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Category Archives: Definitions and Outlook

How I Feel for the Week Ending 08.29.14…

Well the jukebox is back and completely functional, my new computer is sitting here humming away, and I have no excuses.  This post is going to be riddled with music references because I have missed so many opportunities to share with you the music I have been missing during my recent computer mishap.  So without further ado here is our first sidebar: Right off for my wonderful Canadian Friends I have heard several tunes from our favorite Nickelback; including “Next Contender,” “This Means War,” and “Bottoms Up.”  Also I have indulged in Five Finger Death Punch, Led Zepplin, Pearl Jam, and Soundgarden to start the day. 

There really hasn’t been any change at all in status since last week, if anything this week was an improvement over last week.  Yes SOB is still a critical issue, yes I get winded getting winded, yes I need to gather myself before tackling and working my way thru any chore, yes I am coughing and while the cough is productive there is no yellow to it.  All of these things while the same are different and if for no other reason this is a better week because the heat and humidity has been slightly lower.  Sidebar: we have been listening to Halestorm, Gemini Syndrome, The Black Eyed Peas and Shinedown this set.

This week besides the normal visit from Hospice (and a couple of addon visits) I had only one medical appointment this week which was with Doc Lungs.  First, Doc Lungs seems to think I am doing okay, he checked the vitals and listened to my lungs.  He commented that they sounded “normal” for me.  Someday I am going to have to listen to my lungs then immediately listen to the lungs of someone who doesn’t have respiratory issues.  That would be quite interesting and most likely equally educational. This week, besides my normal Thursday visit with my Hospice nurse, I was also visited by Respiratory Therapist from Hospice, and he noticed my weight lost, and stated I sound like I always do,  In addition I was also visited by the Hospice social worker, just checking my head to see if it was still screwed on correctly.  I am assuming I passed her muster because no one has been by today with that special jacket. Other than my normal weekly visit by the Hospice nurse I have no repeat no medical appointments scheduled.

Per usual and considering everything available to me, I am going to rank myself as 2.75 for the week, yes it is a touch higher, but the heat and humidity have been lower and I haven’t ventured out much this week, so that is a fair assessment of my physical health for the week.  Sidebar;  More Nickelback, Lucinda Williams, Heart, Seether, Theory of a Dead Man, and Van Halen have provided the musical background for this portion of the weekly report.  Mental health continues at a 9 level, I refuse to be down more than 7 or 8 consecutive minutes.  Of course this rating doesn’t include the normal aches and pains of everyday life.

So to wrap up week ending 08.29.14, we are ranking the week an overall 2.75, with a 9 on the attitude scale.  So we can move on to the vitals for the week ending 08.29.14

 

  • INR = 2.3 taken 08.25.14 – no change in meds

  • O2 level @ 2.5 LPM = 94 taken 8.28.14 – earlier in week O2 level as low as 77 after brief walk, took 15 minutes of resting to reach 93  

  • Peak Flow = 210 taken 8.28.14

  • BP = 112/68 taken 8.28.14 – earlier in the week it was as high as 132/80

  • Heart rate = 105 taken 8.28.14

  • Temp = 99.35 taken 08.28.14

  • Weight = 259 taken 08.28.14

 

So ends the technical aspect of my “How I Feel This Week” report for the week ending 08.08.14, moving now to the word of the week discussion aspect. This week I would like to spend a couple of minutes of your time say thank you for being here for me.

This will be my 302th post in the 2 plus years I have been writing this blog.  Over that period I have accumulated 378 “followers,” I have received over 2,000 comments and have responded to 98 percent of them so my total comments are over 4,000, and I have been viewed over 16,500 times.

If I could I would write an individual note to each of the people who follow me for whatever reason they do and thank them personally. I would. I would take that moment and say without them, without their support, without their comments, this blog may have died on the vine.  So collectively thank you.  Thank you for the time you spend with me, thank you for reading my words and sometimes sharing them with your followers.  I also want to thank you for each and every comment including the smiley faces and kisses.  Sometimes so much can be said with an emotional icon.

I want to thank you for indulging my rants and rages, and my sometimes melancholy posts.  Smiling also thank you for listening to my endless babble regarding how I feel for a given period of time.

As I struggle with my COPD, my blog has become my beacon, my shelter, my friend, and the pillow I cry on. It has provided me strength and a place to display my sense of humor, as well as, my serious side.  But even more importantly it has become something special to my friends and followers.  I can’t even imagine what it means to everyone that reads my blog, but they do so for their own reasons.  Some because they to suffer from COPD, some because someone they love suffers from this or another terminal disease.   My blog isn’t a cure, I am not a doctor, I am a patient just like so many of my readers.  I draw strength from my readers and hopefully they draw some from me as well.  I know that without my readers my world would be much more difficult, and the battle that much harder.  I do believe that without you it would be easier for me to throw in the towel and give up.  But I gather strength and courage from YOU my readers, my friends, my cyber family.  Thank you so very much for all you have given.  And for all that I know you will continue to give.

