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New and suspected emphysema and confused.

denominator profile image
18 Replies

Firstly I'd like to say hello to everybody here.

Okay now that part is done where can I start? Well I can give a few unintrusive details like my age and sex which are 35 and male. So let me begin... about a month or so ago I was at my PC and for now real reason felt slightly uncomfortable and felt the need to lay down on my bed, I did so and on turning to my right hand side suddenly felt the need to clear my throat so I tried but I felt the need to do it again and this time tasted what seemed to be a blood like taste.

I decided to clear my throat again (not violently clearing) and spit it out in the bin and to my horror noticed it was not sputum but was blood and when I say I was worried believe me I was seriously worried.

I went downstairs and spoke to my parents (yes I live at home with my family still) when I say I spoke to my parents what I mean is I said something along the lines of "something is wrong with me" then spat in the bin and my parents were also horrified so off to the hospital and A&E I went.

Well I actually felt fine even in the hospital and had a few tests done and was asked on several occasions if I was a heavy smoker to which I just laughed and answered no unless five a day is considered heavy smoking. But from the tests and how slow my blood and how little oxygen was in my blood at the time well it appeared I was a heavy smoker.

Any way I spent around a week in the hospital and had a C.T scan and an x-ray and various blood tests done. But I refused the bronchoscopy at the time because I suffer panic attacks also and the lung specialist understood this and said I would be able to just give sputum samples instead.

I came out of the hospital and didn't think any more of it, two weeks ago just before I was about to go on my holiday I had to go see the specialist and I had another x-ray which was blurred so didn't really show much BUT the C.T scan that I had done whilst in the hospital showed something, I can't exactly remember where it was because it was a bit of a shock to me but it looked like some kind of excess "material" in an area that it shouldn't be.

The one side was nice and round but the other side had the excess "material". The specialist told me he suspected emphysema and I didn't eally know what it was but just said "okay" and thought nothing more of it. He told me to quit smoking so I did just like that because I don't have an addiction to smoking and can take it or leave it quite easily. He asked how I was feeling and I was honest and told him I thought I had cold and he asked how did I know it was cold and I said because I can taste it the sweet taste that you get from it so he said okay and then I left for my holidays.

Two days later and I notice I was clearing my throat not coughing at all just clearing my throat. I was bringing up sticky mucus/sputum and started to notice other slight issues such as I feel chest pains in my left side of my chest which I wrongly assumed was just trapped wind which is something else I have always suffered with. I noticed lower back pain in both sides as well as a pain when I wake up in my left side just above my groin area.

I don't really get that breathless, well I did whilst on holiday but I guess sitting behind my PC for the past three years would make me lazy and unfit anyway. I should point out that when I was eventually walking around then I found people to be far to slow and I had to walk past them to get where I was going, I run upstairs still and don't walk up them and still don't get breathless. Lack of appetite I have had for years which started back when I first had panic attacks. I have always had insomnia as well so it makes for identifying what is wrong with me a little harder.

I'm not on any medication yet and no oxygen either but I'm starting to worry because of the symptoms that I do have. I have looked on the internet at what might be wrong with me but it just gets scarier and scarier. I'm still hoping for GERD or something like that but I'm pretty sure that the specialist was right in his assumption.

I have to many questions to ask even though I have not been diagnosed for definite with emphysema. I'm sorry for the extremely long blog but there is nobody else I can really talk to about this, my family just seem to ignore me about it and are sure that it's not emphysema but I beg to differ and it's my body and life and it just continues to depress me even more and yes I already suffered depression before this.

Well for now this is my story and I have had more blood tests (waiting to see how my body defends against viruses and stuff as well as tests for other things?) will probably need another C.T scan and a bronchoscopy will be needed and that scares me more than anything.

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18 Replies

hun, try not to worry, you need to get a diagnosis firast then when you know what your dealing with,i know thats easy to say but as long as it is not stopping you getting around you need to go and enjoy your life - worry about stuff if it happens.

the best bit of advice i can give you is to say you have a lot of questions and when you get to see the doctor they literally fly out of your head - write a list of questions to ask when you see your doctor.

Dont be sorry for writing a long blog - everyone of us on here will understand as we have all been there- and remember we always will be here if you need to chat.

k

xx

Hi All

This is a difficult time for many in your position denominator finding your place while you have an angry spirit questioning why this has happened to you.

