The problem with self-management

[dodgylungrunner]

When you're diagnosed with a form of chronic lung disease one of the first things that you learn pretty quickly is that a lot of the management of the condition is down to you.

In some ways that's quite empowering. Once I got to grips with some of things that I needed to do to help myself like regular exercise, drinking plenty of fluids, getting the flu jab and the 'huff-huff' breathing technique to help shift the troublesome mucus, I felt like a regained a sense of control that I felt I'd lost when I was first diagnosed.

However in other ways it's been really scary and unsettling. Me and me alone has to make the call on when a slight cold might actually require a move to a two week course of antibiotics. After my recent pneumothorax it's been deciding when to go back to the gym and how hard to push myself. More importantly, it's been weighing up whether slight discomfort, burning and breathlessness are a sign of another small, underlying pneumothorax or whether, in fact, they are simply just unwanted general side-effects of my lung condition.

It's a genuine dilemma that plagues me every time I get ill or feel a bit of chest pain and there doesn't appear to be an obvious litmus test and follow up course of action as there is, say, with something like diabetes.

As a result I found myself stuck in a general state of limbo wondering whether I should wait a while longer for the cold and/or burning/inflammation in the chest to subside or take a more proactive course of action like starting antibiotics or speaking to the clinical nurse specialist about possibly coming in for an X-ray which may end up being nothing.

Following the old adage 'it's better safe than sorry' is the most obvious course of action. However, it's not as easy as that. I can't just start antibiotics every time I have a cold as in time that will lower their effectiveness when I really need them. Similarly, I can't have an X-ray every time I have a bit of chest pain as that's really bad for my body, too, which has already received more than it's fair share of exposure to radiation.

This brings me to the point of this post which is at what point do you make the call to take action? I imagine this is a dilemma that many others face on a regular basis and I'd really appreciate any advice that anyone might have.

One avenue that I know is open and I haven't tried yet is the BLF Helpline. I know that they have trained nurses who might be able to help and will certainly be able to give me some kind of guidance.

Ultimately, it's a judgement call as with so many things in life not just lung disease but it would be nice to have a few more answers if only for my own peace of mind!

[Hidden]

Hello Dodgylungrunner

Thank you for raising that interesting topic.

Yes checking with the helpline, your GP if in doubt is a good point.

I used to doubt at the beginning now I don’t, I am more proactive..put it down to intuition and experience 😃

I know my own body and its reactions, I can distinguish between a flare-up which I will manage by increasing my inhalers, and/or my daily steroids, and a chest infection with a heavy chest and difficulty to breathe.

Should I ever have a temperature and chest pains I go straight to A&E. I have a degenerative lung disease and I am 66. So I also know my limits.

Wishing you well x

[dodgylungrunner British Lung Foundation in reply to Hidden]

Thanks for replying so quickly Happylondon!

I'll definitely give the Helpline a call but I'm always a little reluctant to go to my GP surgery which hasn't been particularly helpful or understanding of my condition on the times I've been before. When I had the pneumothorax the GP wasn't even going to check my breathing until I asked him and was keen to put the chest pains down to muscle pain despite knowing my history. I've also really struggled to get antibiotics prescribed at times even though I know that I've got a chest infection.

I think I am getting a bit better about knowing when something is seriously wrong and as you say experience and intuition come in to play there. It sounds like you are well attuned to how your body is feeling. I'm on a base line antibiotic to give me a bit of extra protection which certainly seems to have helped a lot though I don't think I'd be allowed to up my steroids at any point as my treatment team are keen to keep me at a low dose.

Hope you're well and thanks again for the advice.

[Hidden in reply to dodgylungrunner]

You are welcome 😊

Yes I remember when you had the pneumo and went to the Brompton. Poor you..very painful.

The muscle pain is a common mistake. I have had to struggle with incompetence in the past..

Sounds like your GP isn’t skilled in respiratory problems. I would definitely change surgery. With your history you need local medical support and that is a competent GP.

Well I am 66.. let’s say I have had time to get accustomed 😃

Are you on azithromycin?

No, don’t go into a higher dose of steroids if you don’t have to. I fluctuate between 7.5mg and 20mg. The ideal would be going down to 5mg but I haven’t managed it yet.

I have side effects like losing my eyesight..I am trying to taper down but it is hard..I started them end of August. I am not on antibiotics, actually I have only had them once this winter, last week and I am glad. And that was for a leg injury.

Between my 4 inhalers, the steroids and eventually my nebuliser I am coping well.

How about the Brompton? Can’t they help you with your action plan etc?

Take good care of yourself x

Fran

[Dubba61 in reply to Hidden]

Morning Fran, I,m almost 62. And have Osteopenia and at present a sore Foot as my neighbour ran over it in her Car. I,m sorry your sight is none to good. My old Mum used to say: old age doesn't come on its own. Now! I no what she meant. 😊😉

[Hidden in reply to Dubba61]

Oh dear how awful!! It must be so painful!!

