Told i have mild emphysema

Good afternoon John.  Hope your day has been a good one.  I am a bit confused at why they have not done several tests on you or perhaps they have and you just have not spoken of them.  1.  Have you had a mri with contrast of your lung and have you had a saline wash and biopsy of different areas of the lungs.  2.  Have you had the FEV Sprirometry tests to check the levels of expelling oxygen?3.  Have you had further testing inside an enclosed tube where you breathe very fast and then continue to try and push air while there is a plug put over the area you would blow out of (you cannot see it because it is all computerizer)  but you have to push and push an dpush your breath until they tell you to stop.  4.  Have you seen an allergist and had all the skin tests to see what all you are allergic to?  These are all things that I have personally gone thru in a very short period of time.  In fact the allergist did 85 shots (skin tests) before I ever left his office.  I looked like a beehive had attacked me, but I wanted to know everything .....I am in the later stages and yes it sucks....but I am working to improve my health (even though I do go thru periods of it's just not worth it?  because I now must separate myself from crowds, children with minor colds, pollution, cold climates, hot climates.  I sometimes wonder where is a safe place for me?  I don't really know since everything the Allergist tested me for I was allergic to....my FEV's are horrible. .08  they should be in a range of 80 and I am no where close.  I started swimming underwater laps in the pool shortly after diagnosis and that has brought the numbers up slightly.  I don't have to use the nebulizer as often as I was ...which before diagnosis was ever 4 to 6 hours.  The wheezing was horrible.  Now, if I just stay relaxed, out of the heat and over  exertion I can get away with about 1 treatment every 2 to 3 days, but I never go anywhere without my nebulizer .  I take so many different kinds of medication to be honest, I don't know what works and what doesn't.  I do not take the muccinex they recommended because it is a terrible stomach upset for me.  I really can't complain, it's just I feel very isolated and it's no ones fault but my own.  I want to go and I want to be with my grandsons and my sons, but that is not possible unless the weather cools down and I can get back East (SE) to see them.  I just cannot be around all the dog hair, cat hair, carpets, or dust in certain areas of Georgia.  I carry my medications and all precautionary measures of medication with me.  i.e.  antibiotics, steroids, tamiflu, and if I feel bad I am not to assume it is a 24 hour bug, I am to go immediately to the hospital.  I will next month get my flu shot and my pneumoccal pneumonia shot....not that it did much good last year, I ended up with 3 bouts of pneumonia and the last one almost took me out.  That is what they fear, that pnuemonia will be the worst that I can get.  So living in a semi bubble is what I do.  I don't go in crowds, I am miserable....honestly.  I even asked my husband last night if he would be angry if I just gave up because this was no way to live.  I have no idea what God has planned for me, but I want to be around people ( carefully) but my family is very important to me...so I want to celebrate with them....Time will tell, I hope you find all the answers you need and I pray you get the best care possible.  Get yourself strong, don't smoke....at all....don't even go near people who do it.  Make sure you doctors sit down and talk to you...If you need to be pretty vocal about what you expect of them...remember you are paying them, not vice versa.  I have wonderful doctors but I have to be the pro-active one.  not them....Take care and I'll look forward to hearing from you.   Blessed abundantly, I remain breathless.

 

Hi,

All i have had done is a ct scan but that was to try and find out why i have lost wieght, i never had any symptoms of emphysema/COPD i don't get breathless or anything really.

But i had my ct scan results. and he said there is signs of smoking i take it your a smoker. but that's by the by and carried on talking saying i also have gall stones and some bowl problem and booked me in for a barium meal x ray to see if i have an hiatus hernia.

Next day i did call to ask will have any more test for emphysema/COPD and his secratary said if the specialist thought it was any to be worried about he would of sent me to a chect specialist.

I am so sorry to hear your in the later stages and really hope something chages for you and you get a bit better, i have grandkids and would like to live another 15 at least to see them grow up.

Can i ask how long you have had COPD and did you carry on smoking at all. 

Hi,

All i have had done is a ct scan but that was to try and find out why i have lost wieght, i never had any symptoms of emphysema/COPD i don't get breathless or anything really.

But i had my ct scan results. and he said there is signs of smoking i take it your a smoker. but that's by the by and carried on talking saying i also have gall stones and some bowl problem and booked me in for a barium meal x ray to see if i have an hiatus hernia.

Next day i did call to ask will have any more test for emphysema/COPD and his secratary said if the specialist thought it was any to be worried about he would of sent me to a chect specialist.

