New to site COPD not long to go feeling lost

[smiler0ne]

Evening to you all , I'm new to the site but have been reading various posts and I have come to realise there are so many people in similar situations to myself. I was diagnosed with COPD over 7 years back but just been informed I'll be lucky if I'm still here in next 12 months I have several medical problems to accompany my COPD they are 2 long to list. Would appreciate any help / advise for any constructive advise as to where or how to deal with all theses emotions . Tia smiler

[Helen6]

Hi Tia, welcome. You must be feeling confused and down at the moment. I hope it will help to know that there are many people on this site with COPD who have been given a similar prognosis to yourself but proved the doctors wrong!!!! With lung conditions, it's almost impossible to predict the progress of the disease. I don't know what other conditions you have but the main thing is to stay positive. Check if there is anyone you can discuss your feelings with. It seems to vary across the country as to what is available but do ask your doctor/ consultant / respiratory nurse (whoever you can see easily). If you haven't accessed a pulmonary rehab course, then request that your doctor refers you. I'm sure you will get lots of replies from people with COPD. If I believed the life expectancy info for IPF, which I have, then this could be my last year as well, but I assure you it's not!! I don't use oxygen and am still able to walk for a few hours on a good day. Please don't let what your doctor said get you down - he really doesn't know.

Best Wishes,

Helen

[smiler0ne in reply to Helen6]

Hi Helen 6 thanks for your reply and trying to keep me on the positive track, I very much appreciate your advice and how quickly I had a reply thank you so much . I'm sorry to hear you sound in the same boat as I'm sure there many more. I think it's good to chat with people that are in similar situations. My other health problems are angina, rheumatoid arthritis, vascular disease and recently diagnosed diabetic. That's the more serious conditions as there are more however. I think my main worries and anxiety is that I'm the main carer as my partner has mental health problems, and I have a daughter with severe learning difficulties. She has always lived with me and she has sensed there something wrong she knows how ill I am and is constantly getting upset and saying she doesn't want anything to happen to me. No amount of trying to reassure her just doesn't stop her getting upset. As for my partner she is trying to stay strong but it is begging to take its toll on her aswell. I think I've got to say I'm more worried for there future than my own. I'm 53 I can not walk very far without getting breathless , my doctor is useless however my nurse is great.

Anyway I'm sure I will find friends and comfort on here as there seems to be a lot of support and understanding on this site .Again thank you for your input Helen xx ps (tia is short for thanks in advance ) that in itself made me smile Hun xx

[Hidden]

Hi & Welcome ... Defo agree this lot in same boat as yourself.

Luckily i forget about horrible stuf and try to carry on.

Is all any of us can do really

[smiler0ne in reply to Hidden]

Thank you Jeff for the warm welcome, as you probably can see I have answered Helen and give a little more info about myself and situation I'm in.

Thanks smiler xx

[Jessy11]

A very warm welcome Tia. There's many members here who have had Copd for many, many years & are all still living a full life at their own pace.

Helen has written an excellent reply & I can't really add much more.

The main thing is to not feel down & if you do just chat to us. We're very friendly & willing to listen, give advice or just chat generally.

Take care & keep in touch with us 🌺

[smiler0ne in reply to Jessy11]

Hi there Jesse thanks for the warm welcome and your kind words of encouragement. Again I have answered Helen letting people know a little more about me and my situation. Thanks xx

[Caspiana]

Hello Tia. There are really good replies here already. I don't have too much to add except that my grandad was diagnosed with throat cancer. It was quite advanced and the doctors made all sorts of grim predictions. They gave him months. He lived another 15 years and ultimately died aged 90 of old age.

Doctors make predictions but in the end they arent God.

Much love to you.

Cas xx❤

[smiler0ne in reply to Caspiana]

Thanks cas for your warm welcome and your kind words as you can see I have replied to Helen saying a bit more about my situation and my history. So not wanting to bore people and repeating several times. There's more info above . Thank you will keep in touch think the group is a great place to talk with people that are understanding of all the issues that come along with people's diagnosis. Thanks you xx smiler

[y_not]

Hi Smiler,

I look at my wife/carer and get what your concerns are. Have you thought about a local Breatheasy Club, maybe CAB or other carer support network (possibly via the GP surgery?).

Carers need caring for just like the people they care for, your health issues just compound the problem. If you can widen your network of support then maybe they will be able to help with the pressure you are under?

As regards life expectancy, who the hell has any idea when a lung condition will cause "end of life"? Sure, I have COPD, arthritis and sleep apnoea but the scariest thing is still the number 19 bus whenever I cross the road! Who says that that might not be, for me, the "end of life"?

I'll live for today, enjoy every moment and try to be as nice as I can ... people are less reliant on me than you in your situation but sometimes there is no option but to grasp the moment rather than worry about a future which we know nothing about.

