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[poppylachat]

Hello my name is Wendy I have just been told I have COPD which was quite a shock as I have never smoked or worked with chemicals I am hoping to find out more about COPD from this forum as I find it all a bit confusing when reading things on the net so if anyone can help

[dyson]

Hi Wendy welcome to the best site every one is very friendly on here and willing to offer help and advice

[Hidden]

Welcome

[poppylachat]

Thank you I am very confused by all that I have read I have been told its early stage and I am helped by the fact I am fit and healthy otherwise my hobby is walking and playing badminton so hope that will help me

[Damon1864 Volunteer]

Hi Wendy welcome to the site. Please don't go on the net unless it is a site like this or the NHS site. Hope you keep posting people on here are really friendly. Take care 😊 xxx Bernadette

[hairaffair]

Hi Wendy I'm pretty new here to everyone seems so uplifting and helpful

[piping]

Welcome Wendy.Is always a shock when you learn that you have a disease....that's something someone else gets...NOT you.Here you will get to meet some lovely and some pretty well informed people.....and the odd joker of course hehehaha.

Anyway am glad you have found a new home to turn to when you are needing some information, but most of all a lot of warmth and love in those moments when you feel the need for a hug and compassion.

Love from Downunder...Peter

[Cywebber]

Have you been checked for Alpha-1 Antitypsn Genetic Disorder or Chronic Granumotous Disease.

Im an Alpha-1 zz. I had to get both genes from both parents I found out when I was 43-year-old.

You could possibly be a carrier a MZ gene which means you got one gene from one parent or your parent was a zz carrier all children will be carriers if by same biological father.

Explained a lot of my. Back history.

[poppylachat in reply to Cywebber]

Hi no I have not been checked for Alpha 1 from what I have read it seems I should have have symptoms when I was younger but I do not know how long I have had it. I would like to know if it is through Alpha 1 though as I have children

[Cywebber in reply to poppylachat]

You can ask your doctor for Alpha-1 genetic testing.

Im not sure if this link will assist you in testing. They once did.

alpha1.org/what-is-alpha1

[poppylachat in reply to Cywebber]

thank you

[katieoxo60]

Welcome Wendy, I am sure you will find lots of freindship, support and help here. I have COPD amongst other things. Look forward to chatting again .

[MidnightCaller]

Hi Wendy

COPD is a group name for a range of lung problems. Like You I have COPD and have never smoked or worked with chemicals.

I have empysema which means aging of the lungs.

I also know loads of people who have it and never smoked and many who smoked and do not have it.

I was 44 when diagnosed with a lung age of 79. Now I am 47 with a lung age of 69.

Tips are to remove any dairy from your diet, alternative Hemp Milk. Make sure you are getting a lot of vitamin A and D.

If you are near a main road with loads of traffic wear a pollution Mask. I get the filter type, a pack of two from Poundland.

I also keep exercising, even when feeling not to.

Keep going and God bless you in your journey.

Also keep positive and give thanks for being you.

Hope the information I shared is helpful

[poppylachat in reply to MidnightCaller]

Thank you I intend to carry on walking and playing badminton. Luckily I do not live near a main road.

[Ian-Todd]

You'll get good support on this site Poppy. Seems pretty stink when you've never smoked. Best of luck.

[Katinka46]

Morning Wendy. One of my pet themes is that sometimes doctors are too quick to make a dx of COPD. Who diagnosed you and how was it done? And it is good advice to push for a test for Alph-1-antotripsin-deficiency. It can be done with a blood test.

This is a brilliant forum. Loads of help, advice, information but above all support.

All the best

K

[poppylachat in reply to Katinka46]

Hi I had persistent cough and trouble clearing my throat said it was reflux at first tablets did not work so was sent for x-ray then I was told I had COPD from that had spirometry test and that came out at 11% nurse said could be also border Asthma, I do not have trouble breathing apart from couple of occasions

[Katinka46 in reply to poppylachat]

Thanks for getting bak to me. Hmmm.... 11%? Did you have a reversibility Spirometry test? That's when you do it twice: once without any bronchodilator and then a dose of ventolin, a wait of about 20 minutes and then a repeat Spirometry. If there is an improvement of 15% in the second test then it is asthma. So 11% would be a bit in that direction. Do you know what was seen on the X-ray? Sorry, I do get into a bit of an interrogator mode. Just passionate about diagnosis of lung diseases.

Having had a rather tricky time of it during the pst seven years.

[poppylachat in reply to Katinka46]

two with the ventalin inbetween the nurse said that normally with Asthma they expect a 12-13% improvement. Not very clear what was seen on x-ray GP just said COPD as I had enlarged lung and I am sure she mentioned emphasima. I was told over the phone just before I was going on a walking weekend with some girl friends she told me half an hour before I went out the door as you can imagine it was quite a shock and I probably did not take it all in. I did go back and see her when I came back and she just said it was early stage and just carry on taking the inhaler I do feel a bit up in the air about it all. was really confused by reading things on the net so have stopped now

[Katinka46 in reply to poppylachat]

I suppose I am bit surprised at the COPD dx because that would be quite unusual in someone who never smoked, didn't work in a toxic environment or have A1ATD. There are those here who are similar though.

[MoyB]

Nice to meet you!

I also have COPD, asthma and bronchiectasis but have never smoked or worked with chemicals.

