Stage 3 to 4
Does anyone have this stage and managed to keep it there without progressing. If so, could you tell me how long, and what things you've done to maintain it.
Maintaining level of copd: Stage 3 to... - Lung Conditions C...
Maintaining level of copd
Written by
Batbara
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51 Replies
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Im stage 3 Batbara. Have been so for about 12 years. FEV1 currently around 37%, so I'm hoping for a few years more 
O2 you are a positive lady and are often a great inspiration to me as I know you too have joint hypermobility syndrome to contend with, like me. Well done to you. I am due to have another Lung Function Test in January 2015 and am awaiting the results of a chest CT Scan I had recently. I am trying to be positive but judging by my shortness of breath, I have an awkward feeling it aint gonna look so great! Anyway, keep posting. You are a great source of strength and I am always looking out for your input! stillmovin1
Thank you stillmovin', Im touched.
Hope so much you get a better result than you are fearing.
Do you need a medicines review with your GP? Sometimes better treatment helps a lot and gives a feeling of being far more in control which for me is a big part of the struggle.
Very best to you,
hi Barbara, the hospital say i'm on stage 3-4, my g.p since then, says stage 4,,
firstly can i say that in my view these are just grades that are given by the amount of infections, hospital visits, exacerbation etc. which in my case were exceptionally bad in over a year.
i had a collapsed lung and pneumonia, roughly about year and a half ago, this took a very long time to clear, and was in hospital with infections etc almost on and off, for about a year.
i believe i was given this grade because of this.
but i have gradually recovered from this , but obviously it has left its mark.
in the last 6 months i have had fewer infections with two hospital stays of a week each time, much better than of the previous year.
in my opinion, firstly stopping smoking,trying to exercise,and now eating a far better, lighter, but nutritional diet, i believe these are the three main things in my case.
i take all prescribed medicines, regular, just as prescribed, i,e oxygen, nebulisers, the various inhalers, all tablets etc [i have underlying illnesses too, that need medicated ] but i never miss a dose.
i take manuka honey 24+ every day,whether it help i don't know, but i believe it does, and thats what counts. i also swallow bits of raw garlic, cut to the size of a pea. i know that in these two things there are many natural antibiotics .
this might not be every ones "cup of tea" but i take the garlic raw like this [you cant taste it], as the antibiotic ingredient in it is allicen, and when boiled or cooked in food, this allicen is destroyed.
these are just two things that ,i myself believe helps.
i try and keep as fit as is possible under the circumstances, [i can walk further now than i could a year ago] which is not far
a P.R. course can help with this.
this is, as im sure you will be aware, one horrible illness. with many ups and downs.
but i believe that we need to become very strong willed, with strict personal determination.
i now believe , that the mind has much to do with the way we feel, i find that "always having something positive to look forward too" def. helps. try to keep hobbies going, or developing new hobbies which you are capable of. the forum itself helps a great deal.
accepting that we have this illness, then adapting a positive nature, in trying to look on the bright side, rather than dwelling on the illness itself.
most of all, maintaining a sense of humour, as i've heard many say,,, if you didnt laugh, you would cry
off course this is not always possible, due to the nature of the illness, but it most definitely helps
lastly, whatever "stage" you are on it , it is most definitely not a death sentence, i have heard it say, "i wont die FROM copd " " but i will die with it !!!! "
kindest genuine regards,,jimmy xxx
.
p.s there will be far better posts than mine, to follow, more experienced writers in explaining things better than me, this is where this forum has its great benefits, people from all walks of life, but all with one thing in common,,, copd. love jimmy xxx
Jimmy what a fantastic answer, helped me a lot, years ago a friend had leukaemia, he had all the conventional meds, but also ate a bulb of garlic a day, 35 years later, still going strong, he says because of the garlic, I believe in the honey also. Hope you've a good Sunday ahead of you.
I think jimmys post is full of sound advice Batbara, hope you've got a good Sunday ahead of you too x x x
You're wrong there Jimmy - your post is BRILLIANT and I have learned from it. THANK YOU!!
Jimmy what an inspiration you are! Great to read your post and it helped me and I'm sure, many others. Well done to you.