As always if you have any questions, concerns, or comments please feel free to bring them to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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How I Feel for the Week Ending 6.13.14…

Smiling, just like last week I am starting my report around noon. It would appear that I am a creature of habit LOL LOL, which isn’t always a bad thing.  It has been a wet dreary day here in not so sunny Florida during the last 24 hours we have had close to 4 inches of rain. Today our music selections begin with “Bully” by Shinedown, to fully appreciate Shinedown you must listen at 7 or 8.   Staying with a recent trend I feel the week has been a 2.75, not quite as strong as last week’s 2.75, but not enough difference to drop it any lower.

Over the past week I have been extremely careful not to stand over the grill inhaling the wonderful aroma of burgers and marinated chicken cooking, with the smoke being provided by the 80/20 lean beef burgers.

Doctor appointment wise it has been a busy week.  I met with Doc Head Monday and it was as always a productive meeting. Then on Tuesday I met with the Head RN for the Hospice Team that manages my health.  I thought (and it had been implied) that this was the meeting to determine if I were progressing towards end of retirement in a timely enough manner to stay under Hospice. Well it wasn’t really that meeting; the Head Nurse is required to visit each patience within her teams’ care on a periodic basis.  Smiling “she had heard so much about me,” she felt it was time we met.  When will I learn to just shut the f…… up LOL?  All kidding aside it was a very through 1st meeting. She visited with me for over 90 minutes, very engaging (as I have found most of the Hospice folks) and when it was over I asked her if this was in fact the meeting to determine if I were still a candidate for Hospice care.  Her response was that while this had not been the official meeting for such a determination, it was clear that I would be staying with the program.  Sidebar, we have been listening to a variety of hard rock so far, including Van Halen, Stone Temple Pilots, more Shinedown, Nickelback (for my Canadian friends) and Puddle of Mudd. Finally on Thursday I had my normal weekly meeting with the Hospice, this appointment when as expected and all my vitals were drawn from it.

This, like last week and the week before, my general health remains approximately the same. The coughing is about the same, tiredness seems normal this week; SOB better than last week, but I am not standing over a grill LOL.  Sleeping soundly is an issue, but in fairness I have never been a good sleeper, it just seems like in recent months it has gotten more and more erratic, and I am finding I am napping more than ever before in my life, this morning after taking care of the morning rituals and folding the cloths, I looked out the window at the gray ugliness, so I laid down for a couple of hours. 

Let get the vitals out-of-the-way for the week ending 06.13.14

  • INR = 2.3 taken 05.19.14 – next test will be 06.16.14

  • O2 level @ 2.5 LPM = 93 taken moments ago,

  •  Peak Flow = 225 taken moments ago

  • BP = 102/62 taken 06.12.14

  • Heart rate = 107 taken moments ago

  • Temp = 98.6 taken 06.12.14

  • Weight = 267 taken 06.13.14 my weight has been all over the place in recent weeks up or down as much as 6 or 7 pounds any given week.  I check my weight at the same approximate time daily. I talked to the Hospice nurse about this, and one of the long-term impacts of the disease is weight lost, soft smile if you can’t breathe it is difficult to eat.  Ergo you diet a natural unnatural way.

So ends the technical aspect of my “How I Feel This Week” report for the week ending 06.13.14, moving now to the word of the week discussion aspect. This week I have chosen “Therapy” as the word of the week. As I normally do I will start with the dictionary definition for the word.

http://www.merriam-webster.com/dictionary/therapy

ther·a·py  –  noun – the treatment of physical or mental illnesses

Full Definition of THERAPY :  therapeutic treatment especially of bodily, mental, or behavioral disorder

Examples of THERAPY

            1. He is undergoing cancer therapy.

            2. talking over my problem with you has been good therapy.

Origin of THERAPY

New Latin therapia, from Greek therapeia, from therapeuein

First Known Use: circa 1846

Before I started “therapy” I had no feeling about it one way or the other.  There was no negative stigma I ever associated with “therapy” my feelings were and still are simple; if you needed it you needed it.  Kinda like a pill, if you have to take it, take it.  But since I have been it I have found I have very real feelings about therapy.  I could never be a therapist; I would never want to be a therapist. I understand more than ever some folks are deeply troubled; some not so troubled, and still others that are a mixed bag.  My 1st experience with a therapist was an effort on my part to find out about the dying process, especially for a person such as myself who had a terminal disease that slowly killed you.  I had 2 sessions with that therapist, and I truly believed she answered my question within the 1st 20 minutes of our conversation.  Being honest I didn’t bond with her, and one of us had an agenda that didn’t seem to be in my interests.  But I did go back for a second session, same net result, but I left satisfied that I had the answer I sought.

