Well I have just been for my 1 year annual copd review with the practice nurse at my GP.
It comes as no surprise that my FEV1 has dropped even more, I have bronchiolitis obliterans, and bronchiectasis and now I am at severe COPD stage. But as I still manage to do most things ( albeit slowly) I cant complain.
But what has confused me is that she said I should not be taking Spiloto Respimat and Relvar together, she muttered something about LAMS... so she has prescribed me Trelogy??? to be taken instead of the other two once a day.
Now bearing in mind my ice is very thin, I can loose much more lung function as then I wont be posting much on this forum, unless a weija board is in operation. I don't know what on earth to do.
I don't have a respiratory consultant, BUT he discharged me over a year ago, with the blyth comment that as what I had was not curable, only manageable, it would save me going to the hospital to sit around for hours.
So here I am feeling so undersupported - and not on earth sure of where I go from here. I did nowever, say to the lung nurse, if I don't feel that the new regime is working, I am going to be back with a vengeance. But that's easier said than done when it comes to getting an appointment at my GP.
So there you are dear dodgy lung buddies, once confused soul reaching out
Written by
ledge
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Hi I think what your consultant said was very unprofessional, no matter what you still have a right to medical care. I would honestly be asking my GP to be refered to another consultant. Please try to stay active and positive and let us know how you get on. Have a lovely day and take care of yourself 😊 Bernadette xx
That's terrible. I would ring pals at the hospital to see they can help also see your gp on an emergency appointment. Or you could ask the respiratory nurse to come to your home .hope things get sorted
OMG ledge no wonder you feel unsupported, you are unsupported. This consultant has ingnored the fact he has a duty of care towards you.
If it were me I wouldn’t want to see this person again in any event and would check out online a respiratory consultant who has a special interest in bronchiectasis (they should also have expertise in copd and bo), usually in a hospital within a large city. If you have a problem finding one, please don’t hesitate in asking someone to help you on here. You will find your friends on here will help if they can. Most of the chronic lung conditions we have on here are not cureable but quality of life can be greatly improved by management by both clinicians and ourselves.
LAM is short for Lymphangioleiomyomatosis but I can’t pretend to understand your nurses reasoning. I wouldn’t worry too much about it but would definitely concentrate on finding a proactive consultant and getting your GP to refer you. Surprised your GP hasn’t referred you - a year is a long time and you have 3 condition which require specialist care.
Please let us know how you get on. Don’t forget if you have problems, don’t hesitiate to ask on here - someone will be available to help.
There are LAMA and LABA inhalers,sometimes combined into a triple inhaler but in any case with the complexities of your conditions you should be under the care of a consultant full time so as others have suggested seek out another consultant who will keep you under their wing and manage then accordingly.
Lovely chart... Yes, I think she was referring to the enhalers too, which is why I am confused. I was breezing along with my two then after today its all stop. Don't take them, take the new one .. But yes, my new years resolution is to indeed, find a consultant, who will manage my condition a bit more proactively than I currently have. Which reading between the lines wouldn't be hard to do.
Keep hold of your old inhalers and if the new inhaler either doesn't help your symptoms or you get side effects then at least you can return to them whilst you wait to see a new consultant who will be better placed to determine the best for you.i am afraid i have little faith in respiratory nurses these days and feel that they all repeat the same mantras regardless of individual needs.rant over take care my dear. x
I will hang on to the old ones like a Scotsman hanging on to his last five pound note... ( no offence intended to our north of the border brethren) - like you my faith is not all it could be. But then bearing in mind my support system. Its a straw for the drowning lung buddy x
Well what a rude doctor. Just to discharge you like that. 😡 I definitely think you need to be under a specialist. Even if you don't see them terribly often. I'm sorry I can't help with the inhalers but I think Skis has pointed you in the right direction. I think you need a second opinion about the inhalers. Please don't feel too discouraged.
Thanks Cas at the time, I wasn't too fussed, because to a degree I could see the point, he said in his farewell letter sent to the gp that I can always be referred. But at the time I thought no I will go and see a bronch consultant should the need arise - well I think the time is arising, I will ask for a referral to see a specialist in the new year. Hope you well
Hi Ledge, my practice is pretty much the same. I wont see the nurse because she doesnt know anything about bronchiectasis and just treats it as asthma trying to get me to use a blue and brown inhaler which are no good for my condition. In fact my doctor is pretty much the same. Like you I keep promising myself I will get a referal to a specialist in the new year, when I get over this op. Its terrible that they have taken you off something that works and left you with no support. If you cant get an appointment with your gp, go for a telephone consultation, they nearly always ask you to come in so they can check you. I am afraid that we have to be proactive in looking after ourselves in todays society, so please dont leave it give them a push. Hope you get sorted soon. Irene x
Yes, I agree that we have to help ourselves. I think the time is due for me to go to the gp and ask to see a bronch consultant. hopefully somewhere up in London. even though that means a trek.