I am so sorry to hear your in the later stages and really hope something chages for you and you get a bit better, i have grandkids and would like to live another 15 at least to see them grow up.

Can i ask how long you have had COPD and did you carry on smoking at all. 

Do u lose weight w ephsema COPD?

What do u mean u can't go in crowds? I agree don't go in or around smoking areas, n or alot smoggy areas n in bad weather! I have stage 2, 57% is my FEV1 NUMBERS,SO WHAT AM I. FOR NEXT? I. TRYING TO LOSE MORE WEIGHT BUT ITS SLOW, SOMEONE SAID U WILL AUTOMATICALLY LOSE IT IN STAGE 3 IS THAT TRUE?

Not sure sorry, 

Charlene.  I have stage 4 with complications.  I have an FEV of .08...so here I am No Oxygen and instead of losing weight the steroids plumped me up.  I only weighed about 104 when all this started...Now  ha ha it's a different story but I'm alive.  You are going to have to be extremely care in listening to all the bad news.  Look at it this way...This is your disease, NO 2 people are the same in how it affects you...so don't go by what is happening to me or John we are all here to support one another but none of us will go thru the same processes.  You are actually in a very good place with 57%....so I'm excited for you...I try laughin a lot, not getting stressed.....my husband and I enjoy every minute of every day and our private time includes something a little unorthodoxed but before our prayer time we read books.  It's just something we started over a year ago and I look so forward to my precious husband reading 3 to 4 chapters in a book every night before lights out.  It's just what you do with each other and make the best of every minute you have .....makes life a lot better.  So enjoy every single day.....God Bless.  Breathless.

 

Unfortunately I couldn't do that if I wanted to,My husband works nights...Mandoratory!..He has been at his job for 25 years.But u r so right about my 57% But I was told it's called Fev1 so what's .8 Fev?

Good morning, well John I think this is great..  Make sure you take a cell phone with a video on it, so you can quickly record everything he says to you.  I pray your FEV levels are good and you don't have any problems.  Hang in there, there are so many new treatments out there now, not like it used to be.  So hang on.....just make sure you are not smoking and stay in safe places.  Let us hear from you on what the doctor says.  It could be news we all need to look into...Wishing you the best.  Breathless

Thanks very much yes i always take my phone and use voice recorder so i can play it back later, because i always forget what they say

Not stopped smoking yet got to much worry with mine and the wifes problems. But intend to wihtin the next few weeks.

PS i will report back here when i have any update

John I am going to be your cheerleader.  STOP SMOKING.....Get it in your mind, if you don't it's only going to get worse.  STOP NOW while you are ahead of this disease.....Please don't do what so many do and say well I'm not at that point of choking to death yet, or not being able to take a drag and breath....It will hit and you will not see it coming.  You've been told...so get a bag of suckers,  throw out all cigarettes, pipe tobacco, and get with it.  I don't want to read about your going under because you didn't stop.  I don't know what your wifes problems are but I'll say a prayer for you....Have a great day.

 

John ,I'm not a nag...But Please it's really important to stop smoking.,I told u I quit smoking when they told me I had COPD in stage 1,10 years ago in 2006!I'm still suffering from then on.But I'm doing everything my Dr. tells me to do! Breathless is so right,u have to quit smoking, don't wait till they tell u ,ur in stage 3 or 4 If ur in moderate Ephsema ur in stage 2 ASK QUESTIONS WHEN U GO BACK TO UR DR.I DID,GET PHAMPLETS IF NEEDED! GOD BLESS U ! N BREATHLESS IS RIGHT U NEED A CHEERING SQUAD...N WERE IT! WERE HERE IF U NEED US!

I am going to stop in 2 weeks time after i have all this out the way and my results that's 100% and i will never start again. Did you stop straight away or carry on smoking.

Thank you for being my cheerleader and the prayer

You got me thinking now and your 100% correct i need some Nicorette gum i will get some in the morning and stop from then, instead of waiting 2 weeks.

I am my own worse enemy saying i will wait 2 weeks that will just be more damage.

Hi i am from today but i don't know what stage i am they have not told me or done any tests yet ?

Got have a Spirometry luing function test in 2 weeks

John you are in the UK you've mentioned,  doctor's surgery usually has a cessation clinic to help patients to stop smoking, these clinics do advise you to set a date to quit, you may want to check in with your GP surgery and ask for an appointment with the cessation clinic.

also check out 1st 3 links from this page: https://patient.info/search.asp?searchterm=stop+smokingt&searchcoll=All

Having said that I didn't wait either as my appointment with the clinic was over 3 weeks away back then. I was concerned about further lung damage, not being able to breath well at the time and no energy for speaking never mind smoking.  