Take a step away from your problems to look at the whole question of how to understand what must happen to find the peace you need while calmly viewing questions individually.

kind regards Robert

jancol profile image
jancol

Hi - firstly, don't worry about writing such a long run down - you're just getting it all off your chest and that is what this forum is all about. I was diagnosed about 18 months ago with COPD and I remember receiving no further information about my condition at all. I wouldn't go on the internet as you tend to get a lot of rubbish and there are nasty people out there who make things up to scare. The most I learned about my condition from the the BLF and I have only just changed doctor's surgery and have had a fresh viewpoint. Do keep on asking questions on this forum as, although I am very new to it, you are receiving advice from people who are actually living through much of what you are. I have found it a huge help already. It could just be that you have had a chest infection and pneumonia - you will feel really wretched with that for some time, but you really will have to wait until you are properly diagnosed and then you can look for more info. It's a shocking disgrace to me that people with very frightening lung conditions are just left alone with no info. I only found out about the BLF thanks to my daughter who googled it for me. I really hope you get a speedy diagnosis and can then concentrate on managing the condition. Take care. Best regards.

denominator profile image
denominator

Thank you for being so understanding, yes Krazylady1961 that's a good idea and yes I have noticed we seem to remember the questions we want to ask only once we have left the doctor.

Stich I came by the name because I like to work with computers such as programming MMORPGS, building/hosting webpages and to many other computer related things lol.

I agree jancol which is why I am glad I found this forum, as well as being worried I am still just taking things one step at a time and trying to forget about it in the sense that I have currently been working on yet another webpage just to occupy my mind a little.

Yes I understand this cheekygirl and can imagine that a lot of my symptoms at times can just be panic attack related, it may have just been as jancol mentioned and I'm still getting over pneumonia. I really need to just wait for my blood results first and for a bronchoscopy.

Again thank you to all that have replied, I have not long woken up and it is 6:00pm and many would say but that's a lot of sleep to which I reply I fell asleep at around 10:00am after writing my original post. Insomnia is great for computer programming and website building but not good in general lol.

in reply to denominator

Hello Deno,

The spiro test is the first one any person should be given if COPD is suspected.

About whether your doctor should be able to do the test him/herself:

Well in this day and age, all doctors ought to have a spirometer in their surgery... but, they do not, and many doctors don't even know much at all about the condition(s) that go under the umbrella term COPD.

However, I was diagnosed in 2006 and my doctor, though being part of a flashy, modern looking clinic (not huge) with all sorts of trendy-medical-things in there (like being pro homeopathic, referring you for haptonomy, acupuncture) , didn't have an in-house spirometer, but did refer me immediately to a place that had certified testers doing only that job all day long.

Get second opinions, this is everyone's right and any decent practitioner would/should recommend it.

You need a spirometric test, in order to determine whether you have COPD

If I spat up blood I would be just as worried as you were.

The Doctor that said he suspected emphysema should have offered you an spiro test as soon as possible or else not told you that at all.

You need to go and demand a spirometric test.

denominator profile image
denominator in reply to

I have read a lot about the spirometric test, could I get this done at my local GP?

RaspinRon profile image
RaspinRon

Hi denominator, sorry to hear about your problem,when I started with my illness it took quite a while for my consultant to arrive at my eventual diagnosis of I.P.F with emphysema.I know this will be hard for you but the trick is to to accept the cards you have been delt and keep possitive about the future. I didn't have a bronchoscopy as part of my testing ! And I refused to have a Lung Biopsy as it was too intrusive and came with its own risks. My consultant agreed with me and I had a hi res CT scan which confirmed the Pulmanary Fibrosis. Ask questions and make sure you understand what you are being told. Visit this forum whenever you need help. I'm new on here myself and I wish I had found it months ago. Nobody in the NHS referred me to any Rehab scheme or help group, had to do it myself. I'm 18 months down the road now and with drugs and exercise I'm quite stable and still enjoying life so keep your chin up and battle on. Best wishes,

Ron.

dinnyrayner profile image
dinnyrayner

Hi Denominator ,

Spitting out blood must be scarey but i agree with TJohn , a second opinion would be a good idea . I have not heard of anyone with emphysema who can run upstairs , maybe i have only known people with severe emphysema but as far as my experience goes being short of breath is the first sign . I hope it turns out that you have a temporary condition xx .This forum is great and we are all here should you need any help or advice , or even just a chat , we have all been through the process and all had different experiences so one of us should be able to help you xx , most of all don't worry , new treatment is coming out all the time .xx

Gerd1 profile image
Gerd1

Try not to worry, I know that is easier said than done, and dont read too much on -line. Your imagination will run wild. Everything will be dealt with I'm sure .Until we hear from you again, take good care !

denominator profile image
denominator

Well one thing I know for sure regardless of whatever results I get is that this community is a really good, caring and understanding community and I am happy to be a part of it. I am getting more skeptical of the specialists assumptions for various reasons, one being in all the years I smoked I never once had any cough from it yet he never asked about my history. Secondly as mentioned I have no problems running up and down the stairs at all. I have read what people here are saying but whatever it is I have/had doesn't seem to be the same? Maybe I do and maybe I don't but I will let you guys know and again thank you for being understanding as it seems nobody else is and people I know are just instantly dismissing it which is good in one way I guess.

denominator profile image
denominator

Spirometric test this Friday at 15:50, I just hope my local GP is a bit more informative than what my hospital was. The medical practice was also surprised I had not had a spirometric test already as well.

denominator profile image
denominator

Yes my doctor heard a concerned phone call from me lol. It might still be possible that I do have it then even though I am still able to get about quite easily?

