End stage copd/emphysema

[deedee5]

SO glad I happened on this sight. I AM learning more here than GP. Everything I read so far from others is not to worry about what stage you are in, butI do worry because most don't saynif they are on oxygen or not. I HAVE been on oxygen for 2 years only when I am on the move. Told I would be on oxygen for rest of my life along with meds. I ask about stage and he says your lungs hanging by thread and stage 3, but because of age 71 it is stage 4, yet pft is moderate. Any input?

[CDPO16]

Hi and welcome Deedee.

I have end stage COPD/Emphysema. I assume you have had spirometry or lung function tests to say what stage your disease is at as age is not relevant (I am 63). Not everyone needs oxygen therapy and that in itself is not an indicator of the disease stages, but of how well your body absorbs oxygen from your lungs.

If you haven't been given any written information, look at the support and information on the British Lung Foundation web site where you may find information specific to your own questions.

On this site we all have lung disease in some shape or form, but we aren't all affected in the same way.

It's easier said than done not to worry, you aren't on your own doing that.

Best wishes

Carole

[mrsmummy in reply to CDPO16]

Excellent reply.

[robertadabell in reply to CDPO16]

What a great explanation Carol.

I'm with you on the exercisemail, doingr as much as I can.

I am advanced copd but don't ask what stage, just get out walking as much as I can.

Best wishes to all

[O2Trees]

Staging of copd is based on airway obstruction as shown by the fev1 test and fev1/fvc ratio - generally described as lung function tests or pulmonary function tests. As above, staging is not based on whether or not you need oxygen. You don't give your results for these test results but moderate as per the GOLD index (Global Obstructive Lung Disease) is between 50-80% of what would be predicted for your age, weight and height. So to me, what your doc is telling you is muddling and unhelpful.

Just to give you a personal example, I am at the severe stage, well into it at 36% fev1. I have been on ambulatory oxygen following exacerbations and hospitalisation (when I was on it 24/7) but due to the amount of exercise I do, I have managed to improve my muscle tone enough to not need the oxygen when I am well. Exercise is very important as copd often makes the muscles decondition, but muscles which are kept in good nick will make more efficient use of whatever O2 you still have. People vary wildly across the various stages of copd in what their oxygen needs are.

You clearly need more information. I think it is too easy to say not to worry because you will - I certainly did. I think its inflammatory and frankly stupid for your doc to use a phrase like "hanging by a thread". Are you in the UK? If so, and even if you aren't, please consider calling the BLF helpline on 03000 030 555, armed with your test results (ask for them to be sent to you if you don't have them) and talk through your situation. The nurses on the helpline are friendly and high knowledgeable. And you will get the benefit of their knowledge which may well make you feel more in control.

Take care,

[deedee5 in reply to O2Trees]

Thank you so much. I wish the doc could take more time and explain as you did. I certainly going to check everything out. I have active hypoxemia and dyspnea. MY last PFT was in 2015, doc said I Dont need another until April 2017 which would be a year. YOU ask him questions he writes on my medical report that I am argumentive. You a re right, I do need a lot more info . Stay Well!

[O2Trees in reply to deedee5]

Has anyone suggested you go to pulmonary rehabilitation? It's a course where you are taught a series of exercises, both aerobic and resistance training, plus teaching about how to manage the condition. Very many of us have done the course which is usually about 6 weeks twice a week, 2 hours a session. I've done two courses over the years and now go weekly to what they call a maintenance session, i.e. the same exercises but without the teaching as we are considered taught I would find it hard to cope without this training and it has a strong evidence base for helping patients.

I forgot to say in last reply that I am 70 and have been dxd since 2000, and that was at moderate.

[deedee5 in reply to O2Trees]

HI, The answer is no. I WENT TO A pulmonary doctor who my GP refered me to. He just did themtesting and wasmsuppose to contact my Gp. More than once I had a problem getting results. SO, I Did not go to Pulmonary since thinking my GP could help me and take time to steer mme in the right direction, I was so wrong. The both make me think it is pointless to do so because neither suggested it.

[O2Trees in reply to deedee5]

It's amazing how often GPs and consultants expect us to find out things for ourselves. Several of the people in my session are on oxygen, about 5 out of the usually 15 of us.

Again, ask the BLF helpline about this - you being at a distance and me not being medically qualified, Ive no idea if its right for you but you need to find out.

[deedee5 in reply to O2Trees]

That is what I have been doing. THE Internet is helpful, but it is also time consuming, especially when you are not up to par. BLF will be a great help, I am sure. My doc advises me not to go on internet , I told him that thats the way I find things out. I don't think he took the hint. Thanks again for all your help.

[adapting in reply to O2Trees]

thanks so much, very informative, i did not know unconditioned muscles use more oxygen!

[deedee5]

Thank you Carole. I understand.

[Samjeff]

You have really asked a good question GPs don't really answer questions they seem to just generalise I'd like straight talking instead of his mamby pampy stuff. Sam