Im relatively new to being schooled in the stages of copd/emphysema so smoking cessation is my #1 priority and im just now thnx to BLF learning bout the trials n tribulations i may be in for. Someone asked me what symptoms i had ? It confused me cz i have a " i cant breathe when i exert myself or walk anywhere. Is there any other way to put it ? I feel like my life is now in danger. For the last 6 yrs i have to decline trips n vacations of activity cz i cant get around and my friends are or have not been told or quite understand what it is im going thru. To them breathing is something that isnt even discussed unless your 5,280 ft in the rocky mountains and the air is very thin. So i have to explain why i have to pass over n over these special events or fun stuff that jimmy wont be able to make again and it hurts to the core cause i am one who never sat ari
around and passed on lifes fun with loved ones and friends but they feel bad for me and im stuck ...this is killing me more than i could possibly imagine. And all i keep saying is....no cure ..no cure for this. So i am disgusted, saddened, in despair, useless, in denial about what ive dwarfed iinto.. im too weak to do anything (i do go to work at the office)...im 5'11" /136 lbs i no longer have any strength or muscle mass. My skin is stretched everywhere my ankes n feet swell, im black n blue there and my knees are a dark ugly o
Purple .. it is without a shadow of a doubt a "metamorphis" ive become Stephen King's "Thin Man" .. haha try to keep a optimistic attitude ..although reading this u would never kno it...but i have my patients at work love me and so do my daughters grankids n wife . I have alot to be living for so when i ask this question. I ask it with all seriousness...here it is ..im 54, can i live another 20 yrs ? How does one know what stage he/she is in ? Am i lookn at this wrong ? What do i need to kno other than [eat right, dont smoke, exercize, keep a good outlook, ] ? I am scared ...what use to be 1 exacerbation every 2yrs is now every 4 months.. infections and how to avoid them.. working around patients...good or bad although there only there for there eyes. See i have never had a pulmonary doc..cause my insurance has me going to limited healthcare places here in the city of brotherly love that is Philadelphia.....more unversities and doctors and medical institutes here than anywhere in the United States of America and yet i must start doing my homework cz i just left the hospital with pnuemonia and guess what...they did not give me any antibiotics ?? Huh ? How is that possible ? No prednisone ...ihad some prednisone left but thats not my point.. i was told to follow up with my doctor and its not like in uk with your gp, this is just my family doctor of general medicine. So on monday i have to beg the receptionist to plz allow me to see him and thats like not easy. This is all messed up...calling for a appt with him takes 2 wks sometimes...im not going to wait, but this is my dilema and im feeling like i wanna scream ... lord give me strength.
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jimmyr
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Make no mistake in the UK our GP doctors are just that. Family Doctors. General Practitioners. More than general family medicine needs a referral to a specialist Consultants at a hospital. It can take from 6 weeks to 18 months before they will see you. Healthcare is tightly rationed nowadays. It is always judged on a priority of clinical need. Even so when I was rushed to hospital by blues and twos with a heart attack, after I got out of hospital it took over 6 months to see a cardiac specialist.
When people talk of ringing their specialist because they are having problems with their Copd they have probably been a patient of that hospital clinic receiving ongoing care for many years. All our National Health Service has been chopped up and most has been sold to private US health companies. Even my oxygen is now provided by a French company. My physio is from a US company.
To get you appointment with your Family MD tell the clerk that you have just been discharge from hospital and that they want you to see the Doctor. That is what usually works for me. Otherwise it is the same here in UK. Two weeks plus to get an appointment.
Your Copd will not stop you living another twenty years. If you do all that the people here have advised you will probably live more. Look at the injuries and disabilities that other people on here have lived with for tens of years. It doesn't stop me going shopping for the family groceries every week even though I have to take an oxygen tank with me to take a whizz. Cheers Rib
Thnx RibvanRey, u hit the nail on the head there. Did not realize the "system" is the same and well sounds exactly like what i'm going thru. The thing bout US companies based in UK suprised me but its all a matter of need as u have mentioned. As i guess it is something that needs to be dealt with on a higher scale. Glad your able to get around a bit if there's any silver lining. Me ? Im looking into every knook n cranny from here on in. Take care of yourself. Ill chk back later. Have a nice Monday ...