I have to admit I had a few issues yesterday whilst out in my car waiting for my cousin to return and breathing seemed a little difficult, I'm also having a little difficulty in trying to sleep. I mean I'm waking up feeing panicked after around ten minutes or so of sleep.

When I do finally sleep then I seem to sleep okay but as soon as I wake then I'm clearing my throat again :( I've got crazy pins and needles all up my arms and hands but contribute this to quitting smoking.

And all I can hear right now is my guts moving around yet again which seems to be associated with what is going on with me and an horrendous amount of wind?

I'm scared that it's going to get severe extremely quickly and just kill me in the next coming weeks because one moment I feel not so bad then boom I feel absolutely terrible.

I also have severe psoriasis so I'm wondering if this is also contributing to it?

in reply to denominator

Here follows an excerpt from the website called: webmd.com/lung/copd/gol...

Because of lung damage, people with COPD take longer to blow air out. This impairment is called obstruction or airflow limitation. An FEV1 less than 70% of FVC can make the diagnosis of COPD in someone with compatible symptoms and history.

In GOLD COPD, classifications are then used to describe the severity of the obstruction or airflow limitation. The worse a person's airflow limitation is, the lower their FEV1. As COPD progresses, FEV1 tends to decline. GOLD COPD staging uses four categories of severity for COPD, based on the value of FEV1:

Stage I

Mild COPD

FEV1/FVC<0.70

FEV1= 80% normal

Stage II

Moderate COPD

FEV1/FVC<0.70

FEV1 50-79% normal

Stage III

Severe COPD

FEV1/FVC<0.70

FEV1 30-49% normal

Stage IV

Very Severe COPD

FEV1/FVC<0.70

FEV1 <30% normal, or <50% normal with chronic respiratory failure present*

* Usually, this means requiring long-term oxygen therapy.

__________________________________________________

Continued excerpt from: webmd.com

What Do the GOLD COPD Classifications Mean?

The GOLD COPD criteria are an attempt by health experts to group people together based on the severity of their COPD. This process is called COPD staging. Accurate staging, or knowing the severity of your COPD, could have various benefits, such as:

Helping people with COPD understand their disease better

Helping doctors make better treatment recommendations for people with COPD

Helping people with COPD plan for their future, and predict life expectancy

The GOLD COPD staging system can be helpful toward these goals. But GOLD COPD staging is not accurate or precise enough to predict symptoms or life expectancy in individual people living with COPD.

One problem is that the GOLD COPD classifications only consider a person's degree of airflow obstruction. On average, people with severe airflow obstruction from COPD do have worse symptoms and a shorter life expectancy than people with mild obstruction. However, many other factors beside airflow obstruction influence breathing symptoms and life expectancy, such as:

Overweight and obesity

Smoking

Other medical conditions, especially heart disease

Physical fitness and exercise habits

in reply to denominator

Remember, your body was used to an abnormality, what was abnormal had become normal, through habit, even though it was harmful to you = smoking.

Seeing as ho the lungs are not made to inhale smoke but oxygen, then for as long as you smoked you were starving your body of the actual fuel it needed = oxygen, suddenly you are not smoking anymore an your body is having a new experience, namely, getting air in which isn't adulterated by all of the poisonous smoke, the irritant = smoke has been removed and the supply of fresh air is causing your body to change, in that it is starting to work how it should work, namely the oxygen having free rein to do its work, so your bodily functions change in many ways,without the poisons to start with your taste buds start to become or sensitive, your appetite in most cases then, will change, as is commonly known when smokers quit, it increases, as the oxygen is able to do its work better the organs are stimulated and smoking represses appetite, works as a replacement or substitute, smoke, coffee, smoke coffee, smoke coffee or tea or whatever your drink is.

This all mean rthat one cannot expect the body a highly sensitive instrument/machine, to adapt automatically, it's like having a bowl of dirty old washing up, that should have been cleaned long ago and is mouldy and god knows what, then you add hot water, washing up liquid, and you let it soak a little while and after some time it looks even worse than when you started but in the end, everything is nice and clean.

Well, the lungs clean up too, and it is never too late to quit smoking, as with time....

Within three months of stopping smoking, the lung function (the amount and speed of air that can be inhaled and exhaled) begins to improve.

As the lungs clean up ridding themselves of debris the reactivated cilia may cause a person to cough more than they did before, because the little hair-like projections (cilia) in the airways help you to cough up junk.