I'm not surprised you're confused, when nothing is properly explained and your consultant has the bedside manner of a hippopotamus!
There is nothing essentially wrong with your current treatment regime, unless the side effects are too great or it's not working. A combination of Spiloto and Relvar sounds like a classic treatment for your condition because, until recently, only dual-acting inhalers were available. Now that triple acting inhalers are on the market, Trelogy may be an option, but it's not obligatory. Also, as others have said, you should still be under medical supervision, particularly if you change your treatment regime in case it doesn't work. A nurse cannot prescribe anything, so a doctor would have been involved in your change of inhaler, and should be monitoring the outcome.
Hope that's some help. In the end, it should be your decision how to progress with treatment, on the ADVICE of medical professionals.
That’s dreadful . Suggest you contact blf helpline I’m sure they will help. Otherwise a lot of hospices now you can self refer and they’re brilliant . We know it can only be managed but a little compassion goes a long way . Good luck
Keep reaching out we are listening, I haven't seen a lung consultant since 2011. Its managed by myself and GP practice so its not unusual to be left High & dry so to speak especially with long term chronic illness. And even GPs agree that they are not able to meet patients expectations many are struggling to meet the basic criteria needed. You are not alone I have a big GP practice in my area but many appointments come down to a phone call if lucky, except in emergency. Its become sunny & a blue sky here so guess we will just have to accept some things do change but not always for the best. Keep warm and take care x
Don't accept what they say, everyone is entitled to good primary care. I think I am right in saying most of us are half full glass people and we want to live as good a life as possible. Please go back and ask for another referral to someone who wants to help you.
I remember back when I was first diagnosed with COPD I was given a booklet and told to read it. It was all about palliative care. When I was asked on my next visit if I had read it I said NO I want to live with the problem, not how to die with it.
Good luck show them you are part of the treatment plan. Merry Christmas to you and anyone who reads it.
I very much agree with your thoughts that I want to live with this problem, not how to die with it. I know wont go on forever, as life in its essence is terminal. But being left high and dry is not really a solution
I'm a bronchiectasis and bronchiolitis obliterans person too.
My three inhalers are ventolin, fostair and spiriva respimat. I take azythromicin 3 days a week too.
This has worked quite well for me for a while. However my rescue pack was ciprofloxacin but I reacted with nettle rash when I took it. I saw a gp who prescribed a one off pack of doxycyclin. She contacted my consultant to ask about changing my rescue pack. Despite her letter and my following phone calls we had no joy from him. She kindly prescribed 1 more pack of doxy for me to keep as a rescue until I see the consultant next year.
Like you I'm planning on trying for a new consultant in the new year. Not just because of this latest issue but ...
The lady who does the lung function tests recognised the ob from my ct scan. The consultant didn't, he checked with Royal Brompton. Well it's not a common disease. So although surprised I accepted that.
When I expressed how difficult stairs are he replied, wait for this expert advice "Take it easy on the stairs". As I mean the 14 stairs in my house and not the intention to run up the 199 steps to Whitby Abbey as I did when I was fit I wasn't impressed.
My lung function result were, luckily, quite steady over the last 18 months. His brilliant comment "We won't see any changes now." Well at 67 with two chronic lung diseases I'm petty certain that was a daft thing to say. I would have thought " How good is that? Well keep up with your medication, diet, exercise and everything you are doing. That's the best result we could hope for." Whilst not worried that I will die tomorrow I'm well aware that my lungs are in a bad way, that I'm old enough to not heal as quickly as a young person, in some cases now I won't heal at all.
Oh dear! I sound like a moaning minnie. However I feel I should be able to trust the consultant looking after me.
Its utterly baffling isn't it? On the grand scale of things our two things alone are indicative of poor lung function - so you think that a gentle overseeing by a consultant would amount to a little more than keep doing what you are doing... What happens when you keep doing what you are doing, and the downhill slope is in sight? Do you embrace the downhill cresta run of life, hoping of a companion of a consultant on your decent. Or, cling on by the fingernails to the barriers until all strength gives way and you tumble into a riotous decent.
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take care my dear. x
Confusion
CT SCAN - more bad news
Help with confusing PFT results 
Trouble with inhalers 
A update on treatment/ and more.