I empathize with you so much, I too am 54, diagnosed 18 months ago with severe COPD and I am just unable to accept that no one can tell or is willing to tell me how long I have to suffer this damned illness. I have gotten steadily worse the last three months and I am sure this is because I just don't give a damn anymore, everyone ignores the fact that you are ill because they cannot 'see' it that includes the medical profession who secretly think you brought it on yourself. My husband, who creeps around the elephant in the room, and has recently taken to having mysterious illnesses so that I can look after him, oh and taken himself off on a holiday to have some fun! And the 'friends' who I have told, have magically disappeared? Oh well I came into this world alone and will no doubt go out the same way. Rant over, there are people on here who have lived a long time apparently, and they will be along to make you feel welcome instead of depressed like me LOL but I guess at the end of the day we are all different, and the toll will therefore be different too. You are wealthy in love from your family and friends, let that wrap itself around you and comfort you. xx
Kad u r a real trooper hun, you n i are disgusted and im not happy bout ur hubby n his antics but u have something there thats gonna get u by. I kno by listening to u that ur a survivor and dont let amyone make u their beast of burden. Keep in touch, id like that. Thnx for the family comps but i may be overestimating that..its certainly not peachy cream but i go to work nowadays bcz that makes my day . Im one day at a time as arent we all ? Tke care
Hi, I too am new to this site, I was diagnosed with a touch of emphsema in march this year. I am 60 and live in Australia. I smoked for 40 years and smoked 20 a day, I went too see my dr about putting on weight and after some tests came back with this answer I was naturally terrified, however, in 5 months I have put on 12 kilos, feel fine and still very active. I have decided that this is not a death sentence, I take better care of myself now, I still smoke 3 ciggies a day ( I am weak and I dont want the anxiety that comes with withdrawal, so I had to decide between two bad choices ).My family are very supportive and keep me feeling positive. I drink a fresh fuice every morning that I make myself, it contains fresh apple, carrot and beetroot, it is delicious and is very good for heart and lung function. You dont mention what stage your copd is at, please try amd stay positive, easier said than done I know.I have told myself that I will not die FROM this disease bit with it, and I plan on living for another 30 years, I wish to see my grand babies grow up. Good luck to you and all the others on this site, I enjoy reading your posts, say this affirmation to yourself evey morning " I am strong and you will not beat me". The power of positive thinking.!
Ditowler.hello how r things down under ? First i want to say thats what im posting about. Im in the loop as to what stage im in. The juice n the a.m. sounds delicious..send me the ingridients id love to try it. Sounds like u are getting or have a comfort level there. The healthcare in Aussie takes care of its citizens ? Hope i like u get to see my grndkids growup i would be content. Take care of yourself & enjoy your Tues since as im texting you its 9:30 pm & im 6:30am mon morn. I love that.. the diff between time zones...you are +15
Hi again jimmyr, sorry for not reading your post properly, had a seniors moment -) The juice recipe is really easy and I will send you a link so you can read up on it and the recipe is very simple. 3 ingredients only, but I add extras. Beetroot, apple and carrot, blend well and drink, I add a strawberry and extra apple juice, I feel really good and I said to my hubby that I think the dr has made a mistake in my diagnosis, heres hoping aye, hahaha. This drink is great for heart and lung function. Stay well jimmyr and stay positive. Cheers from downunder. I will send you the link after this post. :-》
Its a lot to come to terms with Jimmy - you look such a vital man in the lovely photo you posted. I was dreadfully depressed when i was first diagnosed (14 years ago age 54). Im 68 now and i was told i would probably live to 75. Hmmm, not good enough, i intend to go on longer than that. But 20 years, sure you should manage that unless a bus knocks you down first
That lack of understanding is so common, most of us have had it at one time or another. The experience of being short of breath has been likened to trying to jump up and down breathing through a straw. You could get your friends to do that and see what it is like to be you.
I know its terrible in the U.S. if you have little or no insurance. One way to get pulmonary care there is to get on a trial. There are good patient-run forums in the U.S. EFFORTS (Emphysema Foundation for our Right to Survive) is a great one. They have a huge amount of information and many members with no insurance at all.
There are support groups in the U.S. similar to our Breathe Easy network here. I think they are called Better Breathers but memory could be wrong - you could get that info from the Efforts forum. There must be so many people in Philadelphia with copd.
