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How I Feel The Week Ending 01/24/14….. Living with COPD

24 Jan

Some of you regulars will notice a slight change in the title of my post, but it really isn’t a big deal, just a better description of the content of my post.  I have not had a single doctor’s appointment this week, I haven’t made a future appointment this week, and I don’t see the need. This coming Monday is my next regularly scheduled appt with Doc Head, and because it is a regular thing, no need to dwell on it.  That’s all that’s on my table medically for me.  This week has been a 3 week, for a couple of days I almost went to a 2.5, but I have settled in on 3. For the curious, both physical and mental aspects were the driving factor towards pushing the week to a 2.5. As I sit here resting and doing my purse lipped breathing my O2 level is 95 percent.  My heart rate is 98, temperature is in the normal range, and my weight still too damn much, but is working ever so slowly in a downward trend.

This week’s word is a phrase; Stages of COPD.  I don’t know if I have ever really qualified the stages of COPD, I might have made mention of them, but I don’t believe I have specifically address these.  Being quite honest, none of my friends or fellow bloggers have asked the question, either out of politeness, or concern for my feeling, or concerned about how the answer might impact the asker.  Hopefully this will help provide a better understanding.  I am going to start out with “book” definition of the term, as I am in a habit of doing then I will address the Stages of COPD as they have impacted me, and I will try to shed light on when I passed thru a stage to my knowledge.  I am also going to speak briefly on “end stage” COPD, and will provide a link to the site that I worked from.

I have chosen the EMedTV website, (http://copd.emedtv.com/copd/copd-stages) for the “book” definition because it seemed the simplest to convey and understand. Of course I have cherry picked the definition for the purpose of this post, but you can go directly to the site posted about to get the “complete” definition.  Most of the others (and I have added links for a couple of them) go into great detail about FEV1 and its relationship to “normal,” as the baseline for the stage. The problem as I see it is; the sum total of all of us equals the “normal,” where very few of us actually equal the “normal.”  How is that for left-handed logic?

COPD Stages – The four stages of COPD are “at risk,” mild, moderate, and severe. In order to determine if someone has this condition and which stage he or she is in, a healthcare provider generally uses a breathing test called spirometry. (Spirometry is the most sensitive and commonly used test of lung functions. It can detect COPD long before you have significant symptoms.)  The symptoms vary for each of the stages, but generally include increasing amounts of coughing, sputum production, and difficulty breathing.

What Are the Stages of COPD? Based on the spirometry test, your doctor can determine if you have COPD and how severe it is.  The stages are listed below:

  • Ø At risk

  • Ø Mild COPD

  • Ø Moderate COPD

  • Ø Severe COPD


At Risk —
In the at-risk stage, the breathing test is normal, but there is a possibility of developing COPD. Mild symptoms of the condition include a chronic cough and sputum production.

Mild COPD — In the mild stage, the breathing test shows mild airflow limitation. Symptoms may include a chronic cough and sputum production. At this stage of COPD, you may not be aware that airflow in your lungs is reduced.

Moderate COPD –- In the moderate stage, the breathing test shows a worsening airflow limitation. Usually, the symptoms have increased. Shortness of breath usually develops when working hard, walking fast, or doing other brisk activity. At this stage, a person usually seeks medical attention.

Severe COPD — In the severe stage of COPD, the breathing test shows severe airflow limitation. A person is short of breath after just a little activity. With very severe COPD, complications like respiratory failure or signs of right-sided heart failure may develop. At this stage, the quality of life is greatly impaired and the worsening symptoms may be life threatening.

Another link is from Caring.com which I have found to be another useful site for COPD related information.

http://www.caring.com/questions/stages-of-copd

Another site which I have found helpful in my research is About.com, here is a link directly to COPD grades (formally stages) 

http://copd.about.com/od/copdbasics/a/stagesofcopd.htm.

So ends the technical aspect of my post.  I will now relate the more personal aspects of stages of COPD and my journey thru them.  And as a preference I will refer to them as stages, it seems more fitting than calling them grades.  Grades I always seem to think I could improve with some effort, but stages just seem to me to be points.

The first stage is defined as “At risk.” My earliest recollection of being told I was “at risk” was sometime in the 1979-80 timeframe. As far as I am concerned “at risk” shouldn’t even be considered a stage. I think we were all born at risk, some of us by the environment we grew up in, some of us by smoking, some of by the environment we worked in during our careers, even some of us by the very makeup of our bodies, are “at risk.” Add to this the fact that the symptoms are so weak, so minor, that they can easily be ignored, makes being “at risk,” a non-issue.  I can only speak for me but as a reformed smoker I am also sure that the first 293 times a doctor told me I was “at risk” I am sure in my mind he or she was talking about being “at risk” of developing lung cancer.  Way back then the medical definition of COPD had not even been developed or offered as a diagnosis, most of us were told it might be asthma or emphysema, or we could have been told it was a combination of those.  But it wasn’t COPD and it wasn’t terminal.  I suspect that even today 01/24/14, if someone goes into a Doctor’s office and are told they are “at risk” (as defined above) of developing COPD.  They walk out the door going “oh okay, we will see what happens.” For me, I had been going thru the “at risk” stage for years, and paying it no mind. 

I think I completely skip the “mild stage” and migrated directly into the “Moderate stage” of COPD.  I believe it must have been sometime in the mid 80’s that I took my first spirometer test, (the link is below) with the results showing mild airflow issues which I immediately attributed to smoking, and closed my ears to my doctor. At this point I was a bit overweight, and had been riding a desk for a long time, and was still smoking 2 or 3 packs of cigarettes a day.   

(http://copd.about.com/od/copdexacerbation/f/spirometrytests.htm)

But the reality was I was just ignoring the writing on the wall.  But one of the medical issues I was having, were all too frequent bouts of bronchitis. From 1993 thru 2004, I must have had bronchitis at least 12 to 15 times.  By the time I got settled in here in Florida and had my first spirometry test in a decade that my bronchitis had graduated to chronic bronchitis. I started taking medicines specifically designed to help and aid respiratory issues.  It started time nebulized drugs (Dulneb), a rescue inhaler, and the continued use of Theophylline (as much as 600mg 2x now 200mg 2X).  Other than being short of breath all the time (which I attributed to being so overweight) there were no real symptoms impacting my life or world.  But in July 2006 things changed quite rapidly.  I developed a Bi-lateral Pulmonary Embolism, which focus attention on my lungs.  As a result I was faced with a harsh reality.  I had some serious respiratory issues, and to my great surprise it wasn’t cancer. 

After I recovered from the embolism, I had a series of tests including a spirometer and sleep tests.  The sleep test revealed I suffered from sleep apnea, and restless leg syndrome, but with the use of the Cpap machine that seems to have stopped and I do rest better.  But the spirometer test and numerous x-rays revealed scar tissue (from all the bouts of bronchitis) throughout my lungs and significant worsening of the airflow thru the lungs. Now I was on the program, my diagnosis had not been defined as COPD but chronic bronchitis, the medications I was taking doubled and frequency of nebulizing went from 2 to 4 times daily.  In the past I had been half ass in my approach to using the nebulizer and the Advair, but now I started using them religiously.  I was now also put on oxygen at night when I slept.

My movement to the Severe Stage of COPD came rapidly.  In March of 2008 I was hospitalized for having an anxiety attack, tests revealed I had 2 blocked arteries to the heart, and bypass surgery was needed.  The bypass surgery was a great success.  During recovery, while still in ICU, a hole developed in my left lung behind my heart.  The team of doctors waited a week to see if the hole would heal itself, it didn’t, and I went back into surgery. When I came out of surgery I was on a ventilator, my memory is quite shaky here, but I have been told by more than one, that not only did I pull the ventilator out once, but I did it a second time. From that point forward I was restrained to keep from pulling it out again.  After a couple of weeks (or so) on the ventilator, I was successfully weaned from ventilator.  I woke up in the intensive care ward, still violently ill, and fighting.  But complicating matters was the fact that I now had a Tracheostomy (see link below).  It wasn’t a pleasant surprise, but at least I woke. After I learned the trick to talking, I asked the doctor how long he thought I would have to deal with this and he said maybe forever. Well he wasn’t correct after 2 weeks the trach was removed, and I was breathing on my own again. I was finally discharged from the hospital in late May 2008.  But now I was on oxygen 24/7/365, and have been ever since.  I was officially diagnosed with COPD in July of 2008 and that when the decent down the ladder began.

http://www.thoracic.org/clinical/critical-care/patient-information/icu-devices-and-procedures/tracheostomy-putting-a-breathing-tube-through-a-small-hole-in-the-throat.php

For those interested in keeping score my FEV1 is 39.  I meet most of the criteria for the Severe stage of COPD, but thankfully I have no heart related problems.  I have been plugging along at this stage for almost 6 years, yes it is sometimes difficult, but smiling I am here and I am pretty active, but most importantly I am full of life.  Yes it has been a fight, but one that I willingly partake every day.  If you learn anything from this, learn to fight; learn to not give up or in.

