first time

[mrsfaz]

this is the first time i have been on here, i have just been told 2 months ago i have copd, i am scared to death my anxiety is through the roof and have no one to talk to..how long will i live ?

[kay1400]

Omg you sound just like me .It is very difficult to deal with mainly because in my view there is no one to really help.I think the docs do there job and assume were ok with everything,but were not were scared stiff.Ive only found this site myself a few days ago and cant believe how helpful people are.Ask anything its great

[serenityfrank]

Hi Mrsfaz

I have had a similar lack of information, and I too was pretty scared. I have not been able to get an answer (not even a hint) from my consultant or his nursing staff, the other nurse who looks after nebulisers, my own GP or the practice respiratory nurse or my pharmacist (a regular one who has looked after my medication for years).

I'm afraid that in my frustration I made a couple of intemperate statements on this forum about this lack of both information and offers of NHS monitoring and palliative treatment - e.g. community respiratory nurse involvement or pulmonary rehabilitation.

Stitch was helpful to me too in pointing out that not all health authorities have all the facilities and that probablt nobody was being obstructive on purpose.

Nevertheless, on my next visit to the consultant, I did point out my concerns and he was surprised that I should want information. He hadn't thought of even simple things like whether or not to book a holiday in the autumn (& boy does my wife need a holiday) because I didn't know if I should still be alive, let alone more important decisions and how to deal with the fear and depression I was getting on occasion.

He still didn't give me any indication of how long I might live or when & how quickly I might deteriorate, but he did at least contact the community respiratory nurse team, one of whom came to see me yesterday and who is going to arrange for me to go to respiratory rehabilitation in 13 weeks. She did give me & my wife some more leaflets and information on institutions to call for benefit advice, and encoraged us to book that holiday, but she didn't give me any real timeline.

So, I would suggest that you get all the leaflets & cd available from BLF, chase up your consultant, find out from your local hospital about any help & support departments they have available (ours has Patient Advice & Liaison Service & GUIDE which is our local health, disability and social care , information service), go to Breath Easy (details on the BLF website) for mutual support from other folks with the same problem, look on the net for the advice line for details of benefits such as carers allowance, disability living allowance etc.

All this advice is very fragmented. However, be persistent. This blog has been a huge help to me, getting tips from others who have the same problems, seeing their outlook on life and trying to emulate them in living my life as much to the full as I can One Day At A Time, and learning to accept that those days are limited and therefore precious.

I congratulate you on your courage in admitting your fear and bringing it out in the open to the people on this blog. It took me a while to do the same. Living with the uncertainty of the date of death is not easy - but really I suppose eveybody on earth does - they just don't have it thrust into their faces as we have.

[Hidden]

I very much recognise the feeling of panic. Especially as I was told one October that I was unlikely to see the new year! But that was 5 years ago now and I am still here and still breathing. I have met others with COPD and some are still going strong 20 years after diagnosis, My advice? Stop smoking. Read up on your condition and try to stay calm. COPD is horrible but rarely an instant death sentence. And ask questions. Learning to understand your condition puts you in control, improves your quality of life and will help you live longer.

[Hidden]

Talk about anxiety if you keep to yourself it is not good for you will make you feel bad about all of life it is better talking so that it helps you not make you bad about how it is.

[Hidden]

Hello, I look after my husband who has COPD and he was diagonosed about 6 years ago. I can so understand your fear - I have been so frightened too. It has taken my husband 6 years to join the local Breathe Easy group but that has really really helped him - they only meet once a month but seeing other people and discussing COPD has been a life line to him. He was asked by the docs if he wanted referring to a specialist and said NO! I think others have said - use the BLF website. Truly though there is so much you can do to stop this disease taking over your life - the first is stopping smoking (though my husband had stopped 10 years before) and excercise. SO important to keep fit. There is a pulmonary rehabilitation course available in some areas - this is a excercise and information type course which has been invaluable to my husband - using inhalers properly etc. I spoke to the practise nurse (doctors kept changing and had a good relationship with her) and asked about help and asked if she could refer us to the specalisit respiratory team which has helped. My advise - don't panic - its not the end of the world - its the beginning of a new phase but with the right help and support you should be able to continue to live a happy life .... just at a slower pace. Good luck. TAD xx PS Talk to your doc about the anxiety it is very common with COPD.