In my case, gastric reflux seems to be the culprit! I have had a hiatus hernia for years and the consultant thinks I have been having 'silent reflux' at night ie I haven't known about it but it's got into my lungs and caused the damage.

It might be worth asking your GP if this could be an issue for you as there is medication out there that would help if that were the case.

Glad to know you are fit enough to walk and play badminton - exercise is the best thing if you can do it!

xx Moy

[Raptorabz]

Hello Wendy, I would get a second opinion, you could have other problems, like blocked arteries which will not let you blow strongly on the spirometer test. You could have a lung infection, that could also effect you when you are on the spirometer test. The only way you can be positive that you don't have COPD is to have a CT scan of your lungs. That is my case story. It took them 1 year and 4 months to finally find out that I don't have COPD after a CT scan. The found tha I had a blocked artery (LAD - 99% blocked). I kept telling the doctors that none of the inhalers they gave me were working, but they ignored me.

I wish you all the best, go seek to get a CT scan of your lungs.

Warmest Wishes,

Raptorabz

[Katinka46 in reply to Raptorabz]

I sooooo identify with that. If I hadn't pushed for other diagnoses my GP would have settled for COPD way back in the beginning of this. And I knew it wasn't. Sudden onset, resistant to all bronchodilators and steroids, no cough, no mucus, no infections. And yet... I knew there was something(s) serious going on.

[Raptorabz in reply to Katinka46]

Hi Katinka46, , it took the so long to finally figure out what was wrong with me. I lost my breath overnight, not progressively . It was the wrong inhaler which reacted violently on me that landed me in hospital that finally also saved my life, as I had a 99% blockage on the LAD.

Regards,

Raptorabz

[Katinka46 in reply to Raptorabz]

Tricky. Not really to recommended to have the wrong inhaler to show up something so serious.

[poppylachat in reply to Raptorabz]

Hi what symptons did you have? I went with a cough for over 3 months not really lot problem breathing I have only had a chest xray which is why my GP says I have COPD I I have since done the spirometry test and results came out at 11% told I could have cross over Asthma

[Raptorabz in reply to poppylachat]

Hi poppylachat, I got back from Singapore and 4 days later I woke up at 4am struggling to breathe, that was around November 2014. The health centre near me got me to do the spirometer you test and told me I had COPD as I was a smoker a long time ago. No inhaler helped me until one of them, (alclinium bromide) landed me in hospital. That's when, after 15 months , they told me that I was making 100%oxygen on my own lying in bed in the hospital. They then noticed swelling of my ankles and knew that I had heart problems. This led to a few more test and and angioplasty , leading to a 99% blocked lower anterior descending artery, or known as the widow maker. BUT before that they did a CT scan of my lungs and told me that my lungs were clear, no COPD.

Regards,

Raptorabz

[poppylachat in reply to Raptorabz]

There to be so many different symptoms for different people I really do not have trouble breathing just the dam cough. She did say my heart was ok so I can only assume that it is. thanks for your reply

[MidnightCaller in reply to poppylachat]

Same here I don't have problems breathing, just cough and mucus in morning. I swim 50 lengths, in gym twice a week for 2 hour session. And go to my lung class every 2 weeks. In class they say people get different symptoms.

I am grateful I have never smoked, just think how bad it would be if I had.

[Katinka46 in reply to poppylachat]

If you look at my profile it gives a very brief account. It all started with PEs (blood clots in the lungs). My main symptoms are severe breathlessness and chest pain. Both getting worse. It was difficult to get a dx as there was not a lot coming from the tests. Chronic thromboembolic disease was diagnosed in 2014, and that caused damage to the small airways, and I almost certainly have Obliterative Bronchiolitis. A rare disease.

[lKeith]

Hi Wendy,

You will find out a lot of useful information from people on this site who unfortunately have the same problems. Their experiences will fill you in .

Keith

[Hidden]

Hi Wendy. This strikes me as a very lazy diagnosis! You simply don't fit the "usual" profile for COPD. Ok, you might have it, but there are plenty of other lung conditions your GP should exclude. You definitely need a CT scan to establish exactly what your lung problem is. Insist on this, it's important. And if it IS COPD, insist on an A1AT test. I'm a never-smoker too. I have asthma & bronchiectasis, the latter can ONLY be diagnosed by CT.

[poppylachat in reply to Hidden]

Hi Thanks for you reply I am only going by what GP said had shown up on my x-ray and I do not know what 1st stage symptons are supose to be. I also think it could be combination of asthma as I visited a National Trust house last year and when in the library with all the old books had to get out because my chest tightened and could not breath but I was ok once I came out.

[JP1954 in reply to poppylachat]

Well I can only give you info about my husband's diagnosis.

One night breathless, went to A&E. Xray, normal, bloods oxygen normal, ecg normal. Was told to book appt with GP.

He had spirometry done, diagnosed very mild COPD. Paid for CT scan which showed very slight hyperinflation, so diagnosis of COPD correct. My husband was a former smoker ( 18 years ago). Sputum test showed Candida. Which was the reason why the copd was picked up early.

My suggestion would be have CT scan performed, test for Alpha1, and if you are bringing up any mucus have that analysed.

In any event, stay fit, eat well, take vit D in winter and stay away from pollutants and people with colds and also have flu vaccine.

Regards JP

[artlover]

Welcome Wendy, I have'nt been on here long, but find it helpful and interesting and don't feel so alone x