Help as feeling lost

Hi. I am a 51 year old lady and have smoked about 11 cigarettes for almost 40 years. 2 years ago I become quite ill out of the blue. Every day and night since then is almost the same. Being breathless, not breathing well and coughing so much mucus up all the time with a cough that has been with me every day and night a cough that people tell me they have never heard anything like it with someone coughing all the time so bad. Doctors not been too good. Was put on a blue inhaler and serevent and clenil modulite 200. Had a chest xray last year all clear. As time has gone on I have struggled more and the last few months has been dreadful for me calling a ambulance out 3 times, twice I was put on a nebuliser and once on oxygen. The last couple of months become very breathless hardly able to get up my stairs anymore. A average day is wake about 3.30am have to cough up mucus for about a hour and struggling to breath. Oxygen levels for that hour between 90 to 92. Wake again about 6.30am with another hour coughing to get mucus up with oxygen levels again between 90 to 92. Peck flow if I can blow into it at this time of morning is usually 150. Throughout the day I am always having to cough mucus up with peck flow 300 after ventolin but after about a hour dropping down to 250 again. The last 4 months have been taking between 24 to 26 puffs of ventolin a day. A new gp has joined the surgery and he at least has took me seriously. 2 months ago went for a chest xray all clear again.

Last years spirometry June 2013 was as follows fev 1.7l-1.70 normal fvc 2.35l-2.35 normal. fev1/fvcpercent 72.3%-72.30 normal I was told by the asthma nurse that done this test there was nothing wrong with me and sent home to get on with it although I knew there was something wrong with me. 4 weeks ago had reverse spirometry and told they where very low results. Doctor then put me on symbicort 200/6 and took me off the serevent and clenil modulite. Went back last week for a spirometry and results as follows best spirometry result fev1 base 1.16 %54 min 1.49 pred 2.11 max 2.73 fvc base 1.96 % 78 min 1.78 pred 2.49 max 3.24 pef base 203 %59 min 252 pred 340 max 429 fev1/fvc base 59.2 %73 min 69.5 pred 80.2 max 90.9 Interpretations ats moderate obstruction lung age 85. I have asked is this copd been told I have a bit of asthma and a bit of copd. To me I have more then a bit of copd but I am not a doctor. The last 2 weeks doctor has given me saline 6% to use through nebuliser to help me with the none stop coughing up of mucus. It seems to me at least every 2 hours have to take a puff on a inhaler or really really struggle. I am so lost and have no idea what is happening to me but I do know my life is not the same any more. I am so tired so lost and struggle to do even simple things around the house now. Could some one please help me with what is going on with me Thank you

17 Replies

  • Hello love letter i really feel for you this is a great site ,lots of lovely people too help you .

    Please ring the help line press red button on top of the page they will help

    take care love Dorothyxx

  • Hi love letter, the helpline is open from 10am during the working week, please ring them when you can. Have you been referred to a respiratory specialist at a hospital at all? Have you been given a course of oral prednisolone? I have been in a similar situation as yourself in the past, although it is a long time since I smoked, it still gets the blame. I was given a long course of decreasing oral steroids and am now on a maintenance dose to control my breathing, with shorter courses when I have an exacerbation. Please ring the BLF helpline in the morning, or if your breathing is deteriorating badly ring 111 for advice. Thinking of you.

  • Hi Loveletter welcome to the site. I would love to write you a long reply but no time right now, But one thing stood out to me...I only recently learned about the' Active cycle of breathing', which has helped my coughing and the getting up of mucus

    There are loads of videos on youtube showing how to do this , one is called the huff/cough

    Its shows you how to deep breathe then huff to help to get the mucus up...this saves you trying to cough the stuff up , which I always struggled with for years & years before I learned this technique. I would say its the single most important thing that I have learned that helps get the mucus out of my lungs. That might help you and save you from having to cough it all up

  • You poor thing what a struggle life is for you. Firstly please ring the helpline in the morning and I am sure they will be able to help you.

    Please ring your practise and ask if there is a specialist respiratory team in your area and could you be referred - if you have such a thing he nurses are brilliant and will come out and see you at home. I found ours by googling respiratory team/services in our home town and then asked the doctor for a referral.

    Have you asked to see a consultant? That might be an option?

    My husband has been given tablets called mucodyne to help with the mucous. Please ring the helpline though I am sure they will be able to offer help, take good care TAD xxx

  • Hi Knitter.

    Not refereed to a specialist no. Doctors and asthma nurse seem hopeless to me.

    I have never been given oral prednisolone docs have said my chest sounds quite clear and as my mucus is white no sign of any infection.

    Hi Sohara I have started to do the huff cough, doctors never told me about it but learnt of it from others on here. He helps a little. Also the nebulising of saline is a bit of a help.

    I have given myself a hernia a few months back from all the coughing I have done in the last 2 years.

