Hi new on here...my names jodi I’m 44 and have stage 4 copd....I’m currently on relvar incruse and subutamol. Today my copd nurse wants to put me on azithromycin as I am constantly getting infections 7 last year. I feel I’m at my wits end....I’ve gave up smoking however suffer bad anxiety due to copd n struggling to breath....I’m constantly on antibiotics and steroids and have gained ove two stone....I’m feel like giving up at times as this condition is so debilitating....what would yousnrecommened tomhelp me I’m sick of being sick....is there light at the end of the tunnel and can thisncondition actually become manageable that I can maintain a relatively healthy life again...sorry long winded but it’s the first time I’ve ooened up to talk about it
Struggling with copd : Hi new on here... - British Lung Foun...
Thank you....I’m going to try the new meds as I’ve done everything else that I can. I have been signed up for psychotherapy, pulmonary classes and physio also. I’m trying to be hopeful that it will become managed. Would love to hear if anyone has been threw the same and is well....really hope u can manage your copd lemon7 thanks for reply x
Hi , I am stage 4 too and have had lvr surgery due to have other lung done . Pulmonary rehab was very helpful and informative . I have been on 2 courses and have for 5 years kept up the cardio vascular exercise routine they set me I think excersise and forcing your lungs to work is the key to longevity . Good luck and keep positive
This is the thing where I’m constantly unwell I don’t feel well enough to excersise and thebsteroids have made me over weight I have lots offered to me now classes and new meds I am trying to be positive and see hope for the future I’m happy to be here and hear others who are in the same situation and cope as I believe this will
Inspire me to be positive
I have genetic alpha one antitrypsin deficiency and my dr. Put me on a 3x a week azithromycin regimen. It has helped a lot. You are young to be stage 4. Do you have alpha one?
Alpha one antitrypsin deficiency is a genetically inherited disease that causes copd.
Hi I am a bit puzzled by your statement you are stage 4. As I understand it there are 4 stages - mild, moderate, severe, and very severe, yet you say you are moderately severe? Do you know your lung function ie your FEV1.
As you are young to be severe (regardless of whether you smoked or not) it would be worth asking your doctor to test you for the genetic link as the disease can progress faster in those with it. It is only a simple blood test.
Another determining factor is if you have or had close relatives with lung disease, do you? x
Yes I do my aunty has also copd my fev1 in December was 1.54 (66%) not actually sure what it means finding it hard to understand and fully realise what’s going on hence why I am going to attend pulmonary rehab physio and physiotherapist...,my notes say stage 4 however my consultant said it was moderately severe
Your not young to have COPD as I was first diagnosed at the age of 40 but its taken me until where I am now at age 69 to get to stage 4 so I find it hard to think you are that far advanced. Only real advice is to suggest you eat sensibly cut out anything that you know is not good for you, exercise as much as you can if only a good walk every day and ask your GP to refer you to Pulmonary Rehabilitation course which are well worth doing and you will see an improvement afterwards.
Thanks U you are actually the first person to have said I’m not young to have copd, my team has said I’m stage 4 and I have been referred to pulmonary rehab physiotherapists and psychologist as I have high anxiety also. I am trying to accept and u derstand this is my life and greatfull for any advice to help me manage and cope....feel alone as no one in my house understands as neither do I si this forum I believed would help me however I feel judged n questioned
I was diagnosed at 29 .I don't have alpha 1 but they say I am stage 4 and I am 49 now.My mother has it,my father and grandfather also had it ,even though my dr told me it could have been caused by woodsmoke,my parents smoking and I also smoked but not that heavy.My lasy fv was 20%.It is very frustrating but it can be managed.
hi Jodi-im so sorry you have so much to deal with -I wish I could help you but in going through the same stuff and I have to tell you I am a mess,but there are wonderful people here that will help you ,so hang tight and they will see your post and when they get done with you ,you will feel so much better!
Les no they haven’t given me oxygen I’m still under reviews of managing these constant chest infections however have not been offered oxygen and I do struggle to breath so bad...I’ve have Been taught to breath from not diaphragm rather than chest. This helps me to gain a breath...when I manage a deep breath it’s like luxury....makes me realise what we take for granted in life and breathing is defiantly one
Not everybody who has COPD needs oxygen. I was originally given it for 16 hours a day but that was a long time ago but only because my body needed it and as things have progressed I am now on it 24/7 which I have now got use to. Be careful and do not necessarily believe everything on the internet, as we all need different things, and take different medications so far better to make a list of what you need to know and talk it through with your GP or a specialist. We are all here to chat to whenever you need to if that helps you.
