copd

Chest and lungs
1

I was diagnosed in March 2009 with COPD, My Fev1 is 52% and 62% after ventolin. My Dr told me that its really mild and that by stopping smoking it should not get any worse. This goes against everything I have read online since being diagnosed. I am obsesed with copd at the moment, and have been put on \"happy pills\" every moment of being awake I think copd, I am so scared. I'm only 42 years old. I dont want to die young. I so want to get into my 70s if possible. My Dr tells me that I will providing I never touch another cig again and look after myself. Everything I have read online gives me only 10 - 12years at the most. I dont want to leave this world so soon.

I read that we all lose about 30 ml of lung function each year if we do not smoke, so 52/3 = means I will have a lung function of 22% when I reach 52 years of age. Does anyone know if we do all lose lung function every year, can someone please tell me, if my Dr is right and that there is nothing stopping me reaching 60s or 70s providing I never ever smoke again. Please help me, this is driving me crazy the thought of ending up fighting for breath and dying so young.

Thankyou....[/b]

2

Hi Paulexsmoker,

First thing is that now you have stopped smoking, which is the most important thing you could do for yourself and this condition you should feel a bit better. But your doctor is right, you must not have another one.

Next take any inhalers or medications regularly and at the right times.

Also exercise as much as you comfortably can. That is an important one.

Eat healthy food.

As soon as you think you may have a chest infection brewing get to your GP for any antibiotics you may need.

I had TB 14 years ago, it was very far gone when it was diagnosed. It left me with badly scarred and damaged lungs and COPD. I have done 14 years and know of a lot of people who have had COPD from teenagers and are now in their 60s.

Lastly, which is hard for you at the moment, is to keep a positive attitude.

Let me know how you are getting on.

Warmest regards

Tessa

3

Thanks for your reply Tessa.

What I do not understand is everything on the net, gives me 10 years max. I so want to believe my Dr.

What also scares me, is I have not been refered to a chest specialist. I feel like I have been sent home to slowly die with inhalers to help ease my breathing.

I don't really get out of breath, when I was smoking I was using a inhaler a week, (ventolin) now they last a month. I also use symbicort 200-6

just a puff in a morning and one at night.

You mention people who have had copd for years. Do you realy believe that I could at least get into my 60s without being to badly disabled by copd. Considering that half my lungs are wrecked, fev1 52%

4

Morning Paul,

I know it is quite scary being diagnosed with COPD.

I was 49 when I got severe COPD and will be 64 this year. Life has ticked on pretty much the same except I cannot do things as fast as I used to and have had to accept that I have to move and do things more slowly and rest when I need to.

I know people who have had COPD for many years and have worked all the time.

I would suggest that you ask your GP to refer you to a chest specialist. You can then ask questions about the things that are worrying you and will not feel that you have been sent home to die but have a life to live.

If you register I can send you a personal message with the link to the COPD discussion group. You may find it helpful to hear how others cope with this condition.

Tessa

5

You are right when you say that you think normal lungs lose around 30ml of lung function per year. If you are 52% now and you dont lose anymore than the normal age related rate of 30mls per year from now you will still have 52% in ten years or in 20 years etc. If you dont smoke again and exercise there is a good chance you will live a long and active life into your 70s and maybe beyond.

6

Hi Paul, Tessa asked me to have a quick word with you and maybe put your mind at rest. I have had copd for nearly 14 years and still continue to smoke (fool that I am). I must admit life isn't easy now but thats because its caught up with me . I struggle for breath and have to take life in the very slow lane. It sounds to me as if you have a very long way to go yet- years in fact. So please try not to worry too much you won't help yourself and you will learn to cope with it. Pace yourself it does'nt matter if you get breathless you will know when to stop. Are you on steroids and what other medication. Be positive you will find there are good days and bad days and if I can help in way ( I have years of experience) pl.let me know. Caz.

7

Thanks for the reply Caz,

I'm terrified.

for three months nearly I spend every moment awake trying to find hope. Googleing thousands of websites.

I'm crying almost daily. I have lost interest in everything that I used to do.

My life now is copd 24/7 I even have nightmares about it and wake up in terror.

The first thing that comes to mind when I wake up is copd.

Everything on the net only gives me about 10 years.

I've looked that the fletcher ? copd smoking graph and dragged the graph slope to my age (42) fev1 52%) that gives me 10 years at the most, 100s of articles which all say about 10 years. My Dr says I can reach my 70s, he said carry on smoking and you'l be on oxygen at 60. It's not that I don't believe him, but everything I read says that he's wrong.

Medications I use a blue inhaler (ventolin) as required. And Symbicort 200-6 once in a morning and once at night.

My xray looked like a sea mist or fog had covered it. With lots of white stuff . I have had no referal to the hospital to see a consultant.

I am so scared...... I spend hours trying to work out how to stop my lungs declining,

I read on a site about a guy called John who ran a breatheasy site ?

that normal decline is 0.03 a year, that means if mine decline as normal, they will be on 22% in 10 years.

I'l only be 52 in 10 years. I want to live to be into my 70s I don't have enough lung function left.

my actual spirometry test readings are

FVC 3.92 LITRES 81%

FEV1 2.07 LITRES 52%

AFTER VENTOLIN 2.47 LITRES (62%)

Please please help me

8

If you lose at normal rate of 30ml per year now that you have stopped smoking, it will take 20 years to lose 600mls which leaves you around 1.8L at age 62 ... or 1.5L age 72 etc .... you will probably lose a little bit more than 30mls per year on average, so if its say 40mls per year then in twenty years at age 62 you will have 1.6L left and so on ...... so its really not too bad. Its very important to get diagnosed and stop smoking early and you have done that. Your situation could be much worse.

