Just joined up !

Hi i am 42 had copd for 4 years i am very house bound due to fact i get breathless so much i get spriva ventilon and seratide but they don't have much of a effect on me,! i would love to hear from anyone who also has illness and hopefully get some insight to the condition from others like me and get some support for myself my gp is crap if blunt lol plus going to see them hard work so i gotta take some blame myself but i heard there is a pulmonary rehab i like to hear from those whom had treatment of that and how would I go about receiving this. .........so anyone willing to help me as i heard you got a brillant support network on this site so I love to get to meet you all soon ......Tahira😊

19 Replies

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  • I was diagnosed a few months ago. It's devastating isn't it! Im 48yrs young was diagnosed at 47. My heart goes out to you. T

    Struggle with the illness and on top of that we have to struggle with quitting smoking!! We, ll both put our boxing gloves on and fight this together :) WE WILL WIN!!! :) :)

  • Thank u so i cant belive all the supportive messages i am new to Internet and i do struggle with tech ,,,,,,no u no idea i am thicko trust me lol but i not going to let that deter me on this site i read loads of other people's lives and its interesting and informative linda. You just been told that is the hardest part linda acceptance of the illness it knocked me out when i got told i got deppressed over it but i learnt now only i can change my fate with this horrible illness its such a hard thing ti get us ed to learning to breathe different ect ect just take your time and together i sure we will box it in touch .Stay strong and breathe easy love

  • Hello Tahira, sorry to hear of your copd affecting your life so much. I cant offer you any useful advice about copd as I do not have it myself. I suffer with class iii pulmonary hypertension and right sided heart failure as well as a few other medical issues thrown in! But I can fully sympathise with you reguarding your being house bound due to breathlessness, I live in a first floor flat and most days stay home because if I do manage to go out the consequences of climbing up the stairs when I return home is unbearable..maybe you could join a breathe easy group as I am in may, ive been on the blf website and you can check where and when a group local to you will be. I wish you well, lynda x

  • Thank you so much i lucky i got ground floor flat my heart goes out to you with the steps !!!! I get you when you say going out such a chore its because you know that nothing is going to be easy to do once you are out .....I do go out to the local shops everyday as getting some exercise better than nothing love but the breathe easy group sounds great do i just pop postcode in and nearest places should pop up i am thick with tech i end up allover the web but place i wanted lol but i managed to get this site up n running so like everything in life learning process thanks for your reply i cant belive h op w many i got its nice to know i not alone and there a place i c a n pop my thoughts struggles on with this condition ! 1 day at a time all i can do 😆

  • Hello, I too am new to this internet stuff. I have signed mysrlf up for a computer course starting tomorrow, I wander how much patience the fella running it has lol! Yep, if you type blf.orguk/inyourarea then you see a box where you will need to put your postcode in, you cant go wrong from there. Good luck, keep well, lynda x

  • Hi Tahira, I used to teach pulmonary rehab, it does help. All the exercise and the information you are provided help build your endurance. You do it in a group setting and you are taught different ways to do breathing techniques to help you out with your SOB, and also help you rally around when you are SOB. I hopen this helps you out. Good luck, Nadine

  • I asked gp for pulmonary rehab and got told it is for late stage only, argued I need it to help me learn to exercise as heart and lung probs, so hope she puts it through. x

  • Hello Tahira. I'm 65 this year. I was diagnosed with very severe emphysema Stage 4 about 4 years ago. I could hardly walk a few steps. PR is excellent. It helps you keep fit and teaches you about the ailment.

    I still do the part time job I was doing before being diagnosed. I drive. ( Just done 200 miles to visit relatives. Got the drive back on Monday ). I'm on 1/2 ( half ) litre of oxygen which I use when I go shopping or do some arduous tasks.

    When I got this 4 years ago it took 4 or 5 stops to get to the top of my 14 steps up the stairs and I was gasping. Now I do it it one go and hardly get puffed. Keeping active is, in my view, the second best thing after giving up smoking.

  • Hi Tihira, it's nice to meet you. It's crap that you've got this so young but, having a crap doctor is not going to help. I'm not as severe as you or as experienced as many of the posters on here, but, I'd like to tell you that you will get so much help on here, as I did.

    If I were you, I would ask the doctor to change your inhalers. They have a lot of different ones now and what works well for some, doesn't help others. I've noticed that a lot on here have said Spiriva did nothing for them and on being given a different one, have instantly felt their breathing improve. If you don't ask, he'll just leave you on them. A change could get you started working towards getting more mobile.