I agree I’m hoping to find help amongst others x why are u scared for oxygen if your stats have dropped then it will help u to have it . However your stats could raise by Tuesday fingers crossed u will get positive results and won’t have to have oxygen. My levels go up and down yet I’ve not been put on it. I think if it stays low then there’s a possibility yet that’s just an assumption as I’m new to knowledge of This condition. I’ve been diagnosed for 4 years however haven’t had time to properly research or learn the condition as I lost both parents shortly there after so have been grief stricken however I am now in a much more stable place n need to learn and cope hence why I have now finally joined this group
so sorry for your loss,my you are going through a lot! I really don't know why im scared of oxygen its just that in Dec. my doctor had me have a ct-scan and told me there was a trace of emphysema and that is all I have been told so I have really been scared I don't know what stage im in or nothing so its been a long wait from December to March 5th! and please call me Marjorie
Marjorie you don’t have much longer to wait darling....you have waited for a long time so far so u are prob feeling a little anxious as the time in nearer to finding out but I assure you if it was really bad they would have called you and had u be seen sooner rather that’s later anyhow I’m here if u ever want to talk xx
Hi Jodi I have bronchiectasis /Copd and am not on oxygen. My O2 level is still high 90s and was told I dont need it. I am on long term antibiotics and steroids as I catch every thing going, last October my copd went Stable but still get the dam infections. It's the coughing I wish would stop. Last Sept I started taking Vitamins A And B12, B6 and in October my copd went stable so yes I'd say there is light there .I am on a nebuliser but am getting there. So Chin up and be safe..Hugs
I’m currently on incruse relvar salamol also constantly on doxycyclin or amoxacillian and steroids they have given me carbocisteine to break down my phlem and are going to try me on azithromycin tonorevent I’ve also been referred to lots of different classes pulmonary rehab physio and psychotherapy so on the right track just need to be positive
Im Jan. Welcome to our group. 🤗
Sounds like in spite of having a horrible time you are being supported in your COPD.
The pulmonary rehab groups are very good and its also a way of connecting with others.
The things to try which help most people are:
simple exercise like walking-try to walk a little every day and build up distance-it really helps lift mood and stabilises weight.
Singing-like a Rock choir its great for lungs & confidence.
Distraction: hobbies, arts & crafts and reading.
Something to love like cat or doggy, i look after my daughters two pugs once or twice a week and they need walking regular-they have given me back so much life and i get lots of cuddles too!!
Rescue pack! Always have one in the cupboard so at start of infection you have Steroids and anti-biotics.
Sense of humour! 😊
Definitely going to need one with this horrid disease!
Good luck with everything-you are young and once you get strong and determined again there be no stopping you.
Love Janzo. 💐
Awwww jan thank you so much for your positive feed back and support x yes you are right I am in right track and being given all the help finally as it’s took a while so feeling positive for the future just get so low been in a rut and finding it hard to cope I lost my mum and that took over my whole being so there fore haven’t really understood my own condition or managed it well ive put on lots of weight and feel tired and sluggish I need to fighrbback and get my life back with this debilitating condition. I’ve let it beat me and need to stand up and challenged it however due to always being on steroids I over eat and then can’t breath then over eat again I’m fighting myself and not sure whos going to win xxx
Its natural to comfort eat when you are grieving-so be kind to yourself.
Its very hard to loose your mum and now you have this to deal with too-life can be so tough but I hear that you are getting back on track and you will be helping yourself as soon as you are up to it.
One step at a time towards your goal-even a short walk of five mins per day can make the difference to how you feel.
You will get there!! You will win and we are all on your side cheering you along-you can fo this.
Love Jan x
Hi I also have stage 4 copd and please don't give up I am on oxygen 24/7 and this disease does get you down at times but it is manageable you just have to realise that there is lots of things you can no longer do but there are people a lot worse than you the panic attacks will settle down and you will learn to cope I xant walk very far so got myself a mobility scooter so I can still walk the dog and get out and about I still drive and enjoy that also went back to model making that I did when younger just anything to keep your mind busy hopve this helps
See if you can get on a Pulmanary Rehab course as that will be a benefit as you will learn a lot of techniques to help you manage your COPD. This will help you reduce the flare ups and so cut done on the steroids. I have to constantly fight weight gain every time I'm on the Preds but I'm finding the PR really good.
As you are only 44 it's probably hard for you to avoid people with coughs and colds. My main aim is to avoid them at all costs. This winter I've been pretty lucky and touch wood not needed Antibiotics or steroids since about June last year.Also I take Antihistemine one a day permanently. I have recently stopped taking a steroid inhaler and take one called Spiolta respimat which is non steroid. It's all about accepting the disease unfortunately, and with trial and error things should improve for you hopefully. As suggested, try to get on a rehab course , it will help you a lot.
All the very best.
