Copd For 3 Years No Follow Up Apps

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As above i only get asked about my copd now and then by my dietician/diabetic nurse.

I don't know anything really about copd except what i get off the internet and on here.

Who do i ask? my Dr for a Whats What Explanation and Tests.

My copd is not too bad but i would like to know where i stand... ps this forum is very good!!!

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  • Posted

    Your best weapon against COPD is knowledge.  You should learn everything about your lungs you possibley can.  I highly recommend joining COPD international--by far the most infomational COPD website on the net.  Good luck
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  • Posted

    Biggest problem is continued smoking. If you have stage one or two and have stopped smoking then not too much to worry about. Who diagnosed your COPD- they should follow you up once per year minimum. Annual flu jab is usually important although useless this last year and one off pneumonia jab. 

    In the UK Breathe easy is a charity that can help and runs self help groups. 

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    • Posted

      Thanks gp, i think i am level 1 or 2 at worse that i just looked up on above mentioned site. I was diagnosed 3 years ago i was in a coma 10weeks etc but they just got me "better" and shipped me out haha i have flu jabs and the pneumonia last year but i was in hospital at xmas with pneumonia so much for that.. Thanks again TLRO ps i am 52...
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  • Posted

    Hi TheLastRealOne,

    It would be good if you could see a pulmonary specialist and for me, an allergy specialist helped tremendously also. Have a complete lung function study done so you can create a baseline of severity to compare to in the future to see if and how much your lung condition is or is not progressing.

    There are wonderful medications for COPD and you need to try some out to see which works the best for you and make it clear to your medical professionals that you do not want to go untreated if there is a way to slow up the disease.

    Try to cut out all dairy products because they produce mucus and mucus is the enemy which can make breathing even more difficult on top of the disease.

    Hopefully something from this can help you. Remember, you live inside of your body, no one else can tell you what that feels like and you are THE MOST IMPORTANT part of your medical team. Ask nicely for what you want and ask firmly if no one will give you what you want. You are your own best advocate!

    I have lasted for 30 years with a lung function of only 30%. This "miracle" is divine, but I also have taken care of myself, never smoked, and do not abuse my body with chemicals. Exercise and diet and ritually take my COPD medications and keep up with my doctor appointments and go early for help when a flare up comes along.

    Breathe well,

    💛 Dawn, USA

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    • Posted

      dawndedee, you have a long personal experience of living with COPD and obviously have a specialist who helps you. However the drug companies have NOT yet come up with a medication that slows down COPD. There ARE lots of medicines that help with symptoms and prevention or early treatment of infections is vital. 

      Sorry if this contradicts what you believe.

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    • Posted

      Hi gpgp,

      No need to be sorry to contradict what I believe.  Nothing wrong with healthy debate and the sharing of experiences.  However, in my case, I am living proof that COPD, combined with severe asthma and emphysema, has been slowed up.  I have 13 years in a row of lung function studies that show little to no increase in the worsening of the disease.  And I attribute that to my diligence in seeking knowledge of my illness, exploring and finding good doctors.

      When I was born with severe asthma, all they had for me as a baby and toddler up to age seven was Tedral tablets and Isuprel in my oxygen tents and a thick yucky syrup by mouth. I nearly died three times as a child. My parents grew tired of my need for medical care, so I did not see a doctor until I was on my own at age 23 when I was near death.  

      From then on I began to steadily lose lung capacity and the only medications available during those years was albuteral inhalers and Theophylline. All theophylline did was speed up the blood stream so that what little oxygen there was would circulate faster thereby creating the illusion of better breathing.  

      When scientists developed Accolate it was a miracle for me!  I could walk around my college campus and go up stairs without becoming out of breath and finding a hiding place in each building so that I could recover my breath privately before entering the classroom.  People tend to panic when they see me struggling to breathe.

      Not long after that, there were a great many break throughs in science and I kept up with each one of them and tried them all to see what would be right for me. These new medications have slowed down my diseace process even though I am so severely handicapped. I will always recommend the earliest intervention as possible to anyone suffering the way I do.  

      Here in the USA as a child, I was a guinea pig for the beginnings of all the lung functions studies we still use today.  It was sometimes horrific, but I look at it as not bad memories but instead I helped science in my own little way.

      I have had to be my own advocate my whole life and amazingly I do not appear Cyanotic as I should with a peak flow reading average of 150 - 200 which is way way low compared to the standard.  I tatooed color into my lips to cover up the blue outlines in my lips which is the only place blue/purple showed on a constant basis.

      My only hope to make sense of my own life long suffering, now 56, is to share with others suffering the same way with the hope that they will seek early treatment and take care of themselves properly and learn not to panic when they cannot get their comfort breath.  And to make sure they know that we live in a fantastic scientific era where the medications are absolutely amazing!  I use Singulair daily, Spiriva inhaler and BREO inhaler and Duo Neb in my nebulizer treatments I do morning and night when needed.

      Thanks for responding in case TheLastRealOne could use any of this further information.

      Best regards,

      Dawn, USA

       

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    • Posted

      Oops, I forgot to mention the use of corticosteroids which fight inflamation and I do not recommend to anyone to use it as a crutch, but instead only to save your life.  Before all the new wonderful steroid inhalers were invented, in my early adult life, I used it heavily.  Here I sit today with two hip joint replacements and two shoulders that need replaced because the steroids caused Avascular Necrosis in those joints.  My skin is so thin that one brush up against anything can cause bruises and bleeding.  My veins have broken in my hands suddenly.  It is a very debilitating medication, however is used moderately, it is quite a help.  My doc says that the high doses of it given intravenously was the worst when I would need to be admitted to the hospital.  The injections of it are so much safer that my doc said that during a COPD flare up I could receive one injection every three days and it not hurt me the way intravenously did.  Steroid inhalers are better too.

      My advice is based upon my own doctors and my own research and must be discussed with ones own doctor.  Be not afraid of steroids, just be afraid of too much over a long period of time.  

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    • Posted

      You are inspiration DawnDedee! Touche' my dear....I love your response...just shows you are a class act. And an expert at COPD...trust and believe that folks. God also has his hands on you and you help everyone that you share with. I've been on here for a few months and I know you have weathered many storms. Just wanted to give you a virtual hug....hope you feel it!!

      Ladyjack51

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    • Posted

      Hiya Dawn Dee, I went and got alot of help off my copd nurse.

      She told me what level i am 2 as i thought and i have 70% lung capacity and a lot of other stuff in leaflets etc.

      I am glad i took your advice, thankyou again bye for now....

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    • Posted

      That's interesting, I've been on 72% lung capacity since diagnosis about 3 years ago and it's always been called Stage One
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