[Hidden]

I agree ... emotional outlook is crucial - remember the story of psychology students who played a trick on their healthy professor - many of them told him he didn't look well, or expressed concern in various ways about his health....he ended up at death's door until he knew it was an experiment !! the power we have in our minds is amazing, and that's why I am soooo pleased to read so much positivity here - we all have our down times, and it's important to get positive again - making life not just better, but longer too. There are so many bodily/chemical reactions to our emotions being proved now, eg immune system is harmed by negative emotions !

[Puffthemagicdragon]

It seems most of us were in the same boat. As soon as I was told I went straight on the web and read whatever I could. I was till a bit in denial though for a few weeks. It took a few more months to find this place though. The first thing, in my opinion, your GP should do is tell you about the BLF. At least it will give you a good start.

[Hidden]

Firstly, those lucky enough to be diagnosed in the mild and moderate stages should go on to lead relatively healthy lives of average normal life span, assuming they stop smoking, exercise and take their meds. That is why the BLF and NHS want to find the 'missing millions' so this thing can be stopped in it's tracks before it gets to the more severe stages. They are unlikely to die of copd. They will die of old age unless some other illness or accident comes along.

As for the more severely affected amongst us, still all is not lost. There are folks of 70 and 80 years old, on 02, with fev1's in the teens, who have been on 02 for 15 years or more, who are still around. Some even play a gentle round of golf or do a bit of putting now and then. Some may even have been 'at deaths door' a time or two, but have fought back with rehab and ongoing exercise etc.Yes, sadly, there are those who have succumbed to pneumonias and other infections and exacerbations and no one can be guaranteed a long or prosperous future - BUT - whatever stage of this illness you find yourself in you have to be positive and fight back. You have to come to terms not just with the illness , but with taking responsibility for yourself. This is not because the medics aren't 'good enough' but because there simply is no outright cure. Your level of function, your ability to ward off and fight off exacerbations, and, to a substantial degree, your longevity, will all be down to you. No one else can make you exercise consistently, year in year out. No one else can minimise your contact with germs, infections and so on. It is up to you to be scrupulous about hand washing, avoiding crowded shopping centres, cinemas etc in winter when coughs, colds and flu are doing the rounds. It is up to you to take your meds correctly and regularly. It's up to you to aim for a good sensible body weight and most importantly to exercise, exercise, exercise. Your life span and your ability to function is, mostly, in your own hands. Its as simple - and as hard - as that P.

[jojam]

Hello mrsfaz,

Yes it is really scarey to be told you have COPD without being given any further information, It should not happen but seems quite common. Please phone the BLF helpline & visit their web pages a Gordon has suggested. If you get the information leaflets & DVD from the BLF this will give you a better understanding of the condition.

You have received lots of good advice from everyone above.

Please make an appointment to see your gp to discuss your condition.

The best thing you can do to help slow the progression of the condition is to Stop smoking.....not easy I know.

Second get refered to a pulmonary Rehab course, if possible. If this is not available to you it is important to keep active by regular exercise such as walking. Eat a healthy diet, you need to take control and manage your condition. It is possible to 'Live well with COPD'

It may seem to be the end but it is not.!

Best wishes

Jo

[Hidden]

Hello,

If you would like to talk about your concerns (and some strategies to lessen the anxiety) please feel free to contact the BLF helpline on 03000 030 555 where you can access medical advice or the emotional support service, we are here 10-6 every weekday.

Take care,

Heych

[Hidden in reply to Hidden]

Love it when BLF folk drop by .

[Hidden]

Thanks .... it's not easy sometimes for us, eh, ....happily even a smile that's false apparently fools our brains to release helpful chemicals - I have practised that a lot and then find it becoming a more real smile as chemicals kick in .... a virtuous circle :))

[elian]

I can only re-enforce the statements that have already been made mrsfaz this is NOT a death sentence, unless you want it to be

Many of us here have been going strong for years with this condition and you can too, it just takes a bit of common sense and effort. I'm sure you can do it !

Chin up and keep dropping in for a top-up of good cheer