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Scared stiff by Dr today

Alauralane profile image
12 Replies

Hello there I am new to this, 7 years ago as an incidental finding a CT showed up early emphysema in the upper lobes of my lungs with no clinical significance, my Dr at the time told me do not worry look after yourself it should never affect you, I smoked when I was young for about 10 years, I also have asthma, a spirometry test 3 years ago confirmed asthma, now I have been constantly a little short of breath and a bit wheezy for a couple of months without much relief from ventolin, though my peak flow goes from 350 to 450 as soon as I take my inhaler so thought it was seasonal allergies, the chest x-ray they did show hyperventilation of my lungs which has scared me and the Dr is repeating the spirometry test in a couple of weeks but said it was probably the COPD getting worse, I am 47 and of course googled COPD and am sitting here in a panic, anyone here been in this position and it was not a worsening of COPD I have congested sinuses and other allergies, exercise like at the gym does not seem to affect me much, just the same constant level of SOB.

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Alauralane profile image
Alauralane
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12 Replies

Hi your doctor was right 7 years ago not to worry too much about it. Copd in the early stages is very manageable and with a healthy lifestyle you have a very good chance of a healthy and happy old age. Most people die with copd rather than from it. I was diagnosed mild too 7 years ago and am still mild. The doctor told me then something else would get me first ie old age. So unless you want to live to 120 don't fret.

Please don't google indiscriminately as Dr Google will kill you off in a few clicks. Stick to recognised sites such as this one and the NHS. There are loads of scare stories on the net but we are the ones who live with it so listen to us.

Having said that it is a chronic condition and you need to make sure you look after your lungs and deal with any problems asap and take your meds. It is progressive and does get a bit worse over time as you age but you are very unlikely to end up at the severe stage. There are many on here who are and they still have quality of life.

I hope this helps somewhat.

Alauralane profile image
Alauralane in reply to

Thank you Lilaclil, I know you are right, it is only the SOB that has caused me to worry, that and the dreaded Google, I was more than happy to accept what I was told originally and have done till now, then this morning the Dr talked about the worsening COPD and the chest x ray showing hyperventilation, guess I shall have wait and see, thank you again.

2greys profile image
2greys

Hi Alauralane, Oh dear, do not ask Doctor Google, it will have you dead and buried in the first two lines! Seriously though worrying will not help you one bit, it will make your breathing worse, worry will also make you ill instead of the COPD or Asthma. Sadly there is no cure yet for COPD, this is true, it is a chronic disease.

There is a lot you can do to slow the progression down of COPD, you seem to be leading the right lifestyle, but in any case ask to be referred to Pulmonary Rehabilitation, this will teach you all about COPD and how to manage it's symptoms, I was a complete mess before I started my PR course and could only walk 35 yards before I had to stop, gasping for breath. 6 months later and with intense exercising I can now walk 5+ miles. I have also managed to improved my lung function a fair bit too.

You should be able to lead a comparatively normal life, even if at a slightly slower pace. I have severe COPD (Emphysema) and still manage to work full time and still have the energy to exercise each night and at the moment (temporarily) a carer for my partner who has had a growth removed from a joint in her dominant hand, so have to do the housework, shopping and the cooking. I am 66 years young and also have several other conditions, all smoking related I might add.

The important list of must do:

No smoking, this includes second hand tobacco smoke, camp fires, barbecues etc...

A healthy balanced diet and maintaining a good healthy BMI.

Avoid people who have coughs and colds, you do not want any chest infections to make your condition worse.

Taking you medications as prescribed and on time.

Then there is the secret weapon "exercise" the more you do, the more you CAN do.

Alauralane profile image
Alauralane in reply to2greys

Thank you 2greys, I will certainly ask for a referral as I have read many positive things about it, your upbeat approach is certainly appriciated, thank you.

timCHP profile image
timCHP

Hi there. You've come to the right place!

First up, have you looked at the BLF info about COPD? It's very clear and helpful: blf.org.uk/support-for-you/...

I have the opposite of COPD - I have a kind of Chronic Pulmonary Fibrosis which is trouble breathing in rather than breathing out - and I'm a similar age to you (I'm 46).