This early cataract is because of steroids. Things will improve with the operation I hope.

Thank you so much xx

[Dubba61 in reply to Hidden]

I'm sure it will. Cataract ops are very successful. I've heard. Foots isn't broken luckily and is improving each day. Thankyou

[Hidden in reply to Dubba61]

Oh that’s lucky 😊

Thank you x

[Dubba61 in reply to Hidden]

Interesting topic dodgy. I've been diagnosed for 12years now. And basically learned to work on instinct. If a Cold turns to green Mucus (sorry) and Chest pain. I ring Docs who send me antibiotics and Steroids. Without seeing me. They realise i would not ask if i didn't really need them. As i only visit Surgery about once a year for breathing check up. It makes me very cautious, always washing my hands or if out use the antiseptic gel. And try to stay clear of anyone who is ill. S,ll you can do really.

[knitter]

Hi, I am like Happylondon I guess but only after years of experience of living with a lung condition and getting to know when my symptoms worsen and what to do....and I am only 5 minutes away from my A and E or my health centre, which is a reassurance.

Have you a written self management plan at all which gives you step by step instructions....some on this site have a matron who they can ring for advice too.

The BLF have leaflets on COPD and other breathing conditions....I notice their self management one will be available soon.

I feel the same about having so many chest X-rays...especially when I know it's a ' normal' asthma attack for me. I have been known to refuse one on occasions ...with mixed reactions from the staff I must admit.

Have you got an oximeter to measure your oxygen saturation levels? I have a peak flow meter too as I have asthma as well as COPD.

The BLF helpline can offer you advice on what to do ...you can ask them before you get into a worrying situation.

Have you been on a pulmonary rehabilitation course?

[dodgylungrunner British Lung Foundation in reply to knitter]

Hi Knitter, it's good to hear that you're close to your A&E and health centre which is definitely a reassurance. Funnily enough I'm also not far from mine either which has already come in handy. I've not written a self-management plan but that sounds useful and I'll certainly look to get hold of the BLF's self-management plan when it's available.

I don't have an oximeter to measure my oxygen levels as thankfully I am still 'high functioning' and the form of ILD I have at the moment hasn't progressed to the point where that's necessary. I have started pulmonary rehab which has been really useful in giving me some tips on what to do exercise wise at the gym especially in getting back up to speed after the pneumothorax.

I'll definitely look to give the Helpline a call - I've been meaning to do that for a while.

Hope you're well at the moment and wish you all the very best going forwards.

[dodgylungrunner British Lung Foundation]

I know the feeling! It's such a tough call to make and I definitely still struggle with it. I think if the phlegm is green then it's probably worth getting in touch with your doctor but I find that they aren't always particularly helpful and are sometimes reluctant to prescribe antibiotics despite my condition. Hope you're feeling better now though - what type of lung condition do you have?

[2greys]

A rather poignant post. This may help:

blf.org.uk/support-for-you/...

If none of the above helps then seek advice from your doctor/nurse. Eventually you will learn just when and which of your emergency meds to start taking. It is another thing that healthy people don't take into consideration of just what we go through each day, with an invisible disease (you get used to that too).

As far as radiation exposure worries, you only get them for your own good, because you will benefit from them. In a 12 month period last year I had 12 exposures. Since Christmas I have had 3 and so pleased that I had them and I think there may well a few more follow-up ones to come before the year is out.

[dodgylungrunner British Lung Foundation in reply to 2greys]

Thanks so much for the link which to the BLF article which is really useful.

I don't have a formal plan in place to deal with flare ups which haven't really been discussed with me in any real great detail in as many words. I think I'm on the right side of things at the moment based on the article but I'm already on daily steroids and a baseline antibiotic as part of my treatment for my lung disease.

I know what you mean about the exposures. I guess I'm just a little more weary as I've already had a lot of additional exposure to radiation during my treatment and transplant for leukaemia when I was younger. That included total body radiotherapy which is now pretty much outlawed. This year I've had 3 CT scans and 8 X-rays already with my pneumothorax so keen to avoid more if possible.

Wishing you all the best going forwards with all your treatment - so glad that I've found this forum!

[hypercat54]

Hi I am only mild so aren't really faced with this yet. I do know however when I have a chest infection or only an exabertion and don't hesitate to take ab's and/or steroids if I need to. x

[Wint]

But if you've been diagnosed with COPD/Emphysema shouldn't you always have an "emergency" supply of antibiotics and prednisolone at home? I assumed that was standard practice. My GP recommends that.