Exercise is crucial to build up your muscle strength. If you don't do this your muscles will deteriorate more and so will you as you need them to carry O2 round your body. Exercise for us is starting from where you are, so for you maybe just walk a small bit extra each day - it can be just a few more steps and build up from there. Do this several times a day if you can, maybe try and find a way to involve your family. One thing that stuck in my mind when i first went on the Efforts site years ago (no BLF forum then) was a man saying he caught the bus to the top of the hill so he could walk back down again. He was in late stage copd and he was adapting to make sure he could get exercise.
You also need to make infection control central to how you live: constant washing your hands after being out, opening doors with your shoulder or using a barrier between your hands and door handles etc. Educating your family about the need for this. Many of our exacerbations start with an infection - we can't avoid them all but we can do a lot to cut down the risk. When you do this, and begin to exercise a bit more (Im assuming you are fit to start this but you might need a doc to confirm, i'm obviously not a medical person) you may start to feel more in control of your life which should make you feel less depressed.
Good luck to you and of course post again with any more questions.
02trees hello hun & thnx for ur response. Yes i look like a vital man. The photo is doesnt look like i have anything whatsoever. But it is what it is a pic. Now i havent shown you the swelling n black n blue marks or the dark purple knees + broken vessels on my arms..it isnt shown...yet. but i lke the fact that u hun are a real trooper. 68 n you are in what seems to me like "eternal optimist" god bless u and i really like the advise of that door knob and u can best believe i will use it so that is very very good advise. Take care have a nice mon n ill ck back later
photo is from 2008 right before i caught this ...whatever is the name of this again ? Oh yea...ocpd ? Pcdo ? Geez alzheimers too ? Haha
Good Morning, I hope that I will be able to give you something positive! My husband is 66 now - he was diagnosed when he was 54 with severe COPD and it was all a shock. He has never been referred to a specialist because he is coping! In the last years his COPD has taken its toll and his lung function is now down to 27%. BUT he is OK - we still have a great quality of life it is just much slower than he used to be.
We like you found that we have been refusing to go out with people because we just cant it is impossible to keep up and you are right other people do not understand at all. Because there is no visible outwardly sign that you are ill! Having said that we bought a little mobility scooter two months ago and it has been fantastic - my husband can keep up now, he says he feels so much more positive because he is not holding us up, in fact I have to trot after him! We were lucky though it was second hand through a friend but that could be a way of opening up doors again!
As far as preventing exacerbations - it is such a difficult one! My husband takes vitamin C and vitamin D through winter - he also uses a lot of hand sanitising gel! He uses it all the time!!! We also have flu jabs and pneumonia jabs over here.
My mother in law lived until she was 84 and in the end it was NOT COPD that finished her off!! So actually you could have years and years in front of you. As we get older life changes anyway - its supposed to - COPD just speeds up the changes!! Sending you lots of love TAD xxx
TAD hello hun and how r u. 12 yrs now...ok awesome i love the scoote r idea and thats alot of fun or can be. Vitamins im taking 50+ at the moment let me ck into them more closely. Im glad to hear he's ok after that long a period & you have given me a lot of optimizm and i think that is what this site is all about. Take good care of him it sounds like you and hubby have had many many good years behind and will have in front of you as well. This is why i love this place its like a litle world of our own ..our lil sanctuary. ..ok ck back later enjoy your half spent monday..im going to work at 6:43am and im in good spirits unlike a wk ago in hosp ...
hi not been on for while, but had too say, I too took the plunge ,and brought a smll second hand scooter, and I love it, My hubby can now get excerise and yes e has to catch up wiith me, stubburn pride prevented me,beforehand, only issue I have had, is selecting warmer clothes when out, as can get a bit nippy whilst just sat. there is light at the end of the C.O.P.D tunnel, just ours has a dimmer switch .x
i hope you are not living over 5,000 feet altitude. If so time to move my friend to a lower altitude. I was diagnosed with copd when I was 39 years of age. A long 27 years ago now as i am now 66. As the years have progressed I have had my meds upped so much I feel like a chemical factory. Have a whole drawer full of dugs and puffers. And now also have to use oxygen for anything above sitting down watching television or sitting here typing on my computer. I have gained weight because I cannot really move that much. Oh I do move. But just not as much as I would like. I took up a hobby. Photography, even though I use a cart to get me around. (scooter in the UK where I live). i have taken so many steroids now I get bruised so easily I have to very many times use long sleeve shirts when it used to only be short sleeve. My old life is a distant memory. And to top it all sometimes I wake up feeling physically sick to the core. Life sometimes is not a bunch of fun. But - I enjoy life. I laugh a lot. Go out a lot. I am out for a meal at restaurants three times this week. And am involved in lots of activities that for me just means sitting in a boardroom or at a desk advising on copd. The way i see it the best person to advice on copd is someone that has this illness.