Some 12 months or so after my initial experience, I was troubled, and again sought out therapy.  My Health Coach did the research and kinda sorta recommended Doc Head.  She wouldn’t and couldn’t push me towards a particular Doctor; she just laid out the info.  One of the single biggest aspects of the decision process was that Doc Head’s office was about 7 minutes away if I took my time.  Decision made, appointment made, and the rest is history.  I have been seeing Doc Head for over a year and not one moment has been wasted.  For those who have been following me for any length at all knows I am an open person, and will talk about anything.  But damn was I quick to open up to Doc Head.

I am not sitting here saying everyone needs a therapist, or that everyone needs therapy, but I am saying is that for those of us who do admit to a need, it is great experience.  To be able to vocalize thoughts, and not just let them spin around in your head is worth the price of admission.  To be able to say just about anything you want and not have someone judge you, to be as totally honest as you want and need (as long as you stay honest), to be able to talk about your pains, your disappointments, your needs, your wants, your desires and to be able to do so out loud, so not only does someone else hear them, but you hear those words, those thoughts, those needs, wants, and those desires aloud.  Trust me, they sound a lot different verbalized than they do rolling around in your head.  And as you verbalize there is someone 4 feet away asking you what makes you feel this way or that, they aren’t judging, yes they may be digging, but it has been my experience that sometimes you have to dig to get to an issue.  Smiling, sometimes Doc Head will just sit and knot her head, encouraging me to finish a thought, or come to a conclusion, or realize that what I am yapping about isn’t really the issue at all, but it could be the conversation starter that leads to the issue.  Also I have learned that not all issues are problems and that not all problems come from the issues you present. The best thing about therapy is it allows you to get things off your chest, but be warned sometimes the things you get off your chest find their own replacements.

Also there is joy to be found in therapy, it is the perfect place for me to brag, I love writing my blog. I love the thought that my words may have reached out and helped an individual, I can share stories about folks who have come to me and said “thank you” for this story, or this hambit of information, or how I helped them cope.  And when doing so I don’t need to feel modest, I don’t worry about sounding like a braggart, I even allow my head to swell with pride when I talk about the positive things my blog gives me, and the love I have for my  fellow bloggers.  I can and do talk of the pure joy it is receiving the wonderful positive feedback I have gotten.  Smiling and my therapist doesn’t even look like she is tired of hearing it LOL.

Of course you can say something stupid like your planning on taking someone out, but as soon as you do the Doc will drop a dime on you.  You can talk about a plan to commit suicide, again the Doctor will drop a dime on you and measures will be taken to prevent such actions.  There are laws that require a therapist to advise authorities if you’re planning such actions.  I am sure there are therapists that are trained specifically to deal with situations like these.

Okay I have bent your ear as long and as hard as I can for this post.  As always if you have any questions, concerns, or comments please feel free to bring to my attention, I will answer as completely and honestly as possible. Please take care, Bill

 

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Addendum to HIFftWE 06.06.14…

(HIFftWE = How I Feel for the Week ending)

From time to time I speak about my head and what my spirits are like or mentally how I am feeling.  The last time I really spent any time on it was 05.16.14 and this is what I said “Also you need to understand that I am doing the best I can to keep my head out of my weekly score.  If I were to grade my week mentally I would give it a solid 4.75 out of 5.  The head has been and continues to be great.  Sure there are hiccups, but even healthy folks have hiccups.”

I truly am not going to make it a habit of reporting my mental state during these reports, I admit it is an important component of my overall health, but I am so upbeat.  What I would end up doing a cut and paste each week cause I am too lazy to retype the same info week after week.  But sometimes things happen and your whole perspective changes.  If I were to rate my head this week I would easily score the week 6.5 out of 5.  I was given a very special gift this week. The numbers are just numbers, but the gift was so very special.  One I will cherish.  Oh, by the way, I am not even going to share what the gift is.  But trust me, it is wonderful.  

Folks, I hope you have a wonderful weekend.  Yes I will take questions, but don’t ask about the gift, because I will have to decline.  Take care, Be safe, Bill.

 

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A COPD Video — A good death

As you know my blog is about COPD a disease I suffer from.  Some of those that follow or read my blog from time to time also suffer from the disease or they may know or love someone who does.  This video is for all of us.

