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Emphysema

bryan45735 profile image
11 Replies

Hello everyone I'm really sorry to be talking about my situation after everything I've spoke about recently im convinced I have emphysema people say to me why don't you believe the health care professionals, well im trying I have a family history of emphysema my nan had it she was around smokers most of her life, and worked in a laundry environment all her life but she never smoked it was only passive, then my dad got it he was a heavy smoker and carried on despite being told to quit and then there's me I smoked for 31 years and quit 2 years ago lung function as said in Feb 2020 was fev of 93% I was 45 years old at the time ive had chest xrays that are normal and every doctor and nurse I speak to say no emphysema and havant even suggested a ct scan I guess they wouldn't with them results and all I get told is its anxiety I did have an alpha 1 test to see if that was OK and it was fine so how can the doctor ect be so sure I havant got emphysema the only symptoms I have is tention in my chest I hold my breath alot yes I do get out of breath going up hills but I'm constantly thinking of my breathing but my question is how do they no I havant got emphysema just by having a chest xray and a lung function test x

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11 Replies
Jake25 profile image
Jake25

Hi BryanYou must see your GP again because the more anxious you are regarding your breathing the more breathless you will be. You must explain to them that your breathlessness is not going away. Are you breathless at other times? Like walking up stairs. I have COPD and I'm breathless on inclines but OK on the flat sometimes I can do stairs OK and sometimes I can become breathless doing very little. But the anxiousness makes it worse. Please see your GP good luck. 😊

ck101 profile image
ck101

Bryan, I'm going to chip in for the last time :)

Think about this, you have a very normal FEV1, this is the FIRST thing that drops in obstructive disease, its also likely your DLCO is normal although I haven't seen you post this (this is the MAIN value that goes down in Emphysema).

You also have a great tolerance for excercise and are able to function normally from what you have said. If you do have emphysema its not showing on your tests. These tests btw are the Gold standard and very sensitive for detecting COPD. Any healthy person in the world today could be in this position, no one knows whats around the corner.

In any event even if you do have emphysema which you dread so much it seems you will have caught it at its most earliest point, before it even shows on tests! In the medical world that relies on clinical evidence this situation doesn't exist BTW.

Consider this; if you did find a doctor that would give you a diagnosis based on your negative results and you wanted to go on holiday. When filling in the insurance forms you would have to report Emphysema and would likely see a significant loading despite having no measurable disease. This is one small impact of having a label.

As you will see here on these forums most even with stage 4 disease are managing great & living good lives, its nothing to be wound up over especially when the signs aren't there. Practice breathing techniques for relaxation and get your mind into something else. Stay busy.

I also feel those 20 mile walks are a time to overthink, reflect and ponder on your personal situation adding to your stress. Maybe its time to take up 5 a side football instead and / or something that really pushes your breathing boundaries like running.

I really hope this message resonates, as you know I was there where you are now. Things will get better.

C.

Patk1 profile image
Patk1 in reply to ck101

Good advice

Bkin profile image
Bkin

Good Morning Bryan as mentioned in the pm, a CT scan will reveal which lung condition you have. However, if your doctors do not feel you are in need of that its unlikely they will offer you one at least that is usually the case in UK.

If you are living in the US you could request one, but I believe they are very expensive.

Do chat again with your GP or respiratory consultant or nurse regarding your symptoms and fears.

If you are in the UK you could always contact the nurses on BLF helpline before speaking again with your doctors.

blf.org.uk/support-for-you/...

All the best BK

Damon1864 profile image
Damon1864Volunteer

Hello Bryan please try not to worry but I really think you need to see your GP. You are going to make yourself really I'll if you keep getting more worried about this. Please go and see your GP and tell him everything you have told us and about all that's worrying you . Please let us know how you get on and remember be positive. Have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

bryan45735 profile image
bryan45735

I've been speaking to the doctors and nurses for 2 years now probably every week, I've been on a waiting list for cbt for a year all the medical staff have said to me theres not much wrong with you in the respect of lung damage but there is mental issues there which we are trying to sort out but I've said to my doctors that I get tention in my chest I hold my breath alot I have a whezz that comes and goes when I over exsert myself doctor again says he is not concerned I keep thinking these are symptoms of copd but the health care professionals say no so I must be going crazy and it's all in my head 😢 I spoke to a lovely nurse this morning from the blf and surprise surprise she said you wouldn't have emphysema with them results and that you have haunted the progression be happy you have dodged the bullet by the sounds of things I really do understand that a lot of people on this forum are very poorly and are getting on with it but my mental health is a fight on its own and I'm trying to seek as much help as possible sorry for going on

Patk1 profile image
Patk1 in reply to bryan45735

Why ru holding your breath

Bkin profile image
Bkin in reply to bryan45735

I think its been covered before bryan, anxiety can produce the symptoms of shortness of breath, also exercise induced asthma, if your doctor has not already mentioned these ask your doctors about these and hopefully you will already be prescribed treatmen if these are part of your problem.

Check out the Anxiety support groups on HU and also I believe you can cbt online.

you can self refer to IAPTS in your area who can advise you further about cbt courses and you can request a one to one with a therapist.

nhs.uk/service-search/find-...

You may find some helpful information from the above link.

skischool profile image
skischool

Bryan have you got money to waste?approx £600 could be spent in about 30 mins pursuing your fears.Just about anybody in the UK can get a private CT scan and a report on it's findingsfairfield.org.uk/tests/priv...

You would still need a referal from your Gp or a qualified physician for a reputable radiological consultant to do it though.

I think you are a more sensible chap than that,but i also believe that with your present anxiety issues you might still disbelieve what would almost certainly be a favourable result from the scan telling you that you don't have Emphysema or anything serious happening within your lungs.

Good luck with pursuing those anxiety issues and i do hope the Gp can speed things up in your case as you obviously need help whilst this issue is controlling your life.

Best wishes

Ski's and Scruff's

peege profile image
peege

Dear Bryan, I cannot add to anything others have written. I can only suggest you see your gp about the anxiety you have about your health. Tell him/her all you've written above. Spirometry and lung function tests ARE the tools to diagnose COPD end of really.

Your dad had COPD because he smoked his whole life away. Your granny had it possibly because her lungs were damaged from childhood diseases before vaccinations were available, she worked in a very damp environment which isn't good for even healthy lungs - perhaps her husband smoked too? Then she may have been misdiagnosed.

There are loads of breathing exercises on youtube to help strengthen the lungs & diaphragm ie deep diaphragm breathing which are also brilliant at calming the anxiety, than there's pursed lip breathing which I use for walking up hill.

Take care. P

Troilus profile image
Troilus

Hi Bryan,I once had it said to me that there was nothing wrong and that I was overthinking my breathing. ( Meaning I was imagining it.) However, my spirometry results told a different story.

I totally understand that when your breathing isn’t how it used to be, it is something you are almost constantly observing,. This I think is a perfectly natural reaction. If something doesn’t feel right, we want to know why and what to do about it.

I can’t help but feeling you are doing yourself no favours by contacting your doctor about this so frequently. I think, in light of your normal spirometry results, the more you speak to your doctor about this, the more likely they are to put it all down to anxiety.

Have you ever heard of a peak flow meter? You can buy really cheap ones, or splash out a bit more on a one that does peak flow and fev1.

If you take your peak flow, you might find you are reassured that all is well.

On the other hand, if your measurements are low, or have a big variation then this will be something you can discuss with your Dr with maybe, a more constructive outcome.

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