Any ideas please?

wonderful that u are still not smoking - keep it up. You are entitled,to both flu and pneumonia jabs. Fev 35% is not so good- you should,be referred to a respiratory specialist/consultant wh0se job it is to prescribe the right medication. Best of luck tomorrow. Let us know how you get on Ann. Carole.

Nice to hear from you Carole - thanks for replying.

The nurse I am seeing is called a 'consultant respiratory nurse'. She is the one who sorted out the blood tests for alpha trypsin (? think that's what it's called) and who has talked about scans and different inhalers. She really does seem to be on the ball and is head of the respiratory team at local health centre. Did you mean that I should be asking to see a hospital consultant?

You didn't say how you are feeling now. Have you managed to sort out the carers who are coming in?

Take care,

Ann

Hi Ann, -she should provide you with 'Spiriva' - an excellent once daily inhaler, also 'Symcicort' - a twice daily inhaler, your old blue inhaler is then just used as an extra 'top up' if needed (haven't used mine for over 3 months). (note - 'symbicort' is brand name - you may be given same thing but with other brand name, it varies by region).

You should also be given at some stage - a course of anti biotics and steroids to keep in the cupboard at home so that if you suspect you are having an exacerbation you can take them immediately to nip it in the bud.

You will probably be given your flu and pneumonia jabs in Oct / Nov as that is when the annual new batch of flu vaccine comes to the GP's.

You should be referred for pulmonary rehab classes, if not then ask about it.

Those are the basics. She or your GP will no doubt refer you also to your local hospital for x ray or similar and tpo see consultant - this is not to diagnose copd, but to check for and rule out any other conditions etc. It may be some months waiting for that appointment.

Don't despair too much Ann, if you are starting out with fev 35%, you can probably get that up to 45 or 50% within 6 - 12 months as meds take effect and smoke free lungs get clearer.

Good luck - get back to us with results of your meeting with nurse - will be thinking of you , love Vanessa x

Bless you Vanessa for being so positive.

I have read so much on this condition and find myself swinging from the depths of despair up to knowing I can fight it. My nurse said to me that many people with FEV1 34% are in wheelchairs and that really frightened me because I just don't feel that bad - but I wonder if I've just learned to live with my symptoms and hide them as best I can from others. I then feel that if I'm hiding them I'm in denail rather than fighting/managing them.

Thank you for your 'list' of things to discuss with nurse and I shall report back when I've been.

Hope that you are keeping well and that you are still coping with your exercise regime.

Ann x

oops meant denial not denail (whatever that is!)

Hi Ann,

Just seen your post. Whose nurse is a little ray of sunshine then? My FEV1 was down to 22% and has improved to 29% and I have continued to work full-time. Anyone who takes to a wheelchair before they absolutely have to is doing themselves no favours as exercise, exercise and more exercise is the rule if you wish to fight this beggar. Hope it went well today. Keep in touch. and CONGRATULATIONS on still being a smoke free zone. :D

Jacee

xx

Well the good news is that I don't have Alpha 1 - antitrypsin deficiency. The bad news is that I have a very poor immune system.

The nurse checked how I used my inhaler and gave me some pointers on how to take it correctly. She didn't prescribe different ones but has referred me to a consultant who she says may well prescribe other meds. This consultant will do just as you said Vanessa and check me out for other problems.

At the moment there are no pulmonary rehab classes in my area although one is being set up. She didn't think I needed to attend one yet.

I will get jabs in October.

She gave me antibiotics to keep in the house and explained how to recognise the first signs of an exacerbation. She said I'd have a review in a years time.

She seems to be following the 'NICE' template from what I've managed to read on the web.

All in all I am feeling more positive- well at the moment anyway - it's the wee small hours of the morning when I get all maudling - do you find that?

So now I just wait for the appointment with consultant.

I went for a walk today and was fine til I met someone and found it hard to speak to them cos I was breathless. Took my inhaler and it did make a slight difference so maybe I wasn't taking it properly before.

Anyway enough of me. I can't thank you all enough for showing an interest when i know that you are all fighting your own battles.

Ann x

Hi Ann,

Glad you had a positive experience and your nurse does seem to be on the ball. No anti-trypsin deficiency is very good. Hopefully, meeting your consultant will be just as positive. Pulmonary rehab is about keeping all of your muscles strong and ensuring that you don't backslide into being a couch potato - particularly as your breathing gets worse over time. As long as you are doing aerobic type exercises you should be fine.

Yes, I remember early mornings soon after diagnosis as being particularly fraught times - anxiety made it difficult to sleep and of course whilst awake I ended to dwell on negatives. As you become more used to your diagnosis you may find that you become more optimistic, slowly realising that this is not an immediate death sentence (I know more than one of us did not expect to be here a year down the line at point of diagnosis).

As for showing an interest - it's not hard because we ARE all interested. You will find we are quite a tight knit and supportive group who welcome anyone who wants to join us. And while we do all have our own battles to fight I, for one, find it easier knowing that you and the others are out there, that I can tap into their knowledge should I need to, that the experiences that are shared can benefit us all, that someone will listen and respond should I feel the need to have a moan or get something off my chest and that I am not alone with this.

Keep in touch - an keep up the good work re staying smoke free.

Jacee

xx

Hi all - its cats and dogs again. Vanessa you say exercise, exercise - if only. Much as I can do to move from room to room but I'm feeling a little brighter compared to this time last week when I spent the weekend in bed. Going for 'assessment' at the local hospice on Monday so it willl be interesting to see what that brings forth. Luv and best wishes to you all. Carole

Hi Carole,

Glad to hear you are improved since last week and hope that you will have more improvement over the next week or two. Don't even think about trying to exercise for the moment Carole - I should think you need to take it real easy for some time after all you have been through lately! I hope everyone is looking after you properly and that the hospice folk will be of some help when you see them.

I think Jacee is in Greece at the moment, I hope her oxygen arrangements have all gone to plan - I remember last year they let her down and it made things real difficult and exhausting for her.

How are you managing with food - do you have 'meals on wheels' or something - more to the point are you making sure you eat enough each day? it is important to try and keep your strength up even if you don't always have much appetite. Of course I have the opposite problem of not being able to say no - particularly to chocolate - then I usually feel sick and guilty for eating it :oops: .

Oh well, I guess I'd better get to bed now - I've been nodding off in front of the TV all evening yet I bet once I'm in bed I will be wide awake- funny how that always happens!

Take care Carole, and do let us know what's what when you get back from the hospice. I will be thinking of you, especially on Monday when you have your assessment,

Love and hugs Vanessa xx :hug: