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Struggling with copd

Jodicharles profile image
94 Replies

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

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94 Replies
Lemon7 profile image
Lemon7

I am newly diagnosed copd and so can't offer advice as such but I want to wish you well and hope so much things can improve for you soon.

Jodicharles profile image
Jodicharles in reply to Lemon7

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

Lemon7 profile image
Lemon7 in reply to Jodicharles

Good luck with all the new things you Will be doing.

maddyo2 profile image
maddyo2 in reply to Jodicharles

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

Jodicharles profile image
Jodicharles in reply to maddyo2

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

Spacecat1 profile image
Spacecat1 in reply to Jodicharles

Maybe try exercise at home. Hubby bought me a machine that I can walk on I at different speeds t does help me I'm at stage 4

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?

Jodicharles profile image
Jodicharles in reply to

Hi apeter I’m not sure what you mean alpha one? All I know is I have stage 4 copd moderately severe and am constantly getting pneumonia pleurisy and bronchitis.... I get well for a few weeks then low and behold another chest infection and I’m sick of steroids they make me feel weird

in reply to Jodicharles

Alpha one antitrypsin deficiency is a genetically inherited disease that causes copd.

Jodicharles profile image
Jodicharles in reply to

I’m not entirely sure tbh....however my aunty has copd also I shall ask my consultant

Jodicharles profile image
Jodicharles in reply to Jodicharles

They said I would be in those tablets 3 x a week but need an ecg and bloods first

hypercat54 profile image
hypercat54 in reply to Jodicharles

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

Jodicharles profile image
Jodicharles in reply to hypercat54

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

Jodicharles profile image
Jodicharles in reply to hypercat54

Also says fvc 2.84 (104%)

R 54 do u u derstamd what thisball means I’m still learning

hypercat54 profile image
hypercat54 in reply to Jodicharles

fvc stand for forced vital capacity but I am not sure what it means. The import figure is your FEV1 which is your lung function so what is that? x

Jodicharles profile image
Jodicharles in reply to

Yes I am young for having copd however smoked very heavy and unfortunately the area I live in is considered the highest in pollution in England

gingermusic profile image
gingermusic in reply to Jodicharles

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.

Boeta profile image
Boeta in reply to gingermusic

Dr Noah Greenspan is a good source of information

O2Trees profile image
O2Trees in reply to gingermusic

She IS young to have copd at stage 4. So not the same as you who has got to stage 4 at 69. But good advice. :)

Jodicharles profile image
Jodicharles in reply to gingermusic

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

Jodicharles profile image
Jodicharles in reply to gingermusic

They are also going to change my meds and try me on azithromycin as I keep getting infections yet no longer smoke

gingermusic profile image
gingermusic in reply to Jodicharles

Thats good that you have stopped smoking as had you not you would have got worse a lot quicker. As it is any damage to your lungs is now permanent.

Hope they find you an antibiotic that really works for you.

angie105 profile image
angie105 in reply to Jodicharles

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.

Jodicharles profile image
Jodicharles in reply to angie105

It is frustrating and hard to understand I don’t even get what my fv means it says fv1 1.54 (66%) my aunty also has copd

Jodicharles profile image
Jodicharles in reply to

I’m not sure if I have alpha one I shall ask my copd team I know all they keep saying is I’m very young however smoked heavy for years live in the worse polluted area in England and my aunty also has itvso could be genetic xx

les4560 profile image
les4560

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!

Jodicharles profile image
Jodicharles in reply to les4560

Awwww thank you I’m so glad I have joined as I need to talk with people who are in the same situation as myself as my family don’t understand and research isn’t great so talking to people who have the same condition I’m hoping will inspire me thatbthere is hope x

les4560 profile image
les4560

you are so welcome and please be careful with what you research for some of that stuff can scare the heck out of you! I do have a question are you not on oxygen?

Jodicharles profile image
Jodicharles in reply to les4560

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

gingermusic profile image
gingermusic in reply to Jodicharles

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.

Jodicharles profile image
Jodicharles in reply to gingermusic

Thank you I appreciate all your reassuring kind words xx

les4560 profile image
les4560

im so glad you got on here for I think everyone can help you in one way or another but I was asking about oxygen because my stats drops and im scare I will be put on oxygen but I wont know anything until I see my pulmonolgist Tuesday!