PS I wish I could have manuka honey. Each time I take it, my acid reflux problem flares up! But I agree, it has some well-known healing properties.
stillmovin1
hi still movin,
its a pity about the acid reflux, its a rotten thing that to put up with as well, its seems its just a case of trying to find out whats best for us, for all the many other probs as well,,thanks for the kind post, and hope you find something to help this,, all the very best jimmy
" Hello to you Stillmovin... I have just read your post regarding your COPD and Manuka honey, and your not being able to take it due to the fact you have reflux problems....well help is on the way I have COPD and was diagnosed just a few months back stage4 fev1 27. and I was diagnosed very late into my condition the reasons I are prefer not to give due to the sensitive nature, plus you cant turn the lock back or alter the out come. But!! I have not given up trying to improve my condition, so I take manuka capsules daily as I suffer with a hiatus hernia and have a duodenal ulcer and find the capsules a lot kinder on my stomach. so I am hoping maybe they might help you too. I will send you the links to two sites. I usually buy from Amazon, but have just discovered a cheaper supplier. so will add that link for you also. Best of luck to you Stillmovin...Megan "
quickvit.co.uk/catalog/prod...
" Here is the link for the Amazon one too for you.. Good Luck ..Megan"
amazon.co.uk/Lifeplan-Activ...
Megannell, how kind of you to think of that! I will definitely give the capsules a try. I have lost so much weight with having to cut out the triggers for this acid reflux disease I have and I am fed up with it! Yes, the doc said I had a small hiatal hernia and relaxed sphincter muscle. Runs in our family. xx stillmovin1
Excellent post Jimmy, thank you
just edited your name right
in reply to jimmyw123
What a brilliant answer Jimmy.
I quite like the idea of eating garlic. Might give it a try.
As for what grade. I am not sure what I am apart from being told by my Consultant that my COPD is now very severe.
I still manage to get out and about, albeit with my oxygen in tow and using my mobility scooter for any great distance.
My husband and I are off to Llandudno tomorrow morning on a 5 day National Holidays Coach trip. Oxygen ordered and mobility scooter hired.
All prepared like a good Girl Guide should be!!! lol
jimmyw123 in reply to
thanks dangirl, hope you have a great time at Llandudno," all prepared like a good girl guide 
" i like it lol , but it goes to show what you can do if you put your mind to it, good luck to you dangirl , let us know how you get on :),, scooter, oxygen,, all ready for the off, now enjoy,,,, jimmy
Lyn45 in reply to
Have a wonderful time
Just wonderful Jimmy. A really positive reply and one which hits me because I have allowed my exercise programme to drop off substantially. I need to restart......now. Thank you Jimmy.
OH MY GOODNESS JIMMY. What you just wrote means so much to me, and as you can see others. I do take the manuka honey everyday. As for the garlic I will now add it to my vegetable juice that I make every other day. Yesterday I started to feel a little like my body wnted to get sick, so I took my zinc, vit bs, c, d, and fish oil. Trying to keep things at bay. Also my neighbor stopped by and then mentioned she had a cold. I guess maybe she forgot I have copd. It really upsets me that people just don't get it, even when you've already explained to them how serious a cold can be for you.
I m not on oxygen at this time. I do push myself and go to the gym everyday. My doctor told me to do what I'm doing, but I still wonder if I can keep it at this stage for a long time.i really scares me to think I will be unable to do much of anything at all. As it stands right now, I have to do thing more slowly, and take more time.
Anyway, I want to say thank you again, for all the thoughtful, and helpful information you shared with all of us.hope you have a great Sunday, and continued health to you.
Hugs! Barbara
PS. Thanks to everyone else who took the time to respond.
OH MY GOODNESS JIMMY. What you just wrote means so much to me, and as you can see others. I do take the manuka honey everyday. As for the garlic I will now add it to my vegetable juice that I make every other day. Yesterday I started to feel a little like my body wnted to get sick, so I took my zinc, vit bs, c, d, and fish oil. Trying to keep things at bay. Also my neighbor stopped by and then mentioned she had a cold. I guess maybe she forgot I have copd. It really upsets me that people just don't get it, even when you've already explained to them how serious a cold can be for you.
I m not on oxygen at this time. I do push myself and go to the gym everyday. My doctor told me to do what I'm doing, but I still wonder if I can keep it at this stage for a long time.i really scares me to think I will be unable to do much of anything at all. As it stands right now, I have to do thing more slowly, and take more time.
Anyway, I want to say thank you again, for all the thoughtful, and helpful information you shared with all of us.hope you have a great Sunday, and continued health to you.
Hugs! Barbara
PS. Thanks to everyone else who took the time to respond.
