t let anyone tell you different

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Caspiana
Caspiana
in reply to Hidden

Hello Munich. 👋😊

I'm terribly sorry to intrude on this conversation. I hope you don't find me impertinent. But this conversation had me thinking. I also have lung disease, plus three autoimmune disorders. I am very aware that I may die from my lungs giving in, rejection or infection. But nothing changes the fact that I will succumb , like all living things. Nature will always take back it's own.

No matter what we may die of, everyone will struggle to breathe as the body shuts down at the end of it's life, organ by organ, blood cell by blood cell. That is just how life ends. COPD or no COPD. There is no escaping the increased labour in breathing at the end of life. I know because I have cared for my own family members until they passed. It is not like in the films, one minute you are whispering good-byes, then your head falls to the pillow and you're gone, I'm afraid it's not that way at all. Just like labour in birth, we all labour to die. Very few exceptions. Lung disease or no lung disease.

However, I, like many others will not dwell on that inevitable outcome. I will put my energy into life and living.

My point is we all have our views on dying and how it will be. We also have a choice to accept it with grace.

Best wishes,

Cas xx

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Hacienda
Hacienda
in reply to Caspiana

Dear Buddy, you make your contribution to this ongoing Opinion from one "Angry" Contributor in a Calm & Polite Way, as you have always Voiced very calmly on this Forum for all of us. Thank You. I do hope He/She ? will accept That we are All "Suffering" with Lung Diseases & do not have to succumb to their indifferences. Especially when we are here to help everyone who Joins for the care & Compassion they need. I do hope garshe is back to her Beautiful Caring Self as all these Comments it seems, where directed at her. I Bid you A Good Morning Dear Cas, I do hope your having an "Up" day on this Friday . Lots of Love & Gentle Hugs Dear Friend. XXXX C.

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garshe
garshe
in reply to Hacienda

Thank you so much Hacienda, I was a little upset as was only trying to give some Positive advice. Unfortunately everything got out of hand. Everyone here on this forum is usually very pleasant and it surprised me to be confronted with such anger. The funny part is I really thought I was replying to FINDITMAX who posted the question., and I was trying to reassure him as he had only just been diagnosed with COPD and was very worried. We all feel like this at firstand I really was trying to help him.

It took me a while to realise it was someone else I was replying to who had replied to me and was Not FINDITMAX. In future I will check who I am replying to as I really was surprised at the way the discussion went. I can see the funny side now and the moral of the story is , check who you are replying to as I would have given up sooner had I realised it was not FINDITMAX. Lol We are usually a jolly lot on here and quite Positive so I hope FINDITMAX reads all these replies.

Wishing you a happy and healthy 2020. XSheila.

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Hacienda
Hacienda
in reply to garshe

Hi Sheila, You handled it all very well, I too could see who you were replying to F.Max. We have all at some point had comments that are not called for and it does leave a Bad taste, I am so glad you can Rise above it and now back to your Lovely Self. I am sure FMax will read all and the messages will help him. carry on being Happy Sheila & Very Thoughtful for your Forum family. Love n Hugs. C. XXXX

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garshe
garshe
in reply to Hacienda

Thanks Carolina. I still cant understand why I didn't realise it wasn't FINDITMAX lol. Should have realised when all the ailments came out. Hope FINDITMAX does read the Positive replies as it is so frightening when first diagnosed. Thank you for your kind words it has restored my faith in humanity. I was a little upset but ok now and wont let one person who seems very angry ruin my day. Have a lovely day. Sunshine here in Wales hope it's the same with you. xx Sheila.

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peege
peege
in reply to garshe

You've been very kind, patient, eloquent and knowledgeable in your replies Garshe. It is upsetting when one person is so unkind, rude and negative.

I'm wholeheartedly in support of you. I cannot believe how one person can seek to destroy a new members hope and plea for help. Fortunately members like that are rare.

Wishing you the very best 2020 xx Peege (I'll have to edit out one word a bit later when you've read this)!