Jodicharles profile image
Jodicharles in reply to les4560

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

les4560 profile image
les4560

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

Jodicharles profile image
Jodicharles in reply to les4560

Awwww Marjorie I’m sure if it was something to panic about they would have wipped u in quick time x try to be calm and positive as much as you can I know it’s hard as I’m there myself however will keep my fingers crossed for u x please let me know how u get on xx

les4560 profile image
les4560

thank you so and I will!

Jodicharles profile image
Jodicharles in reply to les4560

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

les4560 profile image
les4560

thank you so much-hope you start feeling a little bit better soon!

ANDREA-JOY profile image
ANDREA-JOY

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

Boeta profile image
Boeta in reply to ANDREA-JOY

Please, what do you use in nebuliser?...i would suggest you find a natural source of vit C too...in pill form it can irritate your tummy...Ester C works for me...believe me...YOU ARE ON THE RIGHT TRACK....

Jodicharles profile image
Jodicharles in reply to Boeta

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

ANDREA-JOY profile image
ANDREA-JOY in reply to Boeta

Hi there I use saline and ventolin in the nebuliser.. at the moment till I see my lung consultant..x I'm also on formoterol, spiriva respimat, and ventolin inhalers, and amoxicillin500. Antibiotics.. long term thanks..

Jodicharles profile image
Jodicharles in reply to ANDREA-JOY

Awww thank you for your reply....I seem the same I’m always catching everything also always in antubiotics and steroids....looking forward to trying these new meds to help prevent infections this condition gets me down so much. Trying to be positive thanks for your feed back. Xx

Janzo54 profile image
Janzo54

Hello Jodi

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. 💐

Boeta profile image
Boeta in reply to Janzo54

Agree...lovely...i cuddle my cat all the time...and my labrador keeps me up and going ...lol

Jodicharles profile image
Jodicharles in reply to Janzo54

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

Janzo54 profile image
Janzo54 in reply to Jodicharles

Hi Jodi,

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

Ozzy16 profile image
Ozzy16

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

Jodicharles profile image
Jodicharles in reply to Ozzy16

Thank you I appreciate all you have all said x I’ve really got to fight back and learn and cope and find a way forward xx

Perce profile image
Perce

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.

Jodicharles profile image
Jodicharles in reply to Perce

I have been referred to pulmaonary rehab physio and psychology hoping this will help x steroids have made me gain weight and it gets me down so much as but need to stop winging and find away they are changing my meds to a anyiinflamitory and antibiotic to prevent xx

Perce profile image
Perce in reply to Jodicharles

Brilliant, hope you get a place on PR soon. There are loads of different meds out there so hope you find a good combination soon.

Martinack59 profile image
Martinack59

Start excersise and gradually build it up there are lots of pulmonary rehabilitation sessions aswell plus eat lots of good healthy food watch your portions your breathing will get better losing weight and excersise

Jodicharles profile image
Jodicharles in reply to Martinack59

I’m going to research a diet plan for patients with copd it’s time to fight back and challenge my condition and regain my health to the best of my abilitybxx

Grayjay profile image
Grayjay

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.

Janzo54 profile image
Janzo54 in reply to Grayjay

Thats interesting about Antihistemine-which one do you take and does it help?

I have a post nasal drip and wonder if it will dry things up a bit and aid a good nights sleep!

Jan

Grayjay profile image
Grayjay in reply to Janzo54

Hi Jan

I take "One a day" with Loratidine. I don't get so many coughing fits with them. OK'd with the

Resperatory nurse. Buy them anywhere. I get mine from Superdrug. Almus 10mg in packs of 30.

Janzo54 profile image
Janzo54 in reply to Grayjay

Good idea might try them!

Ive just had an operation and coughing is a pain! Nothing else works-thanks for the tip.

Jodicharles profile image
Jodicharles in reply to Grayjay

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

Grayjay profile image
Grayjay in reply to Jodicharles

What you should make priority is ask your GP to get onto a Rehab course. That will put you on the right path. ☺

Ragrug profile image
Ragrug

Hi

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.

