How Sick Am I ? I Have Emphysema

[madametobacco49]

I have been on o2 since dxed with emphysema 2 and half yrs ago--after I quit smoking--in fact 6 months after,I begin to feel short of breath-My case is sposed to be mild--and no bronchitis just emphysema--fev 80% i dont know why im on this or why my o2 drops into the 80s if im up moving within 5 mins--but I worry about my ability to stay where im at--and frankly I haven adjusted to be tethered 90& of the time or carrying o2-we must all stay positive everyday--Sometimes I dont have the energy for even that-and I wonder why so many arent even on o2.... Hugs-MmeT

[sassy59]

Hello MmeT, I can’t really answer your question other than to say everyone is different. Pete has sarcoidosis and COPD (bronchitis) yet isn’t on oxygen because he doesn’t need it.

Maybe others will be more helpful. It’s good to hear from you. Love and hugs. Xxx 😘💖

[madametobacco49 in reply to sassy59]

Sassy--so good to hear from you--really,truly.. I need to get on site more often--I have stayed away somewhat --maybe some sort of denial-and after the several years I spent here with my smoke quit I guess I was running in a sense--because I had a lot of pain here and more was coming-The tears --they flow now--and I wish I could hug you because you have made me realize I need to be back here--Sincerely and with a heart full of love--MmeT

[sassy59 in reply to madametobacco49]

Bless you MmeT, don’t be upset, we’re here for you so please remember that. Dry those tears and talk if you need to.

Lots of love to you. Take care xxx 💖❤️💕

[Damon1864 Volunteer]

Hi everyone is different and have different ways of coping. I have my darling days but continue to stay positive, this helps. I think of all the wonderful people and things in my life which keeps me fighting on. 😊 Bernadette xx

[Hidden in reply to Damon1864]

What a brilliant and positive reply

[hypercat54]

Hi I am very surprised with an 80% lung function that you are on oxygen 24/7. x

[madametobacco49]

I see cardio regularity and have had all allergy tests-it may be tied into heart thing--I am going in soom to both so will see where im at now--thanks for writting--MmeT

[madametobacco49]

yes--i am too--but like i said--i fall to 80s quickly without it--so i must have a saturation issue--when i was first put on it the dr never even checked me--just sat at desk and read report--no exam of any kind.. and so it has went with current drs--one of which is heart and one lungs-i did post my breathing tests on here somewhere--hope you are doing well--MmeT

[Purton]

Listen I had to people that I loved and cared for I saw my partner die in hospital it isn’t nice I am very true full this isn’t good you won’t get any better if you amoke try and give up hun do everything they tell you to do take good care

[madametobacco49 in reply to Purton]

i dont smoke--3 yrs in november--thanks for reply--MmeT

[stamford1234]

Oh dear MT, I think it is you that needs the hugs. You seem very depressed. Make an appointment to see your Dr. In the meantime don't be a stranger here any longer. It's a great place for a pick me up and some reassurance x

[madametobacco49 in reply to stamford1234]

Im not really depressed--just saddened at an unsure future--and adapting to it--MmeT

[Hidden]

Everyone’s different. I’m borderline stage 4 at the moment, have chronic bronchitis and emphysema and don’t use oxygen. I’d focus more on doing things that make you happy and try not to think too much about the negatives 😊

[madametobacco49 in reply to Hidden]

thank you for good advice--MmeT

[Ergendl]

I wonder why your 80% lung function isn't translating into adequate oxygen saturation in the blood when on the move. Have your doctors investigated that? Are you able to breathe deeply into your lungs with diaphragm breathing?

[madametobacco49 in reply to Ergendl]

i have trouble emptying my lungs--classic emphysema--so it is hard to fill them--i dont know why i wouldnt be saturated--I see pulmonary soon and I have a lot of new questions--my pulmonary showed me my lung xray--and there are sort of little holes in them--He said that many aveoli are shot--so I dont have good 02 -co2 exchange--Thats all i kno--I think swimming is helping my breathing--Ex-smokers have a tendency to breathe shallow so I have to work on that--and when I do I can keep saturation up longer-We truly are all different--MmeT-

[Ergendl in reply to madametobacco49]

Keep singing. Use singing exercises on YouTube if you can't face going to a singing group. That will strengthen the muscles in your chest and help you to expel more of the trapped air.