Wishing you every success with your quit.

Good morning John....I am very Glad to hear you are getting something to help you quit.  I want to warn you of one thing.  You are trading one addiction of smoking for the same nicotine in the gum.   Please get you a bag of Tootsie Roll POPs or suckers of some kind.  If you stay on the gum you are going to continually want the nicotine.  The main thing is to get your body free of Nicotine of any kind.  Easy...nope (at least not for most)  throw away all the smokes empty all ashtrays, and wash them and put them where you can't get to them.  Do not let people in your home, car or other personal space that smoke....Set these boundaries now.  If people ask you out and they smoke...say I'm really sorry but I am trying to stay healthy so I choose not to be with your Mates, because I cannot afford to be around the Smoke, Smog, etc.  We are here to help you.  As for me..  Not being able to breath after a trip back east....I was struggling.  I didn realize the back pain I was having was pneumonia, which caused my limbs to swell....It was raining, humid, and hot....We traveled from Texas to North Carolina which is over a 17 hour drive.....we stopped outside Atlanta spent the night (I literally was miserable) but onward and upward we headed the next morning bright and early to Greensboro/Walnut Cove, NC....my sisters met up with us for the wedding Venue....We had the rehearsal dinner, I did as much as I could but I wasn't anywhere near what my sisters and other people were.  The next day was the wedding, Oh yes, I had to get up have my coffee smoke a few then come back shower, makeup and dress for the big event (which I would have had to be dead not to have been there for my precious nephew).....the wedding got started and before the reception was over we were back in the car heading towards Macon, Georgia, south of Atlanta at 3:45am I said I can't see, and I can't ride any longer, so we stopped at another hotel....Up the next morning before 6, showered dressed again for our grandsons Graduation.  We made it to Macon by 11:15 am....which gave us a few minutes to spend with him before he walked with his classmates for a 2 hour ceremony.  Afterwards, we went to our sons, (and I continued smoking) my grandsons could hear something was wrong...but other than look at me and cry they tried very hard to tell me they wanted me around for a long time, not just gifts, and homemade quilts for college.  We left the next day to go further SE to another grandsons graduation...(Now this is farm country)  I mean tobacco fields, cotton fields, soy, onions, dirt roads and what they call Million Pines.....It was seven hotter and the smokers were out in full force.  I wanted my brand but other brands would send me thru the roof.  And they are so smokey, mine were not....WE stayed 2 days returned to our sons, spent the night and headed back to the North Georgia to look at homes, we spent the night and the next day we looked and looked up in the mountains, it was beautiful and the air was clean, however I was so weakened by this time, all I wanted to do was get back to our bedroom at our sons and laydown.  I still didn't know I had pneumonia.  buy Saturday the 28th we left for yet another wedding in Southwest Georgia close to the Florida line.  My feet and legs were so swollen, I literally wanted to take my shoes off and during the reception I did.  I couldn't keep up with people 15 years plus older than me on the dance floor.  I just couldn't breath and was exhausted.  Next morning we got in the car around 4:30 am and drove straight back to Houston...I ran in grabbed my nebulizer and took a double breathing treatment.  By Tuesday my legs would not even swing over the bed.   Next morning we are at the doctors office...I couldn't even hit 90 on the pulse ox....we tried 2 breathing treatments and he asked how thick the mucus was.  I said and I quote myself " it's so thick you could use it as Gorilla Glue and nothing would come apart"...between my temperature and the wheezing and coughing he looked at me and said you just bought yourself a trip to the hospital.  I really had no idea how serious it was.  It was very very serious.  Everyone whirling around and I just wanted to stop the madness.  I never thought of a cigarette never once.  I was literally dying because the pneumonia had turned to pneumoccal with sepsis and a staff infection.  That's some serious mess and that was the 3rd time in one year I had been in this situation.  I have told you this disortation to let you know this one thing.  Please....buy candy, suckers, peppermint tea, tumeric tablets, and ginger.  Keep yourself hydrated very very hydrated.  Drink that water it's the nectar of the Gods.  Cut out the cokes and thick drinks...they are not gonna help your lungs..  Give those nicotine sticks, gum, and patches up.  You might ask them for a prescription of Chantix which helps some people, but honestly you just need to get it in your brain that if you smoke...you are writing your own toe tag of death.  Honestly, I know if I smoke I will end up with pneumonia, which will put me down and kill me.  I know that with all my heart.  Oh, my husband left 3 packs here...why, because he said he could not be my babysitter....that he didn't want me to smoke, but he had watched his father die of this and one of his sisters and he could not monitor me.  So...they are in drawers as are my vape hookah's but I have never touched them.  I have learned if I get stressed and normally would have gone outside and lit a cigarette I will go outside stick my feet in the pool water....walk around the yard...sometimes I will vent, and sometimes I will cry, but with each week that passes I am better.  I have been out to eat 3 times and have yet to smell a cigarette.  That in itself is a miracle.  So, come on John....you're a real man.  Put the dang things down..  You do not want to get any worse and that's all you are doing is making it worse.  Come on John.  You can Quit.  You will Quit.  You have Quit.  Saying a prayer for you today and each day.  You can also find me on FB Sandra LaRue Mosley, Houston, Tx.  USA.....if you want to send a PM....please ask to be my friend....I am rooting for you and every other person.  Today is my Pulmonologist appointment so say a prayer for me as I try to find out about these headaches...that's the only complaint I have.  God Bless....and he will bless you I promise...Breathless

