Copd

Hi I have just been diagnosed with moderate emphysema whilst having a chest ct for a benign lung nodule. This was such a shock as I have never smoked. My gp says I have to have a lung function test in the next couple of months can't do one at the minute because of covid. I am a symptomatic at the moment but feel really scared has anyone else on here got any advice it would be much appreciated. Thanks

[Katinka46]

Good morning Lesley

I am not surprised that you in shock. You do not mention how old you are but you should be tested for Alph-1-Anti-Tripsin-Deficiency. This can cause emphysema. I mention age because that would usually become apparent in people in their twenties or thirties. Are you seeing a consultant or is it being managed by your GP? A pulmonary function test is in three parts: spirometry, gas exchange, and lung capacity, and would be done in a hospital. GP practices can usually do the spirometry part. You need to push for more clarification. There are other conditions that can look like emphysema.

This is a lovely, friendly, supportive, informative group.

All the best

Kate x

[Hidden in reply to Katinka46]

Morning Kate thank you for you lovely reply I am 65 and I only found out a couple of days ago so I haven't actually done anything yet but read about COPD. As I am a symptomatic the gp said there is no treatment at the minute but to have a lung function test as soon as they are able to do them. I haven't had a cough or cold all year until now but it isn't bad and I haven't been breathless. Gp did say it is possible genetic but I have read that is usually in younger people. So I feel abit lost at the moment.

[Katinka46 in reply to Hidden]

It looks as if the GP was referring to A1ATD, but it should still be tested for.

Have you ever been exposed to anything toxic or hazardous?

Take care

Kate x

[Hidden in reply to Katinka46]

Hi Kate no not that I know of I suppose when I can have the lung function test I will know abit more. It still all feels a bit unreal.

[soulsaver]

I don't follow: How did you/they know you had a benign lung nodule?

[Hidden in reply to soulsaver]

Hi I had a colon CT scan for stomach pains and as they scanned the top of my bowel they spotted what they thought was a lung nodule. So they did a chest ct and they sent me a letter which said it was suggestive of a benign nodule and emphysema in both lungs. I then rang the gp.

[CDPO16]

Hi and welcome.

Your shock is quite understandable, Lesley, given that you have never smoked. Other factors can be involved in developing lung disease, including emphysema, such as prolonged exposure to chemicals and other irritants, as well as a family history.

It must be very frustrating having to wait for lung function tests. My GP practice is not carrying out spirometry tests at the moment but I believe that some hospitals are doing full lung function tests but I don't know specifically which ones. Although, as Kate said, A1ADT is usually the cause of emphysema in younger people, I had a blood test to eliminate that as a cause when I was 61, even though I am an ex smoker. It may be worth asking if your GP would be willing to arrange for you to have that test.

At the moment my best advice would be to get plenty of exercise and eat healthily, and avoid coughs, colds and the like if you possibly can. It would also be an idea to get a flu vaccine. The British Lung Foundation have many information leaflets with good advice if you look at their home page. I hope that you make some progress in getting more information about your diagnosis soon.

Best wishes

Carole

[Hidden in reply to CDPO16]

Hi Carole thank you for replying just been out for a 40min walk with hubby really lovely no breathlessness I have also been on my static bike for 2miles so I am exercising and eating well. May I ask you how long you have been diagnosed and how you felt. I have no family history of lung problems my dad is still going strong at 89 and my mum passed away at 89 complications of a stroke non of my siblings have any lung problems. Thank you once again for replying.

[CDPO16 in reply to Hidden]

I was diagnosed with COPD in January 2014.

I had been slightly breathless for a couple of years before a virus infection resulted in severe breathing difficulties and, having taken a history, my GP, a month after I finished a course of antibiotics and prednisolone, arranged for me to see the practice nurse for a spirometry test which resulted in the diagnosis of COPD. I recall having a chest xray too.

It was later confirmed as emphysema following a CT scan in 2015 arranged by the consultant at my local chest clinic when a variety of inhalers failed to help ease my breathing difficulties. He also arranged for a full lung function test. Some years later I was diagnosed with late onset asthma. As, I said, I am an ex smoker but have been exposed to other irritants during my working life.

Covid has prevented so many routine investigations being done but you are certainly very active and that will stand you in good stead to keep your lungs functioning as well as possible, along with keeping you fit in general as you know.