[madametobacco49 in reply to Ergendl]

Hello Ergendl--You know I have noticed just talking helps keep me use less oxygen--so you have something there.I went to my daughters one sunday and of course we talked all day. I didnt even need my O2--She had central air and that was the only thing I could attribute it too but at home even sitting in front of my window air this doesnt happen----I live alone and many days dont talk to anyone--It is sad to think this is a possibiltiy--but I think it may be true...I must start singing or talk to myself--thanks for a very good idea--hugs,Mmet

[Kristicats in reply to madametobacco49]

Or talking to yourself as I seem to be doing regularly 🤨

[K4ttt in reply to Ergendl]

Hi Ergendi, I had to reply to your comment .... Singing is a brilliant way to get air in your lungs & believe me I’m no singer well not any more lol but I sing I my car all the time. Sing as loud as you can & know one can hear you 🎶 🎵 😀 thanks my friend 👍🏽

[lKeith]

madametobacco49

Hi, I've recently been for the oxygen test and told at the moment I don't need it, thankfully.

If you any doubts you could try for a 2nd opinion, go privately if needs be, if you don't need oxygen don't have it. It's restrictive getting around as I am sure you know especially flying.

IKeith

[madametobacco49]

A very good idea Keith--Ill see if i can navigate that. As I said in a previous post my support person recently died and so transportaion etc are difficult right now--but I will find a way--as this is important and yes it is restrictive. I want to fly to Oregon to see my daughter and it is a hassle and scarey for me--thanks--MmeT

[Kristicats]

Was your emphysema diagnosed via a ct scan? I haven’t personally come across anyone with mild emphysema on oxygen. Do you know what your Fev1 Reading is? Perhaps there could be another explanation . I think only a respiratory physician can find out for you. Sorry not much help but feel you need a referral straight away and some answers as I’m sure you should not be in this position with mild emphysema alone. Are you on any regular twice daily/ once daily inhalers ? Cx

[madametobacco49 in reply to Kristicats]

this was done by respiratory physician--I had a cat scan of lungs and showed emphysema--i posted a pic on here sometime back as well as tests below

[madametobacco49]

go figure

SPIROMETRY:

FVC 2.21 liters, 76%. FEV1 1.77 liters, 81%. FEV1/FVC ratio 80.

LUNG VOLUMES:

TLC 4.47 liters, 92%. RV/TLC 94%.

DIFFUSION CAPACITY:

Corrected DLCO 11.90 mL/min/mmHg, 59%.

IMPRESSION:

Mild reduction of FVC, with normal FEV1, preserved FEV1/FVC ratio, and normal total lung capacity. No evidence of obstructive or restrictive lung disease. Diffusion capacity is moderately reduced, suggestive of pulmonary parenchyma or vascular process.

[madametobacco49]

that has all been done---MmeT

[Hidden]

Hi,

I am on oxygen for oxygen desaturation so whenever I start to walk around or try to exercise my sat's drop considerably.

I along side lung disease have heart disease so the combination plays havoc on the blood oxygen.

I tried smoking in my teans on 2 occasions, coughing my head off after one puff decided this was not for me so have never smoked.

I do believe it depends on the desaturation level for the need of oxygen, some people's desaturation levels are extream and some only mild and stay above 85%spo2, which the walk can prove when you are tested in the respiratory clinic.

It seems oxygen will only be given for desaturation of a certain level, and yes blockages in the heart also help towards the desaturation level, I am under both Respiratory and Cardiology which I know do hold meetings with each other to include the lung function and x-ray-ct-mri team, so a thorough consultation of my medical issues. (They obviously discuss other cases as well)

Ronnie

[madametobacco49]

Hi Ronnie--I do have a heart component--but it isnt to serious--and has gotten better-no blockages.. I am scheduled to see my pulmonary soon and then heart dr--I am doing a holter monitor next week--i hate to do it because Im having a lot of pvc's due to anxiety at death of support person which has created some uncertainty in my life--I wonder if I should wait....I was dxed with CHF--but it is better-with swimming,walking etc--I was dxed with afib after an albuterol inhaler derailed me--that too I believe is better. I guess Ill find out-but as you see above talking helps me--I can breathe good with no O2 swimming too(no fancy stuff-just floating holding onto a noodle and moving feet as if walking)--I think this has to do with being weightless. I gained 40 lbs quitting smoking and i really think this is as deadly as anything--so workin on that too--I will be posting more--Keep in touch--MmeT

[Kristicats]

Interesting reply Redsox

[Kristicats]

Please let us know after your appointments , very confusing for you. Good luck Cx

[madametobacco49 in reply to Kristicats]

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