Yes you are very right it’s trial and error and has mainly been error up u TIL now x I have many things in place for me I need to have a diet plan which I’m going to research I figured I should write down pros and cons like what’s bothers me and whatvtondonto correct and change it x I need to be positive x
I am just out of hospital with COPD and Influenza À I was on oxygen 24/7 plus steroids am now home and feeling a lot better.My question is has anyone suggested that you get a pneumonia shot its a v acine and you need to take it only once .... ask about it.
I am also on relvar and espiriva plus salbutatmol the relvar and espiriva hold me all day and night and I only need the salbutamol occasionally.
Please try and keep positive long way to go before you need oxygen.
One thing that I can say is that you will benefit greatly from your pulmonary rehab course you will learn how to take control and manage your breathing more efficiently one thing I will say is try and practice pursed lip breathing this will help you when you become very short of breath will also help you with every aspect of of daily life take care duff
There is hope ,i know it sometimes seems hopeless but we must fight back ,a positive mental attitude is needed and lets not forget this illness doesn't define us, dont give up , its all about quality of life ,sure theres things i would like to do but everyone has limitations, get help jodi theres nothing wrong with asking for it when you need it x
Hi jodicharles, I know how you feel, I have been there many times, but now I have found a way to help reduce all those pesky drugs like prednioslone that makes your weight baloon out and all those antibiotics and hospital stays.
I have managed to cut down the number of flare-ups by using natural easy ways that also helps with the mucous issues.
It's time to break the COPD flare-up cycle
They are very helpful people on that website and I purchased the Aerobika and what a really wonderful easy product to use with success.
I also use ClearLungs herbal capsules purchased from Amazon.
I do a lot of research on the internet as a BioEnergentic Researcher and I have found some other wonderful natural ways of interest to help with my own condition.
Just having a read through this morning feeling a bit sorry for myself. Dr put me on carbocisteine and it's made me so sick and I was being sick before that with the mucus. Just noticed you use a herbal product ca,led clear lungs so went to have a look on a Amazon. Which one do u use please. Like you I dont want to take too many heavy drugs. Have you any thoughts on herbals for panic attacks mine are very severe. Looking forward to hearing from you. Take care
Do u jot use anything from doctor? I have moderate copd what do u have if u dont mind me asking? Thanks
I think that you mentioned that you have a consultant. Have you had a ct scan? You have had a lot of good advice from copd people on here. I have a different condition and I wonder if, as you are having so many exacerbations, there may be something else going on. Azithromycin can be very good at keeping infections away if it is targeting the right bug. I took it for five years. It worked - then it didn’t. If you haven’t seen your consultant for some time I would suggest ringing their secretary and getting an appointment. Then you can ask them about all of these infections. Respiratory nurses are very supportive I believe but they aren’t experts, neither are GPs.
welcome to this wonderful group Jodi I am at severe stage and main thing I suffer from that makes it worse is anxiety. so I try to deal with that best I can . I have opened up to all my close friends and all of them have been understanding and are there for me x god knows what inhailers I’m on so many lols . just got a scooter for Sumer months to get out and about x so my advice sweetie is try your best to keep posative never rush for anyone! they all rushing too fast for their graves 😱 we are the lucky ones as going slower we get to see the beauty around us that they are all missing by passing by to fast x regards Davy boy xx
If you read a few posts you will find quite a lot of us felt the same as you do at the beginning. How long have you quit smoking? If this was recent this could be causing a lot of your symptoms. Yes there is light at the end of the tunnel! When I was first diagnosed I couldn’t walk two steps without having to stop to get my breathe. I felt anxious, depressed and felt like this was how I was going to be forever. I now walk 3-8 miles a day...yes I have to stop sometimes...I haven’t had a chest infection for 5 years...sometimes I still get a bit anxious...I’m no longer depressed...I feel healthier now than I have felt for maybe the last 25 years. Ask you doc for Pulmonary Rehab, look at your diet see what you can change, look at your weight, do you need to lose or increase weight? Little adjustments make massive improvements. 💕
Hi Jodi, I have bronchiectasis, not COPD. I regularly cough, sometime all day and most of the night. By doing my exercises and bringing up all the phlegm (a lot!) and with this I manage., However, I was on Azithromycin but stopped taking it because my eye lids felt so heavy that my eyes only felt half open. One of the side effects is myothenia gravis (sorry about wrong spelling) which affect the muscles. You need to talk to a consultant about this and the side effects, sometimes they are worse than the disease they are meant to cure/help I keep myself fairly healthy with exercise which may not be an option for you. However, the most important thing is to stay positive. Positive thought goes a long way to keeping us in the most health that our bodies can manage. You really need to talk to someone else with COPD. You also need a hug so at a distance, please feel a hug. Good luck and best wishes.