    What I want to know more then any thing is this copd or asthma doctors say a bit of both but asthma can be revered where copd can not and that is why I am quite desperate to know.

    Will ring the helpline tomorrow.

  • Hi Tad.

    The doctor said he rather I went on the saline through a nebuliser then be given the mucodyne

    I can not understand why doctors are not referring me on to someone else.

  • Mucodyne is very effective. I'm sure any specialist would prescribe it for you. I wonder if GPs these days are too often trying to save money. If a specialist prescribes something, then the surgery is obliged to give it to you. I also developed a hernia from coughing! Good luck - don't give up.

  • Hello loveletter ,

    In some ways your story is similar to mine.

    I had smoked about 15 cigarettes a day for 48 years . About 2 years ago I developed a nasty productive cough and frequent chest infections. I didn't seek medical advice as I didn't want the smoking lectures. (Clever I know )

    However by October last year the cough had become so bad that I was only sleeping in 1 hour bursts and then coughing up mucus for 1/2 hour . Told I was also coughing while asleep . Frequently felt like choking. Often unable to finish meals and sometimes had coughing spasms while talking.

    It was getting embarrassing to go out.

    Finally went to doctors and diagnosed copd with fev/fvc ratio of 55% . Was given spiriva (a preventer inhaler ) and brycanyl to be used as and when needed. Iwas told that the only way to halt/slow down the progression of copd is to stop smoking. I did manage to stop with the aid of champix . The big surprise was that the cough disappeared within a few days and hasn't returned !! Not everyone is so lucky I know and it can take a few weeks/months for the chest to clear. I am 63 and now feel better than I have for years . Losing the cough has for me been the biggest incentive to stay off cigarettes.

    Champix is not for everyone and there are lots of different methods. Many people are finding e cigarettes a great help and someone may be along shortly to advise.

    It is generally accepted that copd can progress quite rapidly if you continue to smoke. I'm not sure if I have read your figures correctly , but your fev/fvc ratio looks to have gone from 72% to 59 % in just less than 1 year .

    However 59.% is still moderate and with the correct medications and lifestyle ie smoking quit , healthy diet and exercise you should still be able to enjoy a good quality of life.

    Many people on here have been on a pulmonary rehabilitation course and gained great benefits They may be

    along to explain it more . It's a combination of exercises and talks you can ask your gp or asthma /copd nurse to refer you.

    I really do hope you are able to achieve some improvements in your situation . This is a great site for both information and support .Please stay in touch and let us know how you get on

    Cheers Coastal

  • Hi loveletter. I if I were you I would insist the doctor refer you to a Pulmonary Consultant and get proper tests and then they can give you the correct medicine. I had to change my doctor to another just to get things done. Thank goodness I did.

  • I get the impression it may be help to stop smoking you need more than anything,your doctor should be pro-active in this respect. It really is the first step to slow down the progression of Copd.If you have already stopped smoking I apologise

    And you need to change to a better doctor.Good luck!D.

  • Ask your doctor to prescribe you with Montelulast 10 mg. AND COMPLAIN anyone and ever one! Hope the new medication helps, it helped me but I complain about Doctors.

  • Everything is blamed on smoking, right down to ingrowing toenail - exaggeration - but in your case I really feel that getting off the fags is really imperative; it used to be nigh on impossible to do, but if you understand that every puff of smoke into your lungs is a major irritant you'll find a way. My last emergency admission was frightening and I knew I had to stop my 60 year habit or order the pine box! There are loads of "quit" methods but none worked for me, I always went back. My son found e-cigs on-line so I made the switch in one day and have not smoked in four years - and my health improved immediately. I still enjoy my "habit" but without the killer tar. Try everything but please, please give up the ciggies - you know it makes sense.

  • Was on 11 cigarettes a day until I brought this it has really worked for me and now from yesterday am down to 2.4 cigarettes a day.

  • I live in the US....some medications have side effects that cause more coughing especially blood pressure medications. Look for things that trigger the cough. You are the best judge of your health condition....keep fighting to find answers . Best of luck...I will keep you in my prayers.

  • High Loveletter,have you not had a chest scan, this can reveal many hidden things that are not on an ordinary e-ray, as i found out to my cost, two years ago like you i was bringing up lot of muscus i was told i had bronchitis, but it turned out to be C.O.P.D., being Diabetic i cannot have steriod tablets, instead i have steriod puffer two puffs twice daily, and ventolin inhaler, which i can use anytime, but i do have freqent chest infections but i have ready antibiotics on hand.

    i do hope you feel better soon and get the help you need.

  • Simple quit smoking cuz it will kill you slow maybe but it will

  • Hi, Your first act should be to give up the weed.

    Next move to another surgery. When you then see the doctor ask him for a referral to see a Pulmonary Consultant.

    If possible, get on a Pulmonary Rehab course. It will get your body working properly again.

    Best of Luck.

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