This is getting extremely long, and I was going to add the technical definition of “End Stage” and my comments, but I think I will wait until next week.  Of course if you have any comments, thoughts, questions or concerns please ask them.  Take care and I hope you have a great weekend.  GO BRONCO’s – Bill (I am pulling for the Bronco’s because my beloved Redskins suck)

 

 

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26 responses to “How I Feel The Week Ending 01/24/14….. Living with COPD

  1. Chatter Master

    January 24, 2014 at 4:37 pm

    Bill I only ‘liked’ this post because it is so informative and because I LOVE that you are such a survivor. Your journey was incredible and your warrior status in my eyes just went up a notch. I’m SO glad you are still here to tell us about all of that. And to educate us further.

     
    • FlaHam

      January 24, 2014 at 7:46 pm

      Colleen, Soft smile, I don’t see myself that way, I just am not ready to die. There are many folks that are in the same boat I am. They are taking better care of themselves, they are making the necessary adjustments, and they are living their lives as fully as I am. The only real difference I have this as a soapbox. And more importantly I have folks like you that really care, and trust me that makes all the difference. I will continue the word of phrase of the week for the foreseeable future, choosing words and phrases that I have direct knowledge. Please take care, Bill

       
      • Chatter Master

        January 25, 2014 at 8:35 am

        Well, I love your soapbox. 🙂

         
        • FlaHam

          January 25, 2014 at 9:03 am

          Colleen, thank you for standing and listening while I am atop of my soapbox. Take care, Bill :>}

           
  2. huntmode

    January 24, 2014 at 5:03 pm

    Bill, I cannot state it better than Chatter Master above. I have been rated as COPD – Severe. Your thoughts on the At Risk rating are right on the money. This is a fear-driven society and we are continually told we are at risk for something. We tend to brush it off and keep on living.

    Understanding the Fev 1 has escaped my understanding. With the help of your links, I shall pursue it again.

    When they first gave me an inhaler, I, too was half-assed about using it – it took a friend of mine that I respect who suffered from asthma to call my attention to it, as well as the use of the nebulizer. I was having a rough time while at her house and she had me sit down and use her nebulizer – the difference helped immediately. After that, I took it much more seriously.

    Your willingness to lay it all out for us is a gift of supreme benefit. The real deal. Much of the writing on this disease is medical-ese and of milk toast use. You bring it home to us and give us the science, the theories, and then the reality of living with this.

    Thank you, Bill. I am so grateful to you.

     
    • FlaHam

      January 24, 2014 at 7:58 pm

      Hunt, Thank you for you kind words, you are so right our society has programmed us to brush aside many early warnings. Right or wrong, it’s how we are made up. But that attitude does come in handy in situations like this I believe. I really helps me to ignore my illness sometimes. The FEV1 is the volume exhaled during the 1st second of a forced expiratory maneuver started from the level of total lung capacity. Hunt, that is the book definition. I have heard it and used it for years and what I gather is my by measuring how much air you can get out of your lungs in a given moment allows doctors to guess how much air your lungs have the ability to gather and use. My sharing is a simple matter of story telling, just like I have shared stories about Allison, or my Navy time, or any of the other topics I have wrote about. Because I have lived it, it’s easier for me to talk about. If that makes any sense. LOL I don’t have the million dollar education, so I don’t make those calls. What makes this work, is all the wonderful folks (like yourself) that take the time to read and comment.

      Again thank you, Bill

       
      • huntmode

        January 25, 2014 at 12:59 am

        Most of all, Bill, your authenticity rings true. You know what you’re talking about. You know what it takes to get dressed or cross the living room some days.

         
        • FlaHam

          January 25, 2014 at 7:55 am

          Hunt, thank you for that observation. My posts are indeed rendering of my day to day experiences. Please take care, Bill

           
  3. Brenda

    January 24, 2014 at 5:12 pm

    Well, I’m glad you have been dr visit free, that’s a blessing in itself. I’m also glad you are sleeping better and full of life. You have so many positives going for you, your family, your spirit. I like glimpsing your world. Blessings, Brenda

     
    • FlaHam

      January 24, 2014 at 8:00 pm

      Brenda, Thank you for you kind words, smiling it is a victory each week I don’t have an appointment or “forced” visit to the doctor. Please take care, Bill

       
      • Brenda

        January 24, 2014 at 9:49 pm

        I believe it! It’s a battle won, a week to celebrate!