[Hidden in reply to CDPO16]

Hi Carole thanks for all the advice. I had a flu jab in Feb but will be having another soon. My gp advised me to ring in about a month to see if I can get a lung function test I will ask about the blood test to see if it's genetic. So you have had COPD for over 6yrs do you manage to keep well has your COPD got worse in that time. Thank you for taking the trouble to reply to me because I am feeling so confused.

[CDPO16 in reply to Hidden]

Before I answer, please don't compare yourself to me.

My emphysema has stubbornly not responded well to treatment and I have had many exacerbations since 2016, each doing that bit more damage. I am now in the very severe category and am very much limited in daily living because of severe breathlessness, but my history is not the norm. Many people live for many years with a very slow deterioration of their disease.

Focus on staying fit and well and get what information you feel you need for now without delving too deeply. It's easy to frighten your self silly at this stage.

Do let us know how you go on when you get more tests done. Wishing you well xx

[Hidden in reply to CDPO16]

Thank you so much for taking the time to reply and I am sorry to hear that your condition has worsened. Yes I think you are absolutely right I have scared myself silly. I will let you know how I get on with my future tests. Thank you once again for being so lovely.

[jackdup]

COPD to a degree is an individual disease. Some people are severe and Are working full time while others have significant symptoms and are only barely in the moderate stage. The fact that you have no symptoms to speak of is very good so keep doing what you are doing. Exercise is one of the best things that you can do. When I had an arterial blood gas test the lady told me that some people seem to plateau and stay at the same stage for years while others progress. My doctor also told me it is not uncommon for people to be stable for years. Try to avoid people you have the flu or are otherwise sick as lung infections or pneumonia can cause harm to your lungs that can make your COPD worse but in most causes doesn’t cause permanent damage. Keep doing what you are doing as you could stay symptom free for a long time.

[Hidden in reply to jackdup]

Thank you for reply still feeling quite lost about all this so thank you for taking time to reply to me.

[Ergendl]

I was diagnosed with moderate COPD in 2015, while I was studying a church music degree. My tutors encouraged me to set up a singing for lung health group, which I did. With that, and improving my general fitness and exercise levels, my readings have improved to the lower end of normal.

We are all different, so just work on being the best you that you can be in your circumstances.

[Hidden in reply to Ergendl]

Hi Ergendl thank you for replying it is kind of you to take the time. I am feeling so bewildered at the minute as being a symptomatic it was the last thing I expected. I am exercising and eating well but emotionally its hard. I feel like I have just been left as my emphysema was picked up whilst something else was being checked. If I hadn't rang the gp not sure they would have rung me perhaps they would. You seem to be managing your COPD well which is good. Thank you once again it helps to talk to others with the condition.

[Ergendl in reply to Hidden]

My COPD was only picked up when I went to Tenerife and visited Mount Teide. I felt fine at 3000 metres, but when I took the cable car up to 3500 metres, I was struggling to breathe and felt very unwell. I took the next cable car down, and felt fine again. The cable car had a warning not to use it if you had heart problems, so when I got back home after the holiday, I visited my GP and had my heart checked out. The only thing wrong was a slightly enlarged right ventricle, suggesting lung disease. That led to my diagnosis.

So I was not aware of any symptoms prior to that holiday, either. But my previous husband Bob died of medical problems related to severe COPD, so I was grateful to find out my diagnosis while I still had time to do something about it.

[SJCJ]

Hey Lesley, no spirometry currently being done in GP surgeries due to possible risks from particulates. The gas transfer bit can be done in hospital - so I would push to have it done in your local hospital - there is currently a waiting list due to the backlog from COVID, plus they're only running at 50% capacity due to requiring a deep clean between pts.

Katinka, below, is right - it's worth having the apha-1 antitripsyn blood test - it may be that the emphysema was acquired from passive smoking.

You do not say, either, what your occupation has been.

[Hidden in reply to SJCJ]

Hi sjcj I worked in the civil service for over 30yrs an office job. But I have been retired for nearly 4yrs now. Yes I suppose it could have been from passive smoking although nobody in my immediate family smokes and where I worked people had to go outside to smoke. No family history of any lung disease. But I don't suppose there is any way of knowing what actually caused it if it is not genetic. Thank you for your reply and advice.