have i got what they say

hi all

just need to put this out there first thing is i know none of you are doctors and are not here to say yes you have or no you have not but just would like to know what you think

i was diagnosed with Severe emphysema back in 2017 and was put on onygen when out walking

the symptome of this are

frequent lung infections

/ not had one for a year or more now

a lot of mucus

/ none

wheezing

/ no

reduced appetite and weight loss

/no if i had to say eat more and have put a bit of weight on

fatigue

/ no

blue-tinged lips or fingernail beds, or cyanosis, due to a lack of oxygen

/no

anxiety and depression

/no

sleep problems

/no

morning headaches due to a lack of oxygen, when breathing at night is difficult/no

so as you can see i have answer the symptom for you so have i got what they

just asking for your opinion

[2greys]

In short YES.

Add very severe Emphysema (FEV1 of 28 %.)

Add still working full- time (today I did 10 hours straight through)

Add Lung Cancer (in remission)

Take away the o2.

Keep the rest the same and that is me, at 69 years.

[Hidden in reply to 2greys]

so how can we have it then if we not got them symptome

[2greys in reply to Hidden]

Not everybody gets all the symptoms. For one, excess mucus along with frequent infections is a symptom of Chronic Bronchitis which we do not have. Anxiety and depression are a state of mind (caused by having COPD and its symptoms). The headaches are usually caused by co2 retention and not all are retainers. Fatigue, are you taking vitamin D3 and eating oily fish as well?

I do get the symptom of being breathless. I am constantly using pursed lip breathing, even in my sleep, so I am told by my partner because I blow on her face, it is now second nature. Some of us can cope with the breathlessness quite well and get used to it. I have actually forgotten what it is like to breath normally, after only 3 1/2 years of being like this.

[Hidden in reply to 2greys]

so we now ask why have symptoms then if most of us dont get them you are now the 2nd person to say this lol

[2greys in reply to Hidden]

Because Emphysema and Chronic Bronchitis are two separate diseases but because they both cause obstruction to the airways they are placed under the umbrella term called COPD, although the medication to treat both is the same.

There are many causes of COPD, not just smoking. Inhaling anything other than clean fresh can cause damage to the lungs as do chest infections of any sort, even Rheumatoid Arthritis can damage the lungs. Not all damage results in COPD though, there many other types of Lung Disease, the one thing they all have in common is that any damage caused is permanent with no cure.

[Caspiana]

Hello Hidden ,

I see your FEV 1 is somewhere in the low 30s and this,was two years ago? This leaves you in the very severe category. I agree with 2greys not everyone gets all the classic symptoms. Lung diseases are quite hard to diagnose especially initially. Most of us go through x-ray after x-ray, CT scans, blood oxygen blood tests to determine how much oxygen is in our blood, and lung function tests. Did you undergo these?

I thought I was just a bit "tired" when I experienced shortness of breath five years ago when I went to the doctor. When he ordered a lung function test I was , as was he, rather flabbergasted to realize I was already in the the severe stage of lung disease. I had somehow managed to adapt to my low lung function and carry on as if nothing was wrong. I worked full time, commuting four hours a day and teaching twenty five classes a week. So you see everyone is different. One person with a lung function of 30% may struggle to even get out of bed, whilst another is still commuting to work by train everyday. Same numbers, but very, very different outcome depending on the person. I hope I am making sense and not just waffling away.

Whether or not you have emphysema, one thing is clear, you do have severe lung disease. However! That doesn't mean you can't keep up your exercise regime, as I read in your last post you do exercise. And according to this post you are fairly comfortable without deliberating symptoms. So actually I am happy for you. Take good care of yourself.

Best wishes,

Cas xx🍁🍃🍂🍀

[Hidden in reply to Caspiana]

CT scans, blood oxygen blood tests to determine how much oxygen is in our blood, and lung function tests. Did you undergo these?yes i had all these am happy you can still work as work cos i use oxygen and there nowhere they let me wear that and work

[Caspiana in reply to Hidden]

I stopped work actually eventually and just had a transplant. So, not there yet. 😃

[gingermusic]

I have suffered from Emphysema for 30 years now. Flare ups happen depending on how well you take care of yourself. I have not produced an excess of mucus unless I have had a chest infection. Sounds as if you are managing the problem very well and should be extremely grateful, and enjoy your life.

[stamford1234]

Hi Tiger, I don't have all of those symptoms all off the time. Sometimes, some of them some of the time. I do get very breathless, frighteningly so sometimes. It is often said on here that we are all different and different days are different too. Very hard to plan anything. Did you have spirometry? You don't say what your FEV1 was. I see 2greys has replied to you. He has hit the nail on the head! Remember it is a progressive disease the best we can do is slow the progression through exercise, diet, medication (some take supplements) and a positive attitude. I wish I had been diagnosed sooner. My FEV1 on diagnosis was 29% it is now 34% I am due another spirometry soon, I hope it has gone up a bit more but I am not holding my breath! Look after yourself even though you don't display all of the symptoms all of the time

[Hidden]

you see now stamford1234 do we not belave what we read now as they are the symptoms that is told you you if you ask google what you may have then i have read lots on here from people with same or like me saying thing like what you have just said I am due another spirometry soon, i have also read on here from other that they have seen there doc may times i have said in the past on here about not seeing any one or getting my fev1 told me or even if am going up or down with it all but then i had some one have a go had me for asking about it and some time i feel that when i ask about thing on here wich i though was a site to help people talk about thee symptoms i get the feeling that it a game of am more pooly than you on here and also get the feeling of i have this and do this so just get on with your lifw as you not as bad as me