I too got terrified by looking things up on the Internet - perhaps with good reason, my prognosis isn't great.

But it's amazing how you can get used to having an uncertain future. You realise that the future never really happens, it is always *now*. If you see what I mean. The future never really arrives if you just concentrate on the day you are in.

I try and approach things by controlling what I am able to. The body is a complicated machine, and there are lots of small and big things you can do which might help you feel better physically and emotionally. Here's a list of stuff that work for me and should work for anyone with a Chronic illness...

- Get the best doctor. Perhaps you are already seeing a fantastic specialist. But if you are not and are mostly seeing a GP, ask for a referral. The NHS is a fabulous place and has centres of excellent for most conditions. The Brompton in London - for example - has a famous COPD clinic. rbht.nhs.uk/healthprofessio... Ask your GP to refer you there if it's near you. If not there are other places, your GP might do some research. Or use Google!

- Look after your body. Think about diet and exercise. Boring, but true. This is the world's best diet: Eat mostly plants. Not too much. That diet works for everyone and is only 6 words long! Nothing is prohibited, but if you can stick to those basic 6 words as much as you can, you will help your body out. Also, exercise when you can. Walking counts. There may also be a Pulmonary exercise club you can visit. There's more info on the BLF website - blf.org.uk/support-for-you/...

- Try other treatments. I'm about to start acupuncture, I'm trying to practice meditation, and I'm going to see an immune system specialist privately (my disease is caused by my immune system). See if any alternative therapies could give you some relief, reassurance or even relaxation. Even treating yourself to a nice massage every now and again could be good therapy!

- Consider supplements: I take some specific vitamin supplements for my lungs: everyone should have Vitamin D, minimum - Vit B is supposed to clear pollutants from lungs, NAC is an antioxidant good for mucous relief amongst other things. Spend some time on Google, but stick to better sources - newspaper reports are better than specialist "alternative" medicine websites, I steer clear of those. bbc.co.uk/news/science-envi..., webmd.com/lung/copd/feature...

Basically - Take control. Doing some or any of the above can help you feel you are taking charge of your disease, rather than it taking charge of you.

Good luck, I hope you find lots of good advice and support on this forum, it's been really helpful for me

Tim

Alauralane profile image
Alauralane in reply totimCHP

Thank you Tim for your in depth reply, of course you are right we only have the here and now, I am trying to be mindful of this and also that worry helps nothing, I will take on board the advice you have all been generous in giving me, I guess if I can just get the breathlessness under control with meds I will feel much better about it all, thank you again.

mrsmummy profile image
mrsmummy

Hello and welcome to the forum. You have been given some great advice. :)

carotopgal profile image
carotopgal

I'm on this site because my husband has Emphysema. He was diagnosed 17 years ago just like you with mild Emphysema. He went on about his business for the next 15 years not thinking too much about it (he did quit smoking 14 years ago after smoking for 40 years). It has just been within the last year and half that he's gotten worse. So don't panic! He is now on oxygen 24x7, but he still does what he wants, albeit at a slower pace. And I understand about the Googling. I did the same thing and about drove myself crazy! Not a good place to go. :-) Hugs to you!

Alauralane profile image
Alauralane in reply tocarotopgal

Thank you Carotopgal, There should be a health warning on Google, sorry to hear about your husband, thank for the hug😊

lKeith profile image
lKeith

Aluralane,

Hi The last thing you need do is try to do your own diagnosis using the internet, their information will frighten you witless. Discuss only with your doctor or specialist your concerns. When you can no longer do exercises, walk upstairs or walk any distance then start to worry, meanwhile don't panic.

Keith

Alauralane profile image
Alauralane in reply tolKeith

Thank you Keith, exactly what I intend to do, and use this fantastic site, it is a shame Drs do not realise the implications of not explaining things correctly to people it may stop them doing their own research, also why do they take so long?, it all adds to the stress and uncertainty, trying not to panic but breathlessness is a constant reminder all is not well, thank you for your post.

lKeith profile image
lKeith

Alaualane,

Always look on the bright side, what we all suffer from on this site is poor breathing, but we are alive and there are a lot of worse things out there.

Keith

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