It really is true that keeping a positive atitude. To laugh at this wild card that has been thrown at us. To accept our life is changed and create one for the new me. It is not what you cannot do. It is what you can do that matters. my strength is reasonable. Because although I cannot walk much, I can stand and walk around a little in the house. to the car. Visit friends. Get out with my photography. It keeps me active. It gives me a reason to live. And I never not see friends. I hope my friends do not feel sorry for me. When I go out most do not seem to have even noticed my nose hose that gives me a steady stream of oxygen. Sorry this is a bit rambling. Inbox me if you want. And have a look at a blog I put together of my travels with copd, started some years ago. So you will have a bit to read at bitz-and-bobz.co.uk/copd Also might be worth a visit to bitz-and-bobz.co.uk where you will find some of my photography. All done from yards from the car. Or from my cart. All the best to you. And don't give up hope.
Hi jimmy, iam 49 and have severe empasima, last visit to specialist in hospital i was told of the mental health connection to his horrible disease, its proven that deppresion goes hand in hand, it sounds if you have this, i have been so down and frustraited that i cant manage simple tasks, you really need to speak to someone and tell them how you feel , sharing this burden makes you feel so better and this site can help there are people who feel the same with the same problems
I am a 51 year old lady with severe copd. At 5 days old I had double pneumonia and it collapsed my left lung. My parents were told to name me quick as I was going to die. I could never do gym as it was too much exertion for me as a child. At 16 I was diagnosed with bronchiectasis ( a lung disease ). Up till being 25 years old I was constantly being told I would die early. 6 years ago I was ok weighed 9 stone and fairly active. The last few years have been bad. I get constant chest infections, been on oxygen for 5 years and gone up to 13 and a half stone as I can't do much exercising. Now constantly out of breath. The least little thing makes me so breathless. Having a shower absolutely wears me out. i did get really depressed at one time.was told I need a double lung transplant otherwise I only have 2 years to live. Came home and cried and cried and cried. They told me I need to lose a stone before they will put me on the waiting list.am. Ow doing pulmonary rehab helps people who haven't exercised for a while get back into exercise. I am teaching my niece and nephews to swim and I have a little swim too. Everything is done at a slower pace now. My mom is 71 and when we go shopping I have to tell her to walk slower as I can't keep up, imagine how that feels. I'm not down anymore. My specialist is fantastl (chest wise ) I just phone his secretary and she makes me an appointment. It's a shame you have to pay for your antibiotics. Only last week my pharmacy sent me some by mistake so I took them back and she said you may as we'll keep them as we have to destroy them. So I kept them. They destroy loads it's a pity we can't send them over to people like yourselves. Please keep your chin up and try not to despair. I know it's hard. At least you have a family. My lung disease robbed me of the chance to have a family.
Hi ladyknitter, so sorry to hear your story. I too had double pneumonia as a baby, was diagnosed with collapsed lung at 3yrs old, had a lobectomy at 5. Was told the same as you I would only live until abgout 15 yrs, My mother was upset but brilliant. She gave me alsorts of stuff to keep me fit. I had a job at 16, married at 19, had three childred (not easy) and worked until 54 yrs old. I'm 68 now and still going, but a lot more breathless and slower. Have 3 grandchildren that I want to watch grow up. I try to keep positive, accept any invitation within reason to go out and do stuff.So to everyone who is depressed, please please keep going. I have been there over the years, it comes and goes.But when you see dark clouds remember there is sunshine above them waiting to shine through. xx
Your story sounds the same as mine. I had a middle right lobectomy at 35, most days now I struggle to breathe but I haven't lost the will to fight. I do get fed up and depressed at times and have a good cry. Then I shake myself off, there's always somebody worse off. I will never stop fighting this disease for as long as I can. It is nice to talk. To other people experiencing the same problems. You don't feel as alone. They say without a transplant I've only got two years left. But then again most of early life they were telling me I would die and I'm still here. Still fighting every day.