I have never made the disease out to be pleasant, I haven’t highlighted any good points because there aren’t any, but I rarely take a negative position.  This is a much watch video.  It isn’t gross, but it isn’t pleasant either. This is 100 percent about reality.

One of the individual’s in the Daily Strength Discussion Group to which I am an active member shared this video.  It is touching, it is moving, and it is in the future for many myself included. It makes some very strong points, and it is something that needs to be shared, talked about, and thought about.

It will take 30 minutes of your time, but it will be a very worthwhile video.  Please consider it.

http://vimeo.com/39258619

As always if you have any questions, thoughts, concerns or comments please feel to ask me.  Please take care, Bill

 

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How I Feel The Week Ending 01/31/14….. Living with COPD

Hello Friday, here comes the weekend and the Super Bowl.  Watching the Super Bowl is an annual event, and I have truly enjoyed many over the years, but I would be lying if I said the commercials weren’t important to me.  So bring on the Commercials and hopefully the game won’t get in the way. 

 

That’s quite enough levity for my post today, not that I won’t sprinkle more in as I pound away on the keyboard.  Let us proceed and get the vitals out-of-the-way.  I have not been in a Doctor’s office in a couple of weeks to check my blood pressure, but I would say because I feel fine that there is no significant change to it today.  My resting heart rate today is 104, and my oxygen concentration is 95 percent again in a resting mode. My weight depending on time of day is maintaining a weight higher than I want, but is tracking downward.

 

This week I have had only one doctor appointment and that was with Doc Head.  I don’t know how one measures progress when the examination of your head and its contents are what is being measured.  Is relief a measurement? Is getting it off your chest a measurement? If you cry or smile are they measurements of progress or lack of progress?  I assume the fact that when I walk out of her office I actually feel better is the true measure.  I have asked her point-blank, if I was crazy (others have thought I was LOL) and she has told me NO, I am not crazy, so for all you doubters out there, I have got a professional opinion, so there! LOL LOL

 

Now on to the heart of the matter about how I feel this week.  I am giving the week a 2.75.  I feel just a bit off-center and have felt this way all week.  The SOB and the physical limitations that come with it has been real bad, and the cough (while somewhat productive), damn just will not subside (I do control it somewhat with meds).   I am not having any of the early signs of and exacerbation or anything I can point at directly and say “Oh, this is why,” and that is a good point. But it is the cumulative total of things going on inside me that makes me rate the week 2.75.   

 

This week’s word is; Infusion Treatments.  I have talked endlessly about my monthly IVIG treatment and have spoken countless times about the post hospitalization IV treatments that are a part of my world. But I don’t believe I have gone into any real detail.  Yes I have whined about being a difficult stick, and that the nurses have had to prod me several times each month to successfully get the needle into my arm to start the infusion.  But to actually talk about it and share the benefits I haven’t. 

 

I have chosen two “book” definitions for Infusion Therapy (which I refer to as Treatments) one from Wikipedia, and the other taken from NHIA (National Home Infusion Association).  I have included the links to both of these definitions for your further use.  Normally I cherry pick the information to a great extent, today not so much.  I do suggest you go to the sites to get further information.

Infusion Therapy (as taken from Wikipedia, the free encyclopedia)

http://en.wikipedia.org/wiki/Infusion_Therapy

In medicine, infusion therapy deals with all aspects of fluid and medication infusion, usually via the intravenous route. A special infusion pump can be used for these purposes.

Treatments — Infusion therapy involves the administration of medication through a needle or catheter. It is prescribed when a patient’s condition cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

Until the 1980s, patients receiving infusion therapy had to remain in an inpatient setting for the duration of their therapy. Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings. For individuals requiring long-term therapy, inpatient care is not only expensive but also prevents the individual from resuming normal lifestyle and work activities.

Infusion Therapy as Taken from NHIA (National Home Infusion Association) http://www.nhia.org/faqs.cfm

What is infusion therapy? —Infusion therapy involves the administration of medication through a needle or catheter.  It is prescribed when a patient’s condition is so severe that it cannot be treated effectively by oral medications. Typically, “infusion therapy” means that a drug is administered intravenously, but the term also may refer to situations where drugs are provided through other non-oral routes, such as intramuscular injections and epidural routes (into the membranes surrounding the spinal cord).

 

“Traditional” prescription drug therapies commonly administered via infusion include antibiotic, antifungal, antiviral, chemotherapy, hydration, pain management and parenteral nutrition.

 

Infusion therapy is also provided to patients for treating a wide assortment of often chronic and sometimes rare diseases for which “specialty” infusion medications are effective.  While some have been available for many years, others are newer drugs and biologics.  Examples include blood factors, corticosteroids, erythropoietin, infliximab, inotropic heart medications, growth