Newly diagnosed and Stunned.

Sorry, should be "throw off this mortal coil"

Martin,  Thank you. I am a newcomer in this "new life" of mine and as such, I am turning every stone possible to get a handle on things. Seems most/all of us who have copd start from a similar place - discovery followed by learning about the disease, our new guidlines for mortality, anything that might make ours "different" , giving us hope that "I" will live out as close to normal life as we had hoped/expected - pre diagnosis. I want the positive/possbile but also the "hard" truths. I am taking the advice of others. I have walked most days for at least 30 minutes, am eating smaller meals - more frequently, eating early dinners as often possible, reducing the single glass of wine that I would have just before bedtime to relax/chill out. I start my meds tomorrow. I am in a serious funk about all this but am simultaneously plugging into the process responsibly. I really have not taken anyones comments unfavorably. In fact, I was generally pleased that strangers responded to stranger. I most likley have the same questions and concerns as others; how fast progression from fev/fvc 67%, fev1 87%, oxygen saturation 97%, clear xray, treadmill test 14 minutes on incline with HR at 198, BMI 30, some breathlessness but not serious, some consistent mucus production but relatively minimal, some fatigue but able to work 50plus hours weekly in a stressful job and full time care of my daughter and home care. I read things from 50% chance of making it 5 years to "as many as 10-15 years- or maybe longer". I was a 6-9 pack year smoker who was raised in a smoker household. I quit smoking 2.5 years ago at the age of 56. I ramped up to less than a pack per day beginning at around the age 50. Before that is was 2-5 cigs per day "ish". I am learning that there is no one size fits all prognosis and accept that though I suppose I am still searching for information which may correlate with my situation and somehow do what I can to relate it as closely possibe to my situation. I have a 13 year old that i am soley responsible for, had plans to retire in Mexico at the age of 70 and live a modest but interesting post retirement life. So, i confess to being scared as hell, embarrased that I did this to myself- probably. Ultimately, I do respond most favorably to "pragmatic"/realistic data and clear anticdotal information. Please share.

Regards,  LT

Thank you HC. However I respond to this, it will be the best I can do.  My  daughter and I went to the movies tonight anbd we raced across the street....She told me when we got to the other end of the street that I needed to get in shape cuz I was breathing to hard .

I will be!

Can you tell me how to tell if an exacerbation is coming on? have you ever had to be hospitalized?

LT

 

If you are already under the weather with a chest infection, exacerbations can come on at a moment's notice, be it by inhaling smoke, diesel fumes or water vapour or simply by bodily resources being diverted to digest a big meal - which is what probably happened to me, Four times. Whatever, a coma quickly follows, as do blue flashing lights and a week or more in hospital.

And if this worries you, just think what it actually does to your spouse / partner ! 

No I haven't Larry and don't expect to be,  not with my lung function and you shouldn't be with yours either.   Like I said I lead a near normal life and so will you if you stop yourself expecting the worst!  

You will get to know your own body but I usually get a chest infection after a cold and then need ab's and steroids.   All an exacerbation is is a worsening of your symptoms,  so if you are finding it extra hard to breathe or cough a lot etc. then you could be having an exacerbation.   If in doubt see a doctor. 

You can let your copd control you or you can learn to control it.  All it means is you do things a little slower.   You are worrying over nothing.  If your lung function was say under 50% then you will find life a lot more difficulty - but yours isn't.   So relax and stop worrying about it please.   x

HC, I would love to stop worrying but until I comprehend "this", the reality is copd feels daunting. I can hear the confidence in all your voices which is awesome and certainly helps to ease my mind.

It has been two-three weeks since I learned of my diagnosis. I have a 13 year old girl who lives with me 100% of the time, am a single Dad and sole wage earner. Like many, I have been learning all I can. The range of information is vast and offtimes scary.

Thank you for your input.  LT

Thanks Martin,

I did send an email to my doctor for this opportunity.

LT

Vee2, You can likely imagine what it would be like to be wrong about such a thing. My fev/fvc is 67% with a 12% imorovement with albuterol which every web site I have read ( I have read at least 100) state that even with 87% Oxygen levels that I am mild - some say low moderate and I do experience some modest but definite breathlessness daily. Can you tell me about your experience?

LT

I meant to say fev1 87% and 97% oxygen level.

You could be reading the wrong information Larry outside of what your  pulmo doc at the hospital said regarding the diagnosis of mild obstruction but as I said I'm not a doctor. Just that the original levels you posted seemed very good to me, in the normal range, regarding your FEV1 and oxygen levels.

I would think the major hospital you attended would have reliable information you could refer to.

copied from European Respiratory Journal papers:

Spirometry was performed according to European Respiratory Society guidelines 15, and forced vital capacity (FVC), forced expiratory volume in one second (FEV1) and the FEV1/FVC ratio (FEV%) were measured. Spirometry values were graded as follows: normal (FEV1 >80%, FVC >81% and FEV% >87% of normal value); mild deterioration (FEV1 65–80% and/or FVC 65–81% and/or FEV% 78–87% of normal value); moderate deterioration (FEV1 45–64% and/or FVC 45–64% and/or FEV% 62–77% of normal value); and strong deterioration (FEV1<45% and/or="" fvc=""><45% and/or="" fev%=""><62% of normal value). of="" normal="">

Nice journal however when they say normal what age group do the figures from this journal refer too, as you age clearly they are going to be reduced naturally

You might want to check that out for yourself jillibean by contacting or reading the ERJ papers yourself. Alternatively you could phone the British Lung foundation, I am sure they will be able to answer you. Or if overseas, phone the Lung Foundation or Lung Association in the country you reside.