In April, our GP surgery put everyone in a specific age bracket through a Lung Health Check. I had a triage appointment, followed by an interview with a specialist nurse and then a CT scan. Three weeks later I had a letter telling me I have, and I quote, "damage caused by smoking called emphysema." l will be reviewed in two years time.
This came completely out of the blue, although I had been told that the fact that I had had a secondary chest infection back in 1997, which resolved very quickly with antibiotics, made me high risk.
I stopped smoking twelve years ago and have none of the symptoms of emphysema listed on the NHS website. My sats are usually 98 or 99% now and I have no shortness of breath or cough.
Despite receiving this letter, I have heard nothing from my GP surgery. Should I? What if anything should they be doing now? I feel rather at sea with all this.
Thanks
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AngelRain
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Hi AngelRain, I can remember my GP telling me that I had over inflated lungs, that suggested emphysema, spirometry confirmed it, that was back in 2013, very daunting at first but it's by no means the end for us, the fact that your sats are so good and that you don't have breathlessness or a cough are all good signs that the disease is in the very early stage.
I couldn't say what action your GP's will take, maybe you should phone them or call in to find out where you go from here, one thing that I do know is that stopping the smoking was a good choice and if you look after your health by eating healthy and get regular exercise it will be years and years before you have any real problems with the copd, best of luck to you..
Hi AngelRaine. If this was me I would be ringing the surgery to get an appointment with the GP who referred you to discuss the findings. I don’t think a letter like that is in anyway satisfactory and you deserve to know how they have arrived at that diagnosis e.g. what exactly the tests showed. What were you spirometry results and what was it that showed on the scan. I don’t think it is right that they drop a bombshell through the letter box with a glib see you next year.
Typical. They give you rather worrying news and leave you to get on with it. You need to see your GP to discuss this properly, though it doesn't look as if you'll have much to worry about at the moment.
Try not to panic too much. I had an incidental finding of emphysema on a heart mri scan 5 years ago and was shocked as I hadn’t smoked for 20 years. I went privately to see a consultant as couldn’t bear the waiting and worrying on the NHS. I had lung function tests and my spirometry was in normal range but gas transfer TLCO was low at 57%. I have been fit and well since then and recently had another lung function test which shows my spirometry is still in normal range and my gas transfer is 70%. I don’t know why this is as it usually declines but I do exercise a lot and think it must help. If you can afford to pay privately I would otherwise get your GP to refer you to an NHS consultant. I think the scans were a good idea but they are leaving people feeling high and dry with worrying news. Good luck!
Hi Gingerboy1960, I found another problem with private medicals many won't see older people as they feel you are the NHS responsibility. But good suggestion you made.
2 years is too late. You've probably got stage one. It won't show yet. But it's a progressive disease, no cure. I can only stress exercise is the key, and above all taking your medication. And you'll learn to live even the worst days. I'm stage 4 and I exercise every day. I'm on oxygen 24/7 i still have a good life, just can't do marathons any more 🤣🤣🤣 trust me exercise is the key. Get as much information as you can from the nhs and this website is a good place to start. You be fine ❤️
I think with most lung disease's they leave you to get on with it which really isnt helpful at all. I would go back to your gp and start asking questions. It sounds like this is in the early stages but you do want more information than the ketter has given you x
As you read here, there is a lot you can do in the meantime whilst waiting to see your GP. Exercise and the type of exercise gives you more control over your lung condition. I’ve just finished a course of pulmonary rehab and feel so much better for this, and it’s now up to me to continue with the exercises. I had to ask the GP for this as our practice is not at all good at signposting.
There are also exercises recommended on the Asthma and Lung AKA British Lung Foundation for you.
Hi Angelrain, I was diagnosed in Dec 2017 after a cancer scare consultant told me i had 3-4 holes in the top of my lungs. that was the last i heard until my GP called me in for a COPD review in 2018 and when I attended they asked what inhaler I was using but I had never been offered one. then I was told I did not have emphysema, I had to point out the consultants letter they had received . they then panicked got me inhalers went through 6 to find the one that worked, then they gave me a management plan for flair ups and rescue meds for the flair ups . they also arranged an annual x-ray and annual review. so what you should get/have in place is a management plan, rescue meds and annual review .after all these years i now have holes top, bottom and back of lungs. i dont cough and the lung function only just shows . i normally only get short of breath when i shower and i cannot do stairs any more(just very very slow). so get on to your GP and get this all in place specially your inhalers can take a while to find the right one. dont forget with emphysema you get free flu jab. good luck in the future. kevin
Thank you everyone. Your replies have been really helpful. I'll try and contact the surgery and see what their plan is. They weren't answering the phones at all yesterday.
Thank you also for saying that I shouldn't have had a potentially life changing diagnosis by letter. I thought that was pretty poor as well.
exactly the same as my husband from our GP practice, Not even a reply from them acknowledging the scan, never mind the results, it was only he seen it on his online medical record, that prompted him to contact his Gp! Is t it supposed to be the other way round!
he panicked and phoned the Ct scan dept and they said your Gp should really be I touch with you regarding result it should not be you chasing it up. But they didn’t.
I have had the same problem myself, they asked me to contact the cardiology dept as my results wernt back when I phoned so they said I should do it! Don’t no how they get away with this behaviour being GPS we rely on them for our care so we no exactly how you feel x
I was born with PCD but had little help from GP and NHS for several years, so found consultant interested by paying to look on line at interests etc of all respiratory consultants in area few years ago. and found Dr Sullivan. I’m getting lot more care than previously, shame I didn’t find her earlier. I’d been with my GP surgery for over 50 years.
Dr Sullivan arranged Nebuliser etc and antibiotics to keep in hand, and now I’m having to take them continuesly. I’d be very happy not to, but they’re keeping me alive. Best wishes, Jean x
that’s so bad, but I’m so glad you found someone who is now giving you the best care and you can trust. Do you still have to pay private to dr Sullivan. We have been with this present Gp for 40 years after we moved home used to be a good practice but the good GPS starting leaving one by one and replacement aren’t as good unfortunately for us, hope you are feeling lots better now jean x
no never had to pay to see Dr Sullivan or her colleagues. Only had to pay to look on line at details. Yes my Gp practice is failing, has been forced into group practice and when Dr Sullivan writes to them has to send to a Dr Ahmed who I’ve never met or spoken to, at an address not my group practice. I know it’s all online, but could cause problems.
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So, I called the Helpline this morning and spoke to a very helpful respiratory nurse. It seems I am not the only person to have received a letter like this. What I need to do is to follow this up with my GP, as others have said, and establish whether this is an incidental finding of emphysema, which may never give me any trouble at all, or whether it is actually a diagnosis. Given my lifestyle and obs, she thinks it will probably be the former, which is a relief, frankly.
Belatedly confirming that the GP I saw felt that this was an incidental finding and no action needed to be taken. In fact he said that they had been approached by so many of these patients who had received these letters that they were going to discuss this in practice meeting with a view to making a complaint.
My hubby didn’t even receive a letter, he saw it in his medical records online, so if he hadn’t access to his records he would never of known and things like this can cause an invalid travel insurance for instance so it’s really not good enough is it, that was same for hubby a finding on the ct scan, you either have it or your don’t so the Gp should either confirm it or say trivial doesn’t need any action and if not stop putting on medical records as causes loads of probs in our opinion, he has asthma and gets checks for that and his score has actually improved
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