Barbara, it sounds like you are doing all you can and should be to help yourself so well done to you and keep going. I know what you mean about finding it hard to keep up. I have trouble disciplining myself and there are always so many other things that need done AND the regular exercising/walks seem to take up so much time but I know that they are absolutely essential for us to do, so keep going. All the best to you.
stillmovin1 xx
hi barbara, thank you for your kind thoughts, and your appreciation, i really just posted this off the top of my head at the time, and was quite amazed at the response,
but it sounds like you are well on the way to keep this at bay.
i thought your posting was one of the best questions asked on this forum, one that effects us all, no matter what stage.
coincidentally i usually have porridge in the morning but recently have had sardines/mackerel/pilchards [not altogether lol ] on toast in the mornings, for exactly as you say,,,, the fish oils!!
i also like the idea of your veg, juices.
i have just had stovies, with onions with half the meal,being carrots,peas, broccoli,, and brussel sprouts, now with this abdomen distension it causes me a lot of wind,,,,so its maybe a good job i stay on my own, especially after that meal
i get the wiltshire farm foods, but make a pot of "something", quite often,although i'm no alan ramsay i can make a nutritional meal.
another wise thing you have mentioned is trying to dodge infections, i think we all get frightened by these, i know i do but as you say,trying to keep away from folks with colds , keeping the old hands clean etc, is very sensible.
but i do believe we cannot live in a "clinically clean" environment, and need to try build up some sort of immunity,i believe the things that are mentioned in this thread can help/aid this, this is one reason i don't dive for the emergency meds, unless absolutely needed , although they are a life saver at times!!,
we can all take these antibiotics and steroids often when we just suspect an infection, sometimes we need to, but if any doubt , i find a sputum sample is best , this off course will determine IF theres an infection, what type of infection, then the proper antibiotic for the job can be prescribed. as in my opinion too many needless antibiotics can have the opposite effects.
as you will see by other posts how important exercise is, i am an oap, and know there are many other oap,s on this forum that are very severe, but battling on exceptionally well, simply by exercise ,[ see helingmic,s post hes an oap, but its a real positive post,] these folks are an inspiration to me, this is where the forum members all rally together, including yourself, and each one of us benefit from each other. .
dont be frightened barbara, you will stay on that stage or even reverse it as helinmic remarked !! by doing, just as your doing., and being positive, not forgetting a sense of humor
a big thanks for such a lovely, informative thread barbara, i sincerely wish you well, and look forward to your posts, you have in fact helped me,
i send my love kindest thoughts ,, jimmy xxxx
oh, i just noticed a double post ? ,,, well i,ll just make use of this for a wee smile barbara, as you might be well aware of barbara im scottish,im a wee jock lol [or a wee joke more like ]
when i mentioned haggis at one time, there were many who didn't know what a real haggis was, now if freshly caught from my local pentland hills!!!, they have long legs at the back and short legs legs at the front, this is why they can climb hills very fast but coming down hills they are awkward and very easy to catch [believe me and you'll believe anybody ]
the real ones are round like a football, and you can actually kick them!!! .
[and once you've eaten them, you'll wish you hadav kicked em ]
only a bit fun, lots of love jimmy,, xxx
I'm lost! Still trying to figure out what an oaf means. You mentioned that in your earlier post. I have no idea what that is. I'm from the United states so maybe we use different words for different things.
I actually wrote a long reply to you, but the only part that showed up was the first line. Im not sure if I did something wrong.
i think you might mean o.a.p,, its "old age pensioner " hope that clears that up for you barbara,, love jimmy xxx
Oh, what a relief! I thought it was another disease or illness. Thank for clearing that up jimmy.
I was diagnosed 10 years ago for the first 3 I stayed stable then I got the flu this knocked me for six. I would recommend if you smoke give up, have your yearly flu jab, exercise and try to eat healthy but most important keep away from people with flu.
Nothing more u can do just use your inhalers and nebulizers
I was diagnosed just over 3 years ago, Stage 4. After being put on the correct medicines I haven't got any worse since then. I keep active and try to do everything I did before being diagnosed. I treat it like someone would if they had lost a leg, I just get on with things the best I can with what I've got. If I decide to do something I will do it, however long it takes. I eat full meals but luckily don't put on weight. My other half adds various beans and pulses to my meals and lots of veg. I don't stick to any diet. I eat what I've always eaten ! The main thing I do is keep active.
I hope that helps.
Good advice puff. I guess I can maintain since I am keeping busy and exercising everyday.sonds like you have a good attitude also. I have found that to be very helpful with our condition. Thank you for your reply.
