January 2011 I was admitted to hospital because my oxygen sats had fallen to 74%
Since then I have been on prednisolone (gradually decreasing) and various other meds mostly to do with the steroids giving me high blood pressure et al.
I also suffer with depression.
I was told at the time I was in hospital that it's an allergy to my budgies that affects my lungs and although that allergy is real (had the blood tests) I cannot help but think that there is more to it than this,
When I am outside is when I feel worst, leading me to believe that pollution also plays a big part.
Anyway I digress. Yesterday I went to my GP and she gave me a 30 second walking test - my sats went down to 86% and I wasn't even pushing myself.
I am being referred (yet again) to someone that deals with COPD with a view to getting home oxygen.
What is the life expectancy for us?
With regular oxygen will I live a normal-ish life or are we only talking a couple of years?
The doctors don't seem to be forthcoming with this information.
Thank you
Marianne
Written by
mmarlow75
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In a way, your life expectancy is what you make it, which is why Docs cannot say. There is a thread on here by Carol22 where she says that she has had emphysema for 20+ years. By the way, COPD is just another term for emphysema, they are not, as some people think, two separate conditions.
You may also be tested to see which strain of emphysema you have - there is one relating to "Alpha 1-antitrypsin deficiency" and it may be that, as you are so young, you have that, but no-one will know until you have the tests.
Keep as well and healthy as you can, eat a good diet - no processed foods or junk foods; exercise as much as you can to keep the lungs moving and the heart beating; good food and exercise will help your immune system stay in good working order and finally keep your distance, if possible, from people with colds, flu, etc. and also unfortunately that may mean that you have to let go your budgies.
I was the same as you - on the treadmill, sats down to 85%, pulled off and sent down the oxygen route. Resisted like hell to begin with as I thought it was the beginning of the end - however 6 years on, I have found that it is actually just the beginning. I am on LTOT - 15 hours a day - and, once you get used to it, it is not that restrictive. I would say that I live a normalish life - there are many things that I can no longer do (and some that I am pleased that I can no longer do!), but there are many things that I can still do, albeit in a gentler way. The oxygen is to maintain the health of your major organs, which, otherwise, may not get enough, not to aid breathlessness.
Also ask your GP or the consultant about Pulmonary Rehab, which will help and you will meet others in the same situation.
Good luck and know that, in some way, you are mistress of your own fate.
Excellent, positive response Blodwyn. It's how we all need to think to compensate in some degree and have a fighting chance of living a life not beset by doubts, doom and gloom. Adapt!
I had seen that and yes I have been told I have Bird Fancier's Lung..
I used to have a Nanday Conure - he was so affectionate and I am sure he thought he was human! We had a huge cage for him which was left open most of the time - when we shut and 'locked' it's door he always managed to find a way out. He would sit on the rim of my dish and share my morning cereals with me. I would put him in the cage if i went out but always on my return he would come 'running' up the hallway towards me saying 'mummy's home! mummy's home! He also loved sharing our baths and showers. I was so sad to have to leave him behind when I came back to my native England
Hi I am 66 and have had a bad chest since a young child, I worked until I was 58. Try and be positive look after yourself, eat a healthy diet and excercise as much as you can. Do what you can when you can.
take care
polly
Hi Mariane, we have the power to influence our health with or without a lung condition, this is very real, I am nearing a decade now and intend to be living for at least another decade, in addition my lung condition may not be the cause of my death and this may well apply to many other people with damaged lungs. I highly recommend that you ask your doctor, consultant or nurse for a referral to a pulmonary rehabilitation course, this will give you the information you need to help improve your quality of life, help you avoid further lung damage and slow down the progress of COPD and deterioration in health.
There is plenty of life to live even with damage lungs.
I did get referred (well really it was a self-referral)but my heart rate was 118 at rest so they decided that I could not continue, it was too dangerous for me.
A pity you did not stay on the course Marian, as the exercise is just part of that course you would have missed out on so much more. Maybe you can get another referral just to do the education side if you cannot participate in the exercise part of the course. Or if you phone the BLF helpline they may still have copies of living well with copd.
The PR course is not all about exercise, so much valuable information you would have missed.
Normaly PR course is GP, consultant, referral after COPD diagnosis. A senior respiratory nurse can also refer in some cases, depends if you've been on their books before I guess.
Hope you are able to get stabilised with your heart rate, having the 02 may well help you, but that is something the medical professionals need to monitor.
Take care Zoee
Hey Down, you need to go elsewhere, your comments are nasty and unhelpful.
Hi Marianne,
Try not to look on the dark side of this disease, i know it can be hard at times, but as someone close to me said, "enjoy yourself, be happy, as tomorrow, you maybe hit by a bus!" which is true. if we go down the route of how long have we got it will only make things worse.
See if there any COPD local groups in your area, or join the rehab scheme, not only do they give out good advice, make you do a little exercise, but you also meet people in the same boat as you. I still meet people who were on my course, and we stop and have a natter.
One positive is using this website, the people on here are amazing, if your feeling down, someone one here will make you smile
So be positive, do not think "when" but think "it's not going to beat me"
I have severe fears that I am going to die soon. I feel like life is a constant struggle. I find it hard to do the most basic things that others take for granted.
I gasp for air upon walking 100 yards outside. I have to double over frequently to regain my composure.
Sometimes I feel that my husband thinks I a being lazy or just not keeping up on purpose.
As for my family,I do not think I can burden them with the way I feel.
Dying is a real possibility and yet people seem to want to "gee me up" say I am being negative or just not see that it's real.
Marianne I think you need to discuss these fears and symptoms with your doctor and the consultant, there may be an unrelated health issue occurring with you which may well need investigating further.
My husband attended a refresher course of PR recently. His heart rate was very high at rest (think about 120) but they let him do the excercises sitting down and monitored his heart rate every 15 mins or so. After a few sessions he was able to do the excercises standing up with the others as his heart rate had come down a bit. Maybe that's an idea you can suggest to the people who run the PH course. Good luck
Just wanted to add that I saw a big improvement in my husbands severe copd during and after the PH course. Unfortunately he didnt keep up with the excercises so losing the benefit of it now, but it just shows that the PR course is a big help.
Hope you try again and it helps you
My Doc told me that there is that graph to estimate life expectancy and then added ... we really can't predict life expectancy ....at last maybe the NHS is starting to admit it ...the scale used by medics who scare folk like I was scared is based on previous information after all ... and with the improvements in medicine and in pulmonary rehab etc etc etc , the scale will change anyway as it loses credibility :)) looking forward to that . Was told by another medic that the scale is used to urge change of lifestyle...(eg quitting smoking, exercise etc) helpful with some folk maybe ... can't help thinking that it scares too many of us and if COPDers don't get the info from these kind of blogs, they will be isolated without understanding how much we can do to manage our condition and live longer .... we'll surprise the medical establishmnet over time, no doubt
When I was first diagnosed back in April I had to look online for information about COPD and on a number of sites it say prognosis 3 - 5 yrs from diagnosis. I was panic stricken to say the least. Once I found the BLF website and read some of these blogs etc I realised I could live for many years with it. It looks like our health with this disease is partly down to docs giving us the right medication and partly to ouselves, excercising when we can and trying to ensure we don't get infections.
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he had a bad chest they didn't realise for years it was due to the budgies. Val
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