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garshe
garshe
in reply to peege

Thank you so much Peege..I was contemplating not replying to anyone on this forum anymore after the angry abuse that was aimed at me from Munich. If you dont have hope and Positivity what do you have and it has helped me survive the last 10yrs since I was diagnosed. I have had lovely responses from you and others it has made me feel a lot better. I will never give anyone negative comments as my belief is "If you have nothing nice to say then dont say anything " Thank you once again and I wish you a happy and healthy 2020. X Sheila.

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garshe
garshe
in reply to Caspiana

Thank you Cas, you always have a wonderful way with words .I wish you and Chom a happy and healthy 2020.xx Sheila.

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garshe
garshe
in reply to RedSox

Thank you Redsox. Thank goodness someone else understands I was trying to help. Unfortunately some cant see this and are quite Negative and aggressive. Thank you again. x Sheila.

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Munich
Munich
in reply to garshe

I am not aggressive or negative. I am realistic and honest about this disease. I forgot that the Brits are most concerned about politeness!

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Caspiana
Caspiana
in reply to Munich

Thank you, we are indeed extremely concerned about politeness. 🤗

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beech

My GP’s surgery weren’t much help when I was first diagnosed, I think they just didn’t have the expertise nor interest. I read up on the internet and found this site a great help - I have since been able to request more suitable meds for my particular problems based on what I have learned, and can tick along.

It is disappointing not to get better help straight away, but I think that is luck of the draw. We now have a very pro-active Respiratory nurse at the practice who has gone through sorting out who is overdue a Consultant’s appointment, pulmonary rehab, medication reviews and education - truly a positive new broom, and a quick responder to queries or problems.

But apart from those medical points, a lot of what happens next is down to the individual to make the lifestyle changes to contribute to our own responsibility for our health. You can feel “what’s the point?” but you can also decide to work within your limitations to improve your lot.

I hope you find the BLF site as useful and supportive as I have - and there are trained nurses here you can talk to for more information if you feel it would help.

Ps - my family don’t really understand and get quite irritated with my slowness at walking, for example (I can’t scurry at speed to rush to an appointment as they might). I have to just tell them I’ll do it at my pace, and will catch up shortly. I do hate being slow, and I find their lack of empathy disappointing, but there it is. I fool them most of the time!

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hypercat54
hypercat54
in reply to beech

Yes my family and friends are quicker than me and I tell them I will catch up too. I find it hilarious when we are having a conversation and they get far enough in front so you end up shouting 😁 x

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Daffyduck84

My husband was diagnosed with pulmonary fibrosis two years ago we had to go home and google we were offered no support each time we saw consultant and my husband would say he felt worse mire breathless and fatigued he would just say well there’s no real change in your CT scans!! We then pushed to be referred to a more specialised hospital and on 15th Oct she confirmed what he’d always thought that it was asbestosis due to work history sadly after an exacerbation he past away on 4th November the speed in which this changed was dramatic but we are now waiting for inquest and biopsy results to confirm! Please don’t just sit back and accept what they say ?? And challenge if your not happy with the info they give you

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beech
beech
in reply to Daffyduck84

So sorry about your husband’s poor treatment at the hands of those who should know better, and for his quick decline and your loss. My father had asbestosis from his work in the Navy, and they were disappointingly useless 20 years ago. Sadly it seems to still be a neglected area - And the financial implications for employers are such that heads are kept low there too. Sending you best wishes for coping with the ongoing stresses of the inquest x

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Shazrab
Shazrab
in reply to Daffyduck84

I’m so very sorry to hear of your husbands passing , you must be so heart broken , my thoughts and prayers are with you x 🌹🌹

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Gladwyn
Gladwyn
in reply to Daffyduck84

I'm so sorry for your loss. Must be so hard for you. 🌾💐

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Fleurbaby

Nothing pisses me off more mate, than the people whom refuse to acknowledge the disease which is COPD!

It has totally ruined & destroyed my life!I am constantly trying to stay positive, whilst tempering my blogs on these sites!

I haven't been able to work for nearly 2yrs now. I seriously doubt that I will be able to work ever again.

I however, have changed everything in my life to compensate for the loss of my employment!

Mate, I can't even enjoy sex anymore, because I can't breathe.

I am led by the strongest force in the universe!!!! The power of life, every creature on earth will struggle to live right to the end, if they are capable of any degree of awareness near the end!

I believe, through self-analsys, lot of thinking in retrospect, of the things I have suffered in the past! To of had copd for at least 10yrs, hence the symptoms of the disease that I am presenting off & on.

You are the only one who knows how you feel.

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phil4u

On a infection I was admitted into hospital and they found a mass they were concerned about that was in September now I go for my 1st chemo session on Friday 3rd January

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beech
beech
in reply to phil4u

Good luck for the 3rd of January, and your ongoing treatment. Keep us updated xx

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peege
peege
in reply to phil4u

Wishing you all the very best for Friday Phil. We'll be rooting for you - please let us know how you get on if you have the energy. P

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phil4u
phil4u
in reply to peege

It has been cancelled after a meeting this morning at hospital I am going over to Norwich to have a Portacath fitted for "vein injections" next week thanks anyhow .

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Izb1

When I was first diagnosed which bronchiectasis I was the same and felt like I was left in no mans land, but not one to quit I read everything I could find and luckily I found this site which has been a godsend. The people on here with this lung disease has been fab and have taught me alot. My gp doesnt have a respiratory nurse and the hospital consultant isnt really that good so knowledge is the key. When I do get an exacerbation I know that I have to be on antibiotics and steroids quickly to nip this in the bud and for at least 14 days as the infection always ends up in my sinus's and it stays there for a very long time. I changed my diet a while ago due to having rheumatoid arthritisand and started taking supplements. I make sure I get plenty of exercise as this helps the lungs and heart. We have to help ourselves when we get these diseases and get as much knowledge as possible to be proactive on pushing for the things we need. Good luck x

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LittleJem5

Same here family still treat me like that good old donkey lol it’s a case no spots or broken bones your fine, and like you had to work it out from Drs and hospital letter plus rang hospital to enquire about a follow up appointment to be told oh I have appointment pending in March good job I’m HEALTHY XX

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flicky1

Finditmax, I was in the same position as you three or four years ago. Although referred to the resp team for pulmonary rehab, was I turned down as I was not far enough down the line and already was living a healthy lifestyle. I found the BLF leaflets pretty scary - from stage one to dying in a hospice in just a few pages. I kept trying to fine out who was responsible for my care and I came to realise that I had to take the responsibility because nobody else was going to.

Although I still get breathless, I am living a full life, and can do everything I have always be able to. I have not had a cold or an exacerbation for a couple of years now. The advice I gave myself was to put my health and fitness before everything else, to ignore the breathless and work through it. I now swim a kilometer two or three times a week, without too much breathlessness, I can walk for miles, although it's pretty uncomfortable walking up hills (but I don't stop), I cycle in the summer, I attend yoga and strength and tone classes and can do a whole hour of Zumba. I take sips of water when doing Zumba etc and it somehow seems to help my breathing.

I found this site very useful for information at first. There also people who regularly keep us informed about current studies which may help us in the future.

My motto is doing everything you can while you can, love life, stay strong and keep climbing those stairs.

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Kakariki

Hi being told to man up doesn't help anyone you say you were in the forces so being told to man up must be a little condecending . Firstly what a shock your diagnosis must have been for you I have IDL when I went for my consultation I was expecting to be told I had a slight infection ,it hit me like a brick took me weeks to come to terms with my lungs being damaged . You are feeling no different to many of us we all don't have the coping mechanism that many others do . To be told basically what you have is untreatable and as for me outcome unknown you start to feel sorry for yourself nothing wrong with self-pity it's a coping mechanism .The trouble is with some lung diseases there are no rights and wrongs the Drs at my practice have said they now very little about Intersitual lung disease as do the consultants not there fault as it's a rare disease . I have a great consultant very honest guy who says basically I have to live with what I've got the best way I can doing what's best for me .I've gone past self pity now yes my family don't understand how I'm feeling it's not there fault they can't understand why Dad can't help them with DIY in there houses or go for walks with grandkids or feel like going to the pub . I read with a chuckle a post where they mentioned telling family to breathe through a straw whilst going upstairs spot on ...What you could do with going on is a Pulmonary rehabilitation programme look it up on Google get either your GP or consultant to refer you I start mine on the 22nd of Jan thats where you will get the help and info . Feeling like giving up helps no one not you ,your family or friends. I know it's not easy and don't pretend it is but as my ex serviceman Son always tells me once a soldier always a soldier . Best of luck to you my friend keep your chin up keep on fighting...

Kakariki

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HampshireLass

Because it is an invisible illness people do not understand. I am classified as severe, but look no different! I have recently obtained a Blue Badge for parking (spurred on by my niece who wanted me to get one 9 years ago). When I told my step MIL she replied "but you don't use a stick". Sometimes I feel very depressed about it all but, I do not want people to treat me like a little old lady about to snuff it any time. I have heart probs. and osteoporosis as well but on good days I can do most things, on bad days I can't. It could be that your family are trying to keep a sense of normality for you and are not being unkind. Definitely do the Pulmonary Rehab., great help and then join the local gym. I go to gym twice a week and it most certainly helps, people get wrong impression of gyms, all levels of fitness use them, not just Mr. UK's greatest weight lifters!

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Smoggy1990Boggy

I would phone the British Lung Foundation(BLF) helpline when they are open again they have respiratory nurse specialists who are excellent and very knowledgeable. I would be also asking for a referral to pulmonary rehabilitation as it is excellent and a very supportive environment with others who understand. I would also have a look at the BLF website and their information and go from there. The NHS and all healthcare professionals are under unprecedented demand and unfortunately under the new government will only get worse. GPs usually only have ten minutes for an appointment. You don't say how old you are or whether you have a good support network. Not smoking, conserving energy, eating well and taking any prescribed medication are the best way to look after yourself. Is there a nurse at your Gp surgery with an interest in respiratory or another GP?

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Schmicter

Yep most people don't understand the illness, and us men tend to always have on the brave face anyway and often don't let others see we are struggling. My family is the same, and think there is really nothing to severe emphysema. The treatment is not real complicated either....get a inhaler, watch what you eat, don't smoke, don't drink, exercise as much as you can. pretty much the same thing everyone is told whether healthy or not. It's not magic.

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lKeith

Finditmax

You do not get over emphysema but you can take care of yourself to minimise the effects.

Exercise is recommended which can be arranged by your GP thro' the rehab programme.

Accept that you cannot do activities you used to do and try not to get too frustrated. Eat a sensible diet do not rely on ready made meals or quick food. You have to adapt to your situation, importantly do not overdo things.

You will survive but it will be a different style you live. I have it and have survived with a large number of changes to my daily activities.

IKeith

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Finditmax

Hi all thanks for the reply’s, so many, I will read them all and reply, managed to get an appointment with a doctor finally, he has given me the blue pump to start with, while I wait for the letter for my own copd nurse, then she or he can monitor me, they have also signed me up for the stop smoking meetings.. I gave up on my own but will go with it as my family say I am hard to live with since I stopped smoking..lol, I have had the flu jab. Details to follow thanks all

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Finditmax

Thank you all, I have found a place that is really helping me cope and understand, I know as guys it’s hard to put your heart out there and playing the calm dad, husband, mate that is expected of blokes, this site with all your kind words and support has helped me a hell of a lot since I joined., some of you or all I will answer as you have taken the time to explain to me and i will make the effort to do the same...many thanks for helping me move forward..

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Wildcatt_1984

I am truely sorry to hear your diagnosis. I have COPD and suffer from chest infections. I gave up smoking when I got the diagnosis and I had 10 great years chest free of problems. My situation changed when I was given the pneumonia vaccine. I had pneumonia 4 times in 2 years and I have a bad chest mnow every winter. My sister was told she had COPD she suffers with a constant cough and get quite unwell. My sister has been told that she now hasn't got COPD different doctor has diagnosed. I have another sister who has Emphysema and she said her doctor says if she cuts down smoking it will be fine. I think what I am trying to say is we should all do the best we can regardless of whether or not we need to. Lungs are a vital organ and I am now treating them with the respect they deserve, I wish I had known about these diseases when I started smoking. Everyone is told about the big C and not to smoke,but it's also all these other diseases that get you. The ones that get you anyway the ones that quietly eat away from the first day you light up.

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Finditmax

Hi all update, got an appointment with nurse as you cannot see the doctor direct they have to assess you, after what I told her about 3 weeks ago I was diagnosed with emphysema COPD and have had nothing, she booked me with appointment with doctor half hour later, they setup the stop smoking counsellor which I told him I did not need as I stopped on my own after the diagnosis, but he said we have to tick the boxes..?

I also have my own COPD nurse that will support me through what I need to do as in diet and medication, all I have is the blue pump at the moment as I had an issue and had to go and get help, I did not know what a flare up was..scary...I know now, I am only at stage two, I hope I can do my best not to move into stage 3,....silly really, I have got more information from you guys that anyone else after the specialists told me that I had a lung disease COPD..

THANKS GUYS....

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flicky1
flicky1
in reply to Finditmax

Good luck, hope you get the support and help that you need.

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peege
peege
in reply to Finditmax

Hi, so pleased you've started to get some help. It is a sad fact that here in the UK we have to be proactive in getting help, gone are the days when the gp would ring you with results and suchlike.

I just wanted to say, I joined the forum nearly 7 years ago and in that time I remember several people who've managed to turn their moderate copd in to mild copd by taking on all the suggestions the kind people here have made. In a way you're lucky that you've been diagnosed now, many get diagnosed with severe so it must be so much harder to claw back some good health.

I have other lung issues, not copd, I've learnt so much here - not from medics - to improve my lot. Good luck to you and thanks for your updates, it's so nice to hear how members are doing. 👍

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Munich

No, finditmax, but when someone finds out that I have COPD, I am asked if I smoked. When I say yes, the expressions on their faces change to indifference, because they figure I made my bed, so sleep in it! That’s why the research funds are low for this and lung cancer, but higher for other illnesses and non-lung cancer research! And there is a lot of money being allocated already for vaping alerts, laws and research because it is affecting young people! Many dollars will be spent on their ongoing illnesses, so lung diseases should benefit from the research!🤢

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mogs302

The general rule is that you die with COPD but not necessarily of COPD. If you are not on oxygen, you have a relative mild case. It will progress, but so will all your other ailments. I am 85 and have had COPD for about 20 years. I am on oxygen 24/7. I get about.

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fritz18621934

well your doctor was being supportive when he said you may well last 30 years and it is true you can lead a full and active life. well done giving up the tobacco, which is the foundation stone of everything. but you will be in a very sensitive state so soon after diagnosis and also without the crutch of nicotine. i am sorry your family are belittling what you are going through but you are clearly looking after yourself. in time you will feel a whole lot better both physically and mentally. all the best sh or a healthier life!

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Dave_H

I'm really sorry to hear that you're not getting the medical help you need. Do you have a Community Respiratory Service in your area? I can get help and advice 7 days a week where I am in Hertfordshire. I see a consultant every six months and am kept in the loop about my situation. Ask your Doctor or respiratory nurse for a referral if you can. They really are beneficial to anyone with lung problems. Good luck.

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