Ragrug

O2Trees profile image
O2Trees in reply to Ragrug

Pneumonia jab lasts around 10 years. Im now on my second. Maybe the thinking of that has changed but I still see many saying it's once in a lifetime. I know several who have had a second one.

Ragrug profile image
Ragrug in reply to O2Trees

Interesting...maybe it has changed...my GP and consultant have both said it is for life.

O2Trees profile image
O2Trees in reply to Ragrug

I think that may be the official position - I only know Ive had a second, and some others have too.

Duff1953 profile image
Duff1953

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

soulboy118 profile image
soulboy118

First thing is to get your meds sorted ,get on a pulmonary rehab course and get help with the anxiety, you can manage the copd ( im at stage 4 myself) ive just come back from spain i go out every week with my mates and have a good quality of life even having this illness

Jodicharles profile image
Jodicharles in reply to soulboy118

So there is hope like I have stated u have a good quality of life with stage 4....I’ve just got so low n feel helpless x I have everything in place just need to do this and fight back x

soulboy118 profile image
soulboy118 in reply to Jodicharles

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

lovejoyliz profile image
lovejoyliz

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

trudellmed.com/aerobika

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.

Take care

Hugs

in reply to lovejoyliz

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

lovejoyliz profile image
lovejoyliz in reply to

Hi Dog12, The one I use is good and I see that it is not available until stocks come back. You can order it from eol4health.com/store/p41/cl....

For Panic attacks:- amazon.co.uk/Palpitation-Ne...

I only ever use natural remedies and treatments

Regards

in reply to lovejoyliz

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.

Jodicharles profile image
Jodicharles in reply to

That’s the medication they want to try me on as I keep getting infections yetvhave given up smoking I hope it works I’m sick of being sick

davecarol2 profile image
davecarol2

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

Jodicharles profile image
Jodicharles in reply to davecarol2

Thank you so much x I’ve hit the lowest point I can go so there’s only one way and that’s up I have to find the energy n strength to get my health on track however finding allnyourncomments insoritaional xxx

laines profile image
laines

Hi Jodicharles,

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. 💕

Jodicharles profile image
Jodicharles in reply to laines

Thank you your words are reassuring xxx

Lilianne profile image
Lilianne

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.

Lilianne.

x

Maddix profile image
Maddix

I have had copd for about 11 years I have a few good days,then about a week not being able to do much,try some lung exercise. Speriva respimat has helped me

Boeta profile image
Boeta

Hi...look up Dr Noah Greenspan on internet....very informative...know and manage your sickness and the battle is half won...God bless

Janzo54 profile image
Janzo54

This sounds good can we buy it off script?

Janzo

jgo56 profile image
jgo56

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

les4560 profile image
les4560

hi there pretty lady just wanted to know if you are feeling a little bit better after being on this site? I know I do and Im always stalking this site for new stuff to learn (oops I hope its ok to stalk this site LOL)!

les4560 profile image
les4560

this post was to go to you Jodi, LOL but I think it might of went to jgo56!

joyce74 profile image
joyce74

I have been taking Azithromycin, 3 per week since last November and the results have been amazing for me. Mucus dried up. Have had stomach upsets but not taking amoxicillin and steroids every month as I had in the previous 10 months. Hope they work as well for you.

Slaughteress profile image
Slaughteress

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!

Simonpete profile image
Simonpete

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.

jackdup profile image
jackdup

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.

CLARAmay profile image
CLARAmay

How long since you gave up smoking, I have copd and sleep apnea so that’s double the wamey, I have swollen ankles, back progressive injury from work I just do hydrotherapy, pysio see a Pyschirist and Pilates soon all to trie and help.

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!

Hacienda profile image
Hacienda

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

boatmodler profile image
boatmodler

hi

my inhaler is trimbow twice a day also on 15hrs a day oxygen ask your dr about oxy it will help to reduce mucus

trimbow helps to reduce your flare ups

Johnsteel profile image
Johnsteel

Hi sorry to learn your at your whits end but keep being positive and strong. I am at stage 2 with copd I struggle in morning when I get up have to use my inhaler finds it hard to climb stairs and lifting .I hope this helps you john

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