Interesting informative article in TIME

time.com/time/health/articl...

I'm an atheist, thank God for that.

Hello Dem

Very good move to sort the spiro test,

it is ''the'' test for defining whether or not you have COPD, and under COPD you could have either emphysema or chronic bronchitis or a mixture of both.

Emphysema is when the miniscule air pockets called alveoli become destroyed. These tiny pockets are the place where gasses are exchanged, so oxygen in and the rubbish out.

The air becomes trapped in your body, or lungs and seeing as the air is still in there, you cannot get enough air back in to cope with the varying degrees of need your physical activity (movements) puts upon them (your lungs().

So the best idea, I find, is to keep it in mind that when you are feeling short of breath and cannot get any in, as your lungs feel shallow, concentrate on pushing/blowing/ breathing out, the more you do, the more air you can then get back in, in the area and space you create when expelling rests of air.

Seeing as how every single case is different, according to the individual, you need to primarily listen to yourself whilst gaining all you can which is factual, and comparing your own experiences with other peoples but not then seeing someone else's experience as any gauge you should be using for yourself.

I was diagnosed in 2006 after years of heavy smoking, I was told I had mild COPD, I can run up the stairs, I can ride a bike and not get out of breath, far better than I ever could before I quit smoking, yet I do get out of breath, in my case I feel it when eating, especially very hot food, and I feel bloated if I eat late and have found I can handle eating far better during the day, so I leave enough time to digest it too and so that I am not already tired before I start eating.

The smaller portions are a thing I've been trying to get into. By using smaller plates. I always used t dress my plates of food up as though they were to be presented to a team of woodcutters, sailors, mountain people, I mean heaped up and with the idea in mind, I need all this, to make me strong.

My weight has changed since I quit smoking, I eat way better, my face filled out and people said how different I looked, younger, etc.

You have tingling hands and so on, I do too and I really do not like that, I get it when I go to bed.

Yet I know I could and can improve this if I can arrange rehabilitation, I need the regularity, the appointment where you say, tomorrow I go to rehab place and need to be there at 1.

If I don't have that, I lack regularity, and forget anyhow, to exercise, and I work at the computer, something I began to really dislike because of my situation and needing the movement.

Another important thing I discovered and found out I needed o understand was how when before this illness I was simply tired, now if I am tired it doesn't mean the same thing, it means that the tiredness can be exhausting, as it means I can feel my heart pumping trying to compensate and pump enough blood around my system to aerate my body and so if already tired in this kind of way, I could be sitting on the sofa having done nothing but will have laboured breathing, which is like you see with animals panting, like lions after eating food, and so this is why when you suffer with COPD it is no joke anymore to exert yourself not through exercise but through lack of sleep etc.

My own framework for the future, ''I know'' must involve somehow living according to regular times, eating at regular times and alleviating all unnecessary stresses, so that just like when a baby you cry because you need food and live according to the clock that way, the clock or bio clock in our systems that wants this regularity. So if we eat each day at 12, already around 11.30 we feel pangs of appetite, and at 12 be ready for food and enjoy it with a good appetite.

All of this means of course we will digest it better do, this is because human beings are creatures of habit, just like plants are, and animals too, we get used to a thing, and then our systems adjust to that., even adjust to wrong things and prefer that to the better alternative, up until one turns that alternative (better option) into the habit.

Informative link: webmd.com/lung/copd/gol...

denominator profile image
denominator

Thank you TJohn and I'm also an atheist.

Yes I've read the webmd thing a few days ago just to try to get an understanding of what COPD was/is before stumbling across this forum.

Everything I have read from you makes perfect sense and I guess more than anything with me right now is the fact that I'm still trying to come to terms with the possibility of actually having COPD.

Well originally my appetite exploded when I first stopped smoking and now I don't have any appetite again at all, my sense of taste isn't that great still but my sense of smell is difficult to say the least but again it has only been three weeks of not smoking so I guess I need to be patient with it. I can smell things but find it hard to smell if that makes any sense?

I will definitely have to try to regulate an eating pattern as well as regulating various other things like sleep which will be difficult as I suffer insomnia already, the worst part of it is being unemployed which DID regulate things whilst I was working.

Again thank you for the time and patience with me, not long had a bit of a row with my mom who asked me about if I'm still looking on the internet. I had to tell her I'm talking to people who HAVE COPD and not just to people using opinions without any experience and then she suddenly stopped.

She doesn't want me to worry and I think she is sick and tired of me talking about it which is making me miserable.

darbrehm profile image
darbrehm in reply to denominator

It is two years later, denominator.....what is your current status? I hope you will have a great update for us to hear....I have read many blogs re: emphysema and all of them seem to be a couple years old....those of us looking now would really love an update...Thanks.

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