Best wishes - hope you find local support

Tony ... not an acronym ;0)

[Hidden]

Hello Tia smiler,

A warm welcome to you. After reading Helen's wonderful response, I feel there is just nothing else to add. Those of us ex smokers with copd, unsurprisingly, have no faith in our doctors for obvious reasons. This is the perfect place for sound advice and support, and there is usually someone on here day or night. Don't feel alone.

Good wishes from me. xx

[Hidden]

There are lords of people on this site with copd and a lot off othere illness all i can say is do as much execies as you can upper more in porten as to get the lungs moving and only do as much and thing you can do that little bit more because if you over do it you can do more harm than good eat healthy but do not stop living and do not say to your self i can not go on like this as in the end you wi just stop and sit in a chair and land up doing nothing just waiting for things to come to you so KEEP FIGHTING AND YOU CAN LIVE A LONG LIFE

[katieoxo60]

Hi SmilerOne, Welcome to the site sorry to hear your prognosis sounds poor, what can I say , sometimes proignosis can be incorrect. It must be difficult for your family too. There are others on site with more advanced COPD . Your emotions could be addressed by a short course of counselling via GP referal, or BLFs helpline nurses or even Macmillen Nurses , who help people with life shortening illness.I think some rehabilitation units in some cities have such a service too ( but don't take my word as gospel )

[Scud]

Hi smiler one, welcome as previous Helen has written a great reply, I think you have made the first step by joining the this site there are some great people on here to support you as I have found out, I my self have COPD and was diagnosed over 20 yrs ago more recently have gone through radium treatment for lung cancer and I am on oxygen 24/7 but I still enjoy life staying positive is a must, I am going out shopping today with friends and looking forward to it. I wish you all the luck in the world and if it was your Dr who said you won't be here in 12 months get rid of him you can do without such negativity in your life stay strong we are here for you.

Love Sue x

[sassy59]

Just want to say welcome Tia. You have had some wonderful replies and hope they.have.helped a little.

Thinking of you. Xxx

[piping]

Hello Tia....welcome to our site from Australia .Thinkl everyone said everything that I would...most important to stay positive and you will get bucket loads of support from this site.

[Hidden]

Hi smiler nice to meet you. I can't add much really as the others have said it all except to reiterate that there are those on here who have greatly exceeded doctors predictions and aren't going anywhere just yet.

I love your alias so remember to keep on smiling, x

[Watfordgirl]

Hello smiler, I hope you've find some help and support in the great answers you've had.

Thinking of you and your family and looking forward to hearing how you get on. Sue x

[Dedalus]

Welcome Tia - you really have more challenges than most - hope the great info above helps. Hugs and all best wishes x

[2malinka]

Hi Tia,

Welcome to the site. I have severe COPD with a FEV 1 of just 15%. I am on oxygen 1-1.5 litres 24/7 but still manage to do stuff, even drive. I have had COPD for about 20 years. I don't believe that medics should be telling people how long they will live. They are not physics or God. I don't know what your other health problems are but you will find a wealth of information on this site.

Please look after yourself.

Malinka

[Titchy52]

Hi a big belated welcome to the site x

[Billiejean_2]

Hi Tia, welcome to HU ! I hope you've had some reassurance from the answers you've got here.

[Hidden]

HI Smiler, you know ive been thinking that you posted on a bad day and what you have been told by well by who eh,, the thought of your child and your hubby I think is bearing bit heavy on your mind eh,, listen no one knows how long we have ok , who it was told you that take it with a pinch of salt eh, they don't no who told you how long anyone as really , the 1st day were born well that's one day less , the rest is up to you or any of us how we live it , so what are you going to do eh, listen to them scaremongering you or move yourselve eh and prove em wrong , live for the now Smiler let the rest come well when it does which wont be for a long time yet though.keep busy eh as best as , and don't let the mind control you ok you take control now eh .

[diesel12 in reply to Hidden]

brilliant answer

[Catnip]

Hello there. I got my emphysema diagnosis in 1988. Don't consult Dr Google, keep walking and stay positive!

[Pannazaman in reply to Catnip]

Hello Catnip , WOW . You got emphysema from 1988. But why my dr says ,patients of emphysema can not live longer . Can you tell me what meds and lifestyle changes you are following. Many thanks. Panna

[Tee1008]

Hello smilerOne

Welcome to the forum and nice to meet you. It must be difficult not to be able to discuss your feelings with your partner and the problems she has as well as trying not to upset your daughter further. I hope we can be a safe place for advice and comfort.

Tee x

[Bwebb]

Hi smiler. Your icon and title says a lot. I have had too many setbacks in life, 22 surgeries and 2 cancers, and the way I found peace was to accept that there is not much one can about it but to take care of yourself and try to be at peace with whatever your Lord gives you. I have a very supportive wife and have had a pretty good life all said and done. I'm trying to enjoy whatever time I have left and maybe even doing things I would have waited for had I not been so sick. I'm pretty well now, having beat the cancers but suffering with COPD. Keep smiling, keep faith and live your life as well as you can. May your god bless you.

[deenyweeny]

You seem like a very courageous, kind, and loveable person. Stay positive and believe that you can get well and that will go a long way.

[falconcottage1]

Research cannabis oil for copd on facebook

[Eve3066]

The trouble is that if you are given this sort of prognosis it is very easy to more or less give up. I know when I was first diagnosed 10 years ago I felt that I was waiting to die. For some reason I could not get on top of this disease and had three very quick hospital admissions with stage 4 respiratory failure.

Now I appear to manage this COPD much better and virtually never give up although I have had some scary times. I have never again been hospitalised with that diagnosis and keep on top of medications, often trying out things suggested on this site.

Don't despair and get up and get going, I also have diabetes and thought that was the end of the world but I now manage that fine.

If you have family to look after you need to carry on regardless, you can do it....

[diesel12]

Hi Smiler, I think we all get bad days and I'm sure your feelings of responsibilities lie heavily on your shoulders. Doctor's aren't always right, and I'm surprised that a timescale was given to you.

My mum has stage 5 kidney failure and was told she has 1-2 years but that was 4 years ago so I tend to take this stuff with a pinch of salt.

Keep walking, set your self little targets like I'll walk 50 steps today and then the next day 52 don't set yourself up to fail but don't make it too easy (that's me) You could get your daughter to "help" you.

Welcome to the site, make yourself at home

[O2Trees]

Hi Tia - welcome I have severe copd diagnosed 16 years ago and yes, Im doing fine. Im writing with some of the things which have made a big difference to me in feeling ok about my condition. If you know this stuff, then ignore it.

You dont say who told you you mightnt be alive in 12 months but as many above have said, this is impossible to know. Would it be possible to change GP? What is most important when we have a long term condition is to be able to work in partnership with our healthcare practitioners. You need a doctor you can talk to and it's important not to be intimidated by them, remember you are the expert in how your condition(s) affects you.

When I was diagnosed I desperately need to feel more in control. You dont say whether you are on oxygen but what I'd suggest if you dont have one is to buy a pulse oximeter to measure the oxygen in your blood. You put it on your finger as Im sure you've had done at the GP's. This is one way to know what your usual resting and exertion saturations are, and then you can see if they are below usual, which might indicate an exacerbation. And if you are regularly below 88% sat, then you need oxygen as the organs can be damaged. Do you have an emergency pack to keep at home (antibiotics and steroids)? Most of us have these and they are a god-send when we are going down with something (exacerbation).

You dont say what medications you are taking but if you are so breathless, it might be useful to have a medication review.

A PR referral is a great idea - not only do you get appropriate exercise but also education. Another place to meet people with the same condition as you is at a Breathe Easy group though Im wondering if you would be concerned about leaving your partner and daughter.

Not sure if anyone above has said but you can call the BLF helpline 03000 030 555 and talk through your concerns and what questions or issues you wish to raise with your GP or nurse, their nurses are very friendly and knowledgeable.

I hope everyone's great posts have been a comfort. I do hope you will feel better asap. I noticed that someone suggested getting some counselling - we have counsellors attached to our community respiratory team but I know everyone isnt so lucky - the one I saw was very helpful.

Stay strong and very best to you, jean

[24811]

Welcome Smiler the People here are very kind and willing to discuss anything with you so please keep in touch and God bless your whole family 💐 🌷

[Joward]

Hi smiler hope your o.k. people on here are very nice if they can help or advice you they will I'm don't as bad as you but I'm the same age look and look at surgery and all the medication that can help love from jo

[JP1954]

Hi Smiler, this group of people are wonderful. My husband was diagnosed in October and I thought it was a death sentence. NOT SO. Keep well, stop smoking, take exercise and best of all laugh. Your really half way there with a name like yours.

All the very best

Jp

[O2Trees]

I also carry my cylinder on my back Belinda. Do you have paediatric cylinders? They aren't meant to give them to adults, not sure why, cost maybe. But I made a case for having them as Im quite active - ride bike, play table tennis etc - and being active boosts your immune system. And if you get ill less often, and/or less badly, it saves the NHS money. I cant imagine carrying a standard adult sized cylinder.

Take care

[Azure_Sky]

Welcome to the forum, Smiler. You certainly have a lot to deal with. 26 years ago a doctor told me I could drop down dead at any time. Well I am still here. The diabetes isn't too bad so long as you are careful with your diet. I have had it nearly 7 years now,

I only went on medication last summer. I hope it will be a long while before insulin is needed. With regard to your vascular problems, all you can do is watch your diet, take your medication and carry on.

Doctors are very fond of pretending to be psychic. In most cases, they haven't got a clue. My husband has terminal cancer, even so nobody will predict how much time except to say a few months. They admit they don't know.

[smiler0ne]

Thank you all for youth very warm welcome. I really appreciate all of your advice and can't thank you all enough . I will be taking on board all your kind words and support and especially will be trying to stay positive. Love to you all thanks smiler xxx