Hello Jimmy, so sorry to hear how low you are feeling. Firstly you are on the right site. Loads of friendly helpful people here. I'm afraid the U.K. situation is exactly the same as you. At my surgery you cannot make an appointment. You phone on the day at 8a.m.(which is early for people who cannot rush around first thing) tell receptionist what is wrong and you are put on a list for a call from the doctor. It is very impersonal talking your probs. on the phone, but this is the way of the future! You must keep hoping, eating well and exercising. You will feel better when you understand the disease and how you can help. Keep nagging for appointment with your doc. and in the meantime stay on this site to gain loads of info. As you learn I hope your depression will be eased. Best wishes barnowl
My thoughts are with you, this is a very good site to talk to many friends, and people who will help you. Please don't despair. We all understand on here , and it helps to talk to people who understand. I wish you all the best.
Hi Jimmy I live in NY in the mid hudson valley and the best advise i can give you is to go to a pulmonary specialist at least once a year. Your co- payment should only be a little bit more but well worth it . I have severe copd and it has slowed me down but otherwise i am healthy. 10 yrs ago i got rid of the dust collectors in my house rugs drapes, nic kacks, fake flowers books etc. switched to plants and my kindle. I eat mostly organic foods and vegtables from local farms drink plenty of waterand went green with my cleaning products. I walk every day in winter i go to the mall to walk. I read up on all the vitamins and minerals we lose naturally as we age and started taking what i need . I do my breathing exercise that i learned how to do on the web. Inflamation is the #1 problem for us with copd and keeping that at bay will go along way to keeping you out of doctors office. I have a cool mist humidifyer i have which i have on while i sleep. Symbicort medication is the only medication i take at age 65. I am 5"2 and weigh 120. By doing my homework on what is good and bad for copd i have managed to only see my doctor once a yr for a checkup . I have learned more from searching the web then any doctor. No doctor as ever discussed how to keep inflamation at bay but the internet is full with advice. My blood work and pressure comes back great every year. I able to do what i have always done just at a slower pace. By watchinmg what you put into your stomach and what you breath in yout home will go a long way to keeping you alive for a very long time . Good Luck
You need good inhalers....try to stay clear of anti bs and steroids or you will keep repeating the same ......look for meds that work they are out there!
Jimmyr, A great welcome to our forum! the Lord will give you strength. AND you have to take it when it comes.
I am 65 with severe bronchiectasis.
20 more years to live? of course! I was diagnosed in 1994. that's 20 years indeed! I have, like most of us here, gone through a traumatic time. I have declined, learned to cope with shortness of breath, got ill, not once, but several times. I was warned about antibiotics, and found that Amoxycillin doesn't work any more on me. I got pseudomonas, pneumonia and (dreadful) TB. I got over it all ... alive!
My secret of "longevity" I go to the gym 3 times a week for an hour each session. This has kept me in a decent shape. I was on oxygen, I am no more on oxygen thanks to the gym and a lot of prayers from my church friends.
I read this today: When it gets bad, I can change it. I think that's the way.
The positive with you is that you have a great family and live in a lovely town. That's a great blessing. Believe it, you are your own blessing too! You have to endorse this. Health is practice your exercises! Hard at first, but so worthwhile. it's a day to day task, well worth it! Keep your head high. As Barbra Streisand sang: never give up!
I read Your status & all I can say is, YOU EITHER NEED TO MOVE OR GET BETTER INSURANCE cause You need an oxygen generator, a portable oxygen system, steroids, inhalers as well as a nebulizer & antibiotics when needed like when You had pneumonia. OMG! What kind of hospital/medical system do You have in Philadelphia? Plus, I take Mucinex & I nebulize with albuterol sulfate solution for exacerbation.
This disease is scary to Me too so I'm living My life as best I can till the end.
Hi mad interesting comments. Does the health system across the US really vary that much? Do you get more services in Houston, Texas than in Philadelphia? Would you agree that it is important for the patient to be proactive and try out different approaches to manage/relieve the symptoms and progress of COPD?
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