    There are many people on here that have been in your position, Puff is one of them and they have got themselves much fitter.

    Come on here and we'll all support you, while you get yourself fit. Your still young, which is to your advantage, and if you read through some of the old posts, you'll see a lot of members have managed to peg their stage of COPD right back a level, through regular exercise and a good diet, which meant they were probably De-conditioned. I hate exercise. I've noticed that if I don't walk much for a few days, when I do, I feel much more breathless. I have to push myself.

    I'm glad you've joined, because you've obviously found some fighting spirit. So, keep coming on here and we will help you that spirit up. xx

  • Hi Tahira and welcome to the community. If you search YouTube for Breathing Exercise you can learn to exercise at home too.

    I can't even walk one step but I can do it. You don't have to stand up. I learned in one afternoon. If you still cannot understand the exercise then contact BLF. They have an exercise sheet with written instruction and diagrams.

    Try the BLF website it may even be a download. I haven't looked because I am typing via my phone.

    blf.org.uk/

    Regards Rib

  • Hi Tahira welcome, you have already had some sound advice and there will be others along with more later. You are not alone, keep your chin up. Love Sheilab Xx

  • I asked my GP directly to refer me to Pulmonary Rehab last month and I've received a letter saying I'm on the waiting list. I believe consultants and Respiratory Nurses can also refer you to PR.

  • Hello Tahira good morning and welcome to the site. I have COPD and take the drugs you mention. Some of these drugs don't suit everyone you need to work with the GP or practice nurse to get the best results for you. Pulmonary Rehab requires a referral from the doctor or consultant, it is gym based exercises to improve breathing, plus advice for your own individual health needs and you meet others with similar lung conditions. There are also on going health gyms for maintaining lung health in some areas. On line there are also details of exercises to help relief breathing difficulties at home for those less able to get out. Try the BLF main web site there is lots of info available on there too. If you have a local Breatheasy group the can be a useful source of info and support, their details again can be found on the BLF site, if you press the red balloon top of page it will take you there. Hope all the advice you get on here helps and you find time to come and chat too us all. I have been diagnosed since 2009, but have had lung problems on and off for many years.

  • You will find, through PR or some other way, our condition is very much like a sewer....you can only get out of it, what you put into it. Therefore, the more you put in, the more you will gain. PR is al about building your confidence and getting some of your stamina back...but over a very quick time. If afterwards, you persevere, you will find that being housebound is not an option...living life as full as possible is the way to go. Being breathless is crap but being to overcome it and have the means to at your disposal, without pills and inhalers, is liberating, confidence boosting and uplifting. Look in your phone book for you local Pulmanary Clinic, usually hospital based or contact you community nurse....they will help more than your GP. Don't wait for PR. Get some of BLF exercise and breathing sheets...they work. Try You Tube too. So the exercise makes you gasp for breath....watch an athletics meeting on the tv. All of those competitors have trained all year for that event and they are out of breath....but watch how they recover.

  • Hi Tahira, and welcome

    Reading the replies with interest.x

  • Hello Tahira,lovely name.I have very severe emphysema Fev1 19% and awaiting listing on the transplant list.First off get yourself a decent doctor,our health is far to important to not have a doctor you can trust and talk too.If you smoke stop,do as much excercise as you can.Being out of breath is not bad for you once you know how to control it .Breathe in through your nose and out by mouth,this gets the air deeper into the lungs and try and relax your shoulders as tension restricts breathing.Stick with us we will always help.Take care D.

  • Thanks so much for advice i been meaning to change my gp as having so little faith in them is disheartening so i will get that done and the breathe in through your nose that does make a difference i will have to practice doing that but i defo feel a difference so thanks for advice . As for the cursed smoking i tried tried tried and tried some more lol from patches to ecigs with little success but its nice to hear just keEp at it lovely to meet you

  • Welcome!

    Sounds like you have the same doctors as me. Do insist to your doctor that you are finding moving about a real chore and you have been told that PR is a great way of learning to live and breath with this condition?

    Not sure if you have given up or still having problems? If you are still smoking those evil sticks of tar and nicotine ( Ex 40 a day Smoker ;) ) Then make a real effort to give them up completely chew a liquorice stick or something to keep the hands and mouth active.

    I hope that your GP see's the light and gets you on-board!

    Be Well

  • Hi Tahira, welcome aboard, you've come to the right place for support. You will find lots of caring and helpful people here and and great jokes too. Take care xx

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