[dodgylungrunner British Lung Foundation in reply to Wint]

I think it varies enormously to be honest Wint and is obviously dependent upon what type of lung condition you have. I'm on daily prednisolone as part of the treatment of my ILD (I have a rare type called PPFE) and I also have to have a daily baseline antibiotic in doxycycline to give me some added protection to my suppressed immune system.

That was all prescribed by my consultant and treatment team and my GP has had very little to do with things although they do have them on repeat for me which is handy. I had to fight hard to get an 'emergency' antibiotic supply on repeat despite my history and condition and had to get my consultant involved to enable it. Even then the GP has proved difficult on occasion.

It might be very different with COPD/Emphysema of course but it wouldn't surprise me if there is some confusion/difference in approach in practice. In my experience the consultant and/or CNS have been far more helpful than my GP.

[Wint]

It's possible I suppose that only if you have a number of exacerbations will they make sure you have a supply, and maybe it also depends on your numbers. But my GP and nurse gave me a self-management plan which includes antiobiotics and prednisolone at home. I do think it's easy to forget the "General" in GP. Their knowledge is much less than a consultant's. Mine had never heard of endobronchial valves when I mentioned them. And my consultant prescribed different inhalers which he had never heard of. He was happy to prescribe them and happy to refer me for valves, but just didn't know about them.

[peege]

Hi, it's useful to have a proper digital thermometer in your proactive health tool box. A fever is a good sign that your cough, cold or other virus has become an infection & you'll need to begin abs ASAP. Having a decent GP on your case is a good idea. You don't have to see your own GP, find one in the practice who's decent and always see him/her. One thing worth noting about going to the practice is that everything will be on your records where it needs to be for any future reference &/or action.

It a huge learning curve, one we're ill prepared for if you've been fit & we'll all your life & not smoked. I have late diagnosed asthma & small airways disease.

[katieoxo60]

Hi there, your post sums it up in a nut shell. I have a Gp practice that will get staff or doctors to ring back , but its mainly only large practices that can do that. Practice nurse can often be seen quickly if in doubt, walk in centers if you can get there and have time to wait. Ask on a forum like this but that is not the ideal solution or Dr google.As a self manager of my condition, I wish there were clinics like the ones they have for mothers & babies, so we could get advice or referral if necessary. This could really help in the cases of long term illnesses and their management. I appreciate what you say about Being fobbed off when you know something is wrong or feeling that way due to clinical approach. Doctors and nurses do need to listen to your concerns and address them that is part of giving medical care. Hope your contact with BLF helpline turns out well, they are very good.

[Keep-positive]

Hi dodgylungrunner

I strongly feel patients should get given a contact number ( say a respiratory nurse ) that you can contact if you had any concerns like you are at the moment. When you look at the wonderful service provided by the Macmillan nurses for people suffering from cancer I think there should be similar help provided for people with lung disease, but patient seem to have to get on with it alone.

I would definitely go to my GP if I was you and not suffer on your own.

You take care !

[gazman]

You sound like me, when I get a common cold, it is like pneumonia. One day I told my GP that and he told me to come in. I did and he took a swab from my mouth and sent it off. A couple days later I saw him and he asked me if I wanted to go to the hospital or have Silver Chain visit me. I said Silver and for 3 days they came gave me a shot. Magic, after the third shot, I had no cold symptems. Good for a whole year.

Well this year just a few weeks ago I had the same problem. I knew it wasn't a cold so I went to the clinic but not GP was not in. I saw another one and he said, I had an upper respatory infection. He gave me antibotics. 6 days later, it was no better and I saw my

GP, he gave another lot of antibiotics. A little stronger and they worked fine. I don't know if it is the result of copd or not but it has always occured for the last 10 years or so. I was diagonosed with copd about 4 years ago. Mild Maybe it gets worse with age. 75 years.

[gingermusic]

I was told that in regards to the emergency pack of steroids and antibiotic take if and when the phlegm I am coughing up changes to green which then signals an infection. Hope that helps

[Hidden]

Hi I would just like to say you seem to know your own body and seem to be ticking all the boxes but a little reasurrance helps and in turn makes you realise there are so many others out there all thinking just like you .. I have a progressive rare lung disease called lam (for short) as the medical name is far too long ..as far as we know there is only myself and fran (happy london) on here with the condition ..I was on all kinds of tablets in turn causing all kinds of further problems such as heartrate 130bpm at rest ,swollen legs ,hot cold flushes,infection after infection ,iam on 24/7 oxygen 2 litres per min but decided to cut out almost all my meds except my inhalers and lorazepam and since then my heart rate is roughly 100bpm my oxygen has been turned to 1litre per min and no more swollen legs or hot/cold flushes and believe me this time last year I was given 2hours to live with type 2respiratory failure at 42 years old ... So my advice is go with your instincts only you know your body and what feels right...😊😲 take care mel🙋