I made a important discovery yesterday and since then and up to currently I have been practicing breathing gently and controlled thru just my nose and it appears to be working on my health as a smoker I have always been breathing thru my mouth I would recommend anyone with COPD look on you tube about nose breathing once you start to get used to breathing in a relaxed way you can feel it working well
Your definately not to young to have copd. I am 35 and was diagnosed approx 4 yrs ago. I am also severe stage and share ur pain. Keep in regular touch with ur consultant and though it can be hard to keep on try to be more positive and focus on the things you can do as appose to the things u cant😊. Think of the things in life that help u figgt thus disease to seek strength when u feel low. I just look at my partner and 8 kids and realise there my strength!
Hi there!. I'm 20 years older than you, & I was first diagnosed with COPD four years ago and managed to quit smoking soon afterwards. My doctors have never really adequately explained anything about the various breathing tests, or the results, which might as well be in Chinese for all I understand. I just wanted to say that breathing exercises have helped me enormously, not all at once, but gradually, and I try to spend some time every day just focused on deep breathing of really fresh air. I have moved out of London to the seaside which seems to have helped in this respect. Like you I feel I'm on a constant roller-coaster of getting lung infections which which respond to a weeks of getting blasted by steroids and antibiotics, but and then I feel great for a week or two, and then it's steadily back downhill again. I would be happy to compare notes as it were about this, and see if we both can't get this under better control. I need to make an appointment to see the consultant since they never seem to contact me, and I'm put off by the fact that where I now live in east Kent it's a hell of a journey from home to the nearest hospital! How is your care? Do you find it easy to talk to your GP or to see a consultant? Anyway, I send my very best wishes to you.
p.s. Breathing with your lips pursed and pushed out is also a very good, easy, practical remedy for when you feel short of breath, or get scared.
There seems to be some contradictory information in what you have posted. You mention they told you that you were moderately severe which would seem to imply you are severe but not on the lower end of the range for severe but either way that would mean you are only Stage 3 as Stage 4 is very severe and don’t think anyone would describe that as moderately severe. You then mention your your FEV1 is 1.54 (66%), so if that 66% is 66% of predicted than that would put you in the moderate stage, as moderate is from 50%-79%, and you are pretty much right in the middle of that range which would mean you are stage 2. Do you have a copy of your test results and if so is the 66% your FEV1% of predicted? Next time you see your doctor you should ask if your FEV1 is 66% of predicted and if so mention that you understand that 66% is stage 2 moderate, and not stage 4 and get his explanation.
Of course I am not a doctor and have not seen your results so there very well may be information I am not aware of that would account for what you have been told.
If you have the results of your spirometry you could cover up you name and birth date and post them here and there are people here who could help you interpret them or at least give you some questions to ask to clarify things.
You mention the infections you have had and am curious if you were free from infections when you had your spirometry as if you were having an exacerbation or infection when you had the spirometry that could also effect the results.
If you FEV1 is actually 66% of predicted than there should be things you can to to really improve your situation, but do realize how daunting it can be to try to get motivated when you are feelin very unwell.
Hello Jodi my name is James and I am 72 years old and stage 2 emphysema for the last six months and I live in a suburb outside Dallas Texas. I also have on again off again pneumonia and six way open heart by pass, between the three I have my down days, fortunately for me I have a supporting wife and a small clock repair business that keeps my mind off of my health issues. What has helped me the most is to do what ever exercise program I can do and to keep repeating the exercises at least 3 times a week and always trying to do just a little bit more exercising than the last time, and sometimes I have to start over at the beginning but as Teddy Roosevelt said, NEVER GIVE IN, NEVER GIVE UP. I believe in that because I graduated from high school in a wheel chair and was told by doctors I would never walk again but after three years of therapy I went to college and when I got that degree, I walked across the stage on my own. I have faith in you Jodi, so please don't give up or give in!
Hi Jodi, I'm a Bit late coming in here. I have been so Busy each day with Exercise Classes, The Gym and Going Out during the Day. I say all this as I was on the Transplant List for 3 Years, I come off on 19th March, as I can no longer wait for "The Call" never had 1 call, so I need to Live a Life and go Abroad to see all my Family. I am a Young 67, and have Stage 4 Emphysema, ( Diagnosed 2013). Had 4 Valves in Right Lung,(last Year) For me they worked. I have fought to stay Healthy and as Fit as I can be, The Time on the Transplant List gave me the Positivity to be as well and Fit as I can be for A Big Operation. So I decided I must carry on with my " Well being" Positive Way of Life. I am a Staunch Supporter of All Transplants and do a lot for the BLF through my Breathe Easy Group.
It is the only way to get through this Deliberating Lung Disease. I wish you a Positive way ahead, you are Young and I am sure your "Hat" will say, " I will Fight This" Good Luck Hun. Love n Hugs . Carolina. xxxx