         
        • FlaHam

          January 24, 2014 at 11:22 pm

          Brenda, Smiling, this battle has been won, and now I stand ready for the next. And the one after that, and the one further down the road. Just getting to the next week is celebration enough. Take care, Bill

           
          • Brenda

            January 24, 2014 at 11:30 pm

            Sending healing thoughts your way. Celebrating your success has made me happy. I even tried a brand new form of collaborative poetry. Eeek! LOL I never would have thought I would ever do that 6 months ago. Have a great night’s sleep, my friend! Brenda

             
            • FlaHam

              January 25, 2014 at 8:04 am

              Brenda, Whatever you take away from my postings is wonderful. You write with a beautiful style, and if because of something I said or wrote, you find you want to explore other venues, wonderful, I am glad I gave a nudge. take care, Bill

               
  4. huntmode

    January 24, 2014 at 5:17 pm

    P.S. – I’ve had restless legs since at least 1980s. I don’t recall there ever being a diagnosis for it until recently. The advertised drug for it has such horrible sounding possible side effects, I decided I’d rather suffer with it than take that stuff. The good news is I did find something that helps me tremendously. It’s made by Hyland’s and it is called “Restful Legs.” It states on the bottle that it is homeopathic and relieves: Alivia; itching, crawling, tingling sensation in the legs, urge to move legs, leg jerks.

    While I can get it during the day, especially when sitting for long periods, such as at a conference, a meeting or on a plane, it most often hits at night. I take it when I become aware I’m starting to “dance in place.”

    Mind, I know it happens in my sleep because in the morning my calves throb and frequently my feet ache from whatever it is I do in my sleep. The upside is my calves are strong from all that flexing. 🙂

     
    • benzeknees

      January 24, 2014 at 10:06 pm

      I often get the leg jumping too, in the evening when I put my feet up in my recliner. Because I’m at home I can change positions often, but it’s still there. I thought it was a by-product of the drugs I am on for anxiety/depression (like the palsy in my hands). Maybe I should try the stuff you found.

       
      • huntmode

        January 24, 2014 at 11:23 pm

        Benze, here it costs about $8.00 for 50 tablets. I found 2 work best, they dissolve underneath your tongue and it takes effect in about 10 minutes or so. Sometimes, it takes 3. … 🙂 They sell out very fast locally, so now I buy 2-3 bottles when I can. 🙂

         
    • FlaHam

      January 24, 2014 at 11:18 pm

      Hunt, Without question watching ads for medicines makes me feel that the cure is generally worst than the disease. The last 2 times I have had sleep tests the restless leg was not an issue. Both of those tests had me sleeping with the aid of my cpap machine, which means that when I sleep somewhat properly, my body doesn’t kick and flop around. I am glad you found something that helps, getting rest always does the body good. On a great night I get no more than 6 hours, generally 5 or 5.5 for me, and I rarely nap. So the cpap machine has helped. Thanks for cluing us in on your calves, I am sure they look nice. LOL Take care, Bill

       
      • huntmode

        January 24, 2014 at 11:24 pm

        You scoundrel! Keep those compliments coming! 🙂 Signed, Racehorse legs.. 🙂

         
        • FlaHam

          January 24, 2014 at 11:32 pm

          Hunt, oh the compliments will continue, and I like being a scoundrel, I do that very well. Or maybe I do the badboy with a heart of gold gold, or oh heck whatever LOL LOL — take care, Bill

           
  5. The Persecution of Mildred Dunlap

    January 24, 2014 at 9:01 pm

    Glad for the good things, sleeping well, etc. Accepting the others which you teach me to do with so much grace and dignity. Love your posts. Have a great weekend.

     
    • FlaHam

      January 24, 2014 at 11:20 pm

      Paulette, I have said it countless times, that after early posts, it was all about helping others. I am glad that folks have found my earthy approach to disease to be helpful to them. That’s all I need. Smiling, I hope you have a wonderful weekend. Take care, Bill

       
  6. benzeknees

    January 24, 2014 at 10:03 pm

    Hi Bill, this was very helpful as were all the links you provided. I looked at my Pulmonary Function Test after reading & it finally made sense to me. My FVC is 81%, my FEV1 is 65%, so I guess I am in the moderate stage. The clinician’s diagnosis was moderate airways obstruction. I was starting to feel the effects before I quit smoking, so it’s probably been about 4 years for me. But it has worsened since November, hence the PFT.

     
    • FlaHam

      January 24, 2014 at 11:25 pm

      Benze, I am extremely grateful that you find something in my posts that help you. Some tidbit, some speck of information. It really makes me smile. Thank you for saying so. Please remember I am not an authority on COPD, at least not for yours and barely for mine. In time you will have the same level of knowledge about how the disease impacts and effects you. You will find ways to combat it and make it easier, and I suspect you will find an outlet to share the information you gather. Smiling, it’s all worth while. Take care, Bill

       
  7. jmgoyder

    January 24, 2014 at 11:12 pm

    You are one hell of a survivor, Bill. My hero!

     
    • FlaHam

      January 24, 2014 at 11:27 pm

      Julie, Smiling and blushing, thank you! I do kinda like being a hero, but lets keep it quiet. I don’t want to break my arm patting my back. LOL LOL I hope your well, I know you are up to your eyeballs in things, please take care of yourself. Bill

       

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