U sound like a beautiful person, I will be praying for you n John,I'm so sorry ur going through so much,U should not have to suffer for smoking cigs...it's not like we did a hard drug or shoot up,I never did drugs or drink,cigs kept me calm from The beatings I took n when I was married before,I'm so blessed today w a great husband n A great daughter,Son n law,w 3 beautiful Gchildren n The Greatest Family bro n sis who also have heart disease n COPD.....MY BRO HAS CHF...MY TWIN!MY SIS HAVE ATHERSCOLIS (,HARDNING OF THE ARTERIES IN THE HEART), LIKE ME, ANYWAY I'M SO BLESSED! SO ANYWAY I WILL B PRAYING FOR U N JOHN! GOD BLESS U BOTH !

Charlene, what a precious and humbling letter, I feel very blessed to have met you through this site.  Wow.  You my comrade seem to have your plate full as well.  I will keep you in my prayers.  Lord knows we all could use all the prayers we can lift up.  I will also ad your brother and sister.  We are blessed regardless of why we picked up the cigarettes we did it and whola the big bad bird of pooland finally poured out on our heads.  I know this....God hasn't brought me through all this to drop me on my head and leave me....there is a reason for everything, we just don't have the long range views that God does,he knows how he will use us and he's the only one who can really take us out of this world that being said.  I had a wonderful uplifting visit with the Pulmonologist today.  Great knews.  Even though my FEV numbers are those of someone in what they call End Stage and what they had original placed me, My Enzymes and my ability to swim, clean house and continue going as I do does not match what an end stage patient or Stage 4 COPD/Emphysema patient should be.  So they have now moved me to a Moderate COPD.  I am beyond blessed and humbled that God has seen fit to bring me back to looking at life as if I may live a long long life.  That's all up to him and I do give him all the glory.  Woo Hoo.  How Great Thou Art....just seems to come to mind..  God Bless you are all in my prayers.  I will be tested in the next few days to see if perhaps a little oxygen will help with the headaches, in the mean time, they have prescribed me with some codiene that should at least lesson the pain.  In the state of Texas you can't just order Oxygen (sounds funny) but you have to be tested through a meter for a night or two's sleep to see if in fact you are eligible.  I found that quite comical.  So we'll see what that test shows.  I told him, I really didn't want to do that but if it will help with the headaches we will consider it.  God Bless...have a wonderful evening....Breathless.

U r so blessed,I'm so glad ur a Christian n believe! I have COPD FOR 10 YEARS N NOW ITS CHANGED 3 WEEKS AGO, I'M AT STAGE 2 ,N My family doesn't believe me when I say Atherscoliosis n COPD STAGE 2 now,So I really don't care! I believe in the healing hands of THE LORD N My Hustand is there n has been every step of the way....AND SEES N HEARS EVERY THING.... TY JESUS ?! I'M NOT TELLING THEM NOTHING ELSE! THEY CAN FOUND OUT ON THEIR OWN! I DONT KNOW WHY THEY DONT GO ASK THE DR,HTHEY R ALL ON MY LISTEN TO TALK W HIM!

Anyways I'm praying for you! I'm so proud for u! 💓 💜 My sis n bro both have Heart disease n My sis has COPD! SHE DOESN'T EVEN KNOW WHAT STAGE ITS IN ....SHES SAYS....THE LORD WILL TAKE ME WHEN HE IS READY N SHE HAS GDAUGHTER THAT LIVES W HER,I WANT TO GET GET PREPARED AHEAD OF TIME MYSELF! THE GDAUGHTER IS 15!