Barbar
Barbara, I was told my COPD was severe. I maintain it wonderfully by going to the gym 3 times a week. Now please take courage, because I read that instead of being irreversible, researchers have found it ca be reversed somehow by exercises. This I can witness, exercises do wonders. So be positive!
That is totally music to my ears! It is incentive to work harder!
punkybeauty, Work harder, but on your own limitations. if you find it too hard, ease it a bit! You will see that by doing this, you will be able to carry yourself further by being gentler to you body
I have to learn a proper pace and I think it is important to figure out how much I can do according to the weather conditions. Some weather makes breathing harder and other weather make breathing easier. I can't help but wonder if the different weather conditions will make a difference in the pulmonary function tests too. I am new to this so I am still trying to figure out many things.
Pukyb, You are so right. The wind and rain does impact on your breathing. YOu have to take care of it. I don't know if a buff (snood, tube) will protect your mouth, I have a buff you can pull it over your mouth. I don't particulary relish the taste of textile (!) but I suppose a cover is better than naught in the biting wind.
I don't know if the solution is hibernating till spring!
I can only suggest to turn to toher exercises like Qigong. This is the emdical part of martial arts. Have a look at "the 8 pieces of brocade" This is a set I do every morning for about half an hour.
That's the explanation on Wikipedia:
en.wikipedia.org/wiki/Badua...
That's the demonstration of it on YouTube:
youtube.com/watch?v=DhsU1qL...
have a go indoors!
Thank you helingmic for those words. Feel better already! I love all the positivity that was posted. We all need that from time to time.
"Awe!! Batbara, Please forgive me for responding to Stillmovin Manuka honey problems with regards to reflux problems on your post., I am so rude in just realising that I had not commented to your post regarding your COPD. Please forgive my rudeness or should I say my forgetfulness or is it old age.. But! not sure if you read my post to Stillmovin regarding my health issues and COPD. but I have stage 4 COPD fev1 is 27.I still try to do all that I did before I was diagnosed but at a much slower pace. I work hard at keeping healthy given up smoking, eat well. plenty vitamins along side a well balanced diet. plenty of rest. and a refusal to do stress. as stress plays such a negative part to this horrible disease , so a positive attitude to things is vital, as living alone can and at times does make it that bit tougher. But think you will find that there are so many thoughtful and caring people in HU. that can make all the difference to you having a good day or a bad day. I am wishing you so much luck and good fortune and hopefully listening to all that people have already said and advised you on. Your going to live forever. Have a lovely safe day. Megan!
Hello meganelle, sorry I did not get back to you sooner. I had to go to hospital, and was kept overnight. I had a fib and they had to put me on a iv drip for17 hrs. To try and get my heart rate and blood pressure down to a normal beat, and pressure. It's a little scary when all of a sudden your heart rate is 200 or more best a minute when your not even moving. So now I have more new meds....Always something.
You don't owe me any apology. Actually I have acid reflux, hiatel hernia, and all that good stuff so I can relate. It's easy to jump around when we have all these different ailments.
Speaking of manuka honey, I do use it myself.its a great antibacterial and antiviral. I take more of it when feel like I'm getting sick. I think it does help.i buy then from New Zealand called comvita.
Anyway, I am wishing you good health as well.
I don't want to live forever...just want to have some quality during the time I'm here. I sure that's what we all want.
Thanks for you post, and stay well
Barbara
Hello meganelle, sorry I did not get back to you sooner. I had to go to hospital, and was kept overnight. I had a fib and they had to put me on a iv drip for17 hrs. To try and get my heart rate and blood pressure down to a normal beat, and pressure. It's a little scary when all of a sudden your heart rate is 200 or more best a minute when your not even moving. So now I have more new meds....Always something.
You don't owe me any apology. Actually I have acid reflux, hiatel hernia, and all that good stuff so I can relate. It's easy to jump around when we have all these different ailments.
Speaking of manuka honey, I do use it myself.its a great antibacterial and antiviral. I take more of it when feel like I'm getting sick. I think it does help.i buy then from New Zealand called comvita.
Anyway, I am wishing you good health as well.
I don't want to live forever...just want to have some quality during the time I'm here. I sure that's what we all want.
Thanks for you post, and stay well
Barbara
To Jimmy 123 thankyou I have just read your comment to help someone now you have helped me, last night I felt very down and was just crying got a bit fedup, I think I was like it as cy chest feels I have playing tunes in my chest, any way I feel a lot better now as I have read what you said to that person, thank you.
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