9

HI, I have just read your experience and although this is a long time after your post want to give you some positive hope. My husband was diagnosed about 4 years ago with mild/moderate COPD and was also told that this should not worsen. I did think OMG and felt as if we had been left to watch him die. BUT not so. Firstly regardless of what you have read - I have heard from one of the best chest specialists, our own GP and our family friend who is a GP that the symptoms should not worsen if you have given up smoking! So that done onto the next - firstly (my husband is rubbish) - exercise, take it slowly but try to get yourself fitter. You may get out of breath but try walking and then slowly increase the distance. Don't worry if you get out of breath, take an inhaler with you. My husband also started to use the POWERBREATH (on the net!) and this definitely helped him and his peak flow has dramatically increased. There is also a SALTPIPE that seems to help (though apparently it horrid!) you inhale salt and keeps the lungs free from infection. There is also a little device called a FLUTTER PIPE which is supposed to loosen any mucous on the lungs so you can cough it up. There is also a supplement NAC which is given to patients with chronic bronchitis - this can help but my husband reacted to it - his ulcers played up! Also there is a supplement called SERRAPEPTASE used in germany regularly as an anti-inflammatory which my husband finds has reduced the coughing. (CHECK WITH YOUR DOC before taking and read up on the internet!) OMEGA 3,6,9 - really good supplements and a high dose of vitamin C. AND if you think you are getting a chest infection get to the DOC and get some anti-biotics and steroids - deal with it quickly. Our Doctors actually let us have them in the cupboard just in case so that we don't have to deal with locoms at the weekend. AND if you can afford it get a back massage - just a regular swedish back massage once a week or fortnight, it will help massively to keep mucous off your lungs AND will help your stress. WINTER is a bad time and you may find it more difficult in the cold, there has also been research done that suggests mornings are worse. AND COPD does without a doubt increase stress levels. YOU can live with this, and you live positively and have a great life. GET LIVING and GOOD LUCK

10

Hi tadaw,

That was a excellent, positive posting and very true.

If Paul was to do all that you recommend he would indeed improve his quality of life.

11

I was diagnosed with COPD in January and was terrified it was a death sentence but after reading this I now have hope thanks to you all This saltpipe does it really do any good someone told me about it but don't know of anyone who's used it.

12

hi Cath49,

I have used a salt pipe but never noticed any improvement in my breathing over the period of weeks that I used it. However one of the men who attends the pulmonary maintenance class that I go to has said that he has benefited greatly from Salt Therapy. He has paid £100 for 16 X 1 hour sessions and states that after his sixth treatment he has felt a good improvement in his severe copd condition. He sits in a room/chamber with 3 to 4 others and fine salt particles are circulated in the air for the hour. Other people may have different opinions re salt pipe and salt therapy, as for me I still take my Symbicort, Spiriva, and reliever inhalers plus Mucodyne capsules as well as attend pulmonary maintenance class.

Regards,

Robert

13

Thanks Robert I have the same inhalers as you and also some Mucodyne I have just been diagnosed so will give it a couple of weeks before trying anything else This is all new to me and a bit frightening

Thanks

Cath

14

My husband is 61 and was diagnosed in 2002. He uses Salbutamol, Cetirizine, Fluticasone Furoate and Seretide. His FEV is 1.20 = 35% and his FUC is 3:16 = 72%. This gives him a FEV/FUC ratio of 38%. In June he had a heart attack so has added medication to deal with.

He is full of life most of the time and can do most everything that I can do. He is on a cardiac rehab programme at the moment and is doing all the exercise as prescribed there.

He will not give in to COPD and is determined to keep active and positive.

I might add that we are practising Christians and firmly believe that God wants him to survive this and live a good life.

What more can I say?

15

Very encouraging advice for all to read.  I have suspected COPD and am starting tests tomorrow.  I have been taking Serrapeptase for a couple of years and will restart usung the salt inhaler...you have to get the correct salt...not table salt.  When I used it, it worked a treat. Thanks for being so positive.

16

yes it does work well....I did not want to spend umteen dollars or £ on buying one...go onto YouTube and see how to make your own for practically nothing.  You must get the recommended salt though..it cannot be ordinary table salt.  Good luck.  Oh yes, when you make your own salt Inhaler....don't fill it up more than half way otherwise you will inhale a mouthful of salt!  Quite funny the first time I inhaled as I filled the bottle right to the top!  I take my little bottle everywhere and breath in the salt dust several times a day for about 20 deep inhales.

17

I do sympathise with you.  I am now 64 and was diagnosed with restrictive airways disease about 12 years ago.  I have an annual spirometry test and the nurse told me this last time that I have the equivalent lung capacity as a 90 year old female!!  Not a cheerful thing to hear.  However, the deterioration seems to be quite gradual.  It is very frustrating not to be able to walk up hillls or dance anymore though.

18

Hi Tessa and friends

Hope you are well. The doc informed me that my FEV1 is 66%. The only symptom I have is breathlessness nothing and it lasted for two days. The doc prescribed inhaler for one week and check up.

Can you tell if I am misdiagnosed?

Can the symptom go away?

Thanks for the help

19

Wanted to let you know that my dad was diagnosed in his mid 40's.  Of course he stopped smoking and he is now 78.  Just this year he had to start taking his oxygen all the time.  But he lives by himself and gets along and still drives.  Keep your spirits up and eat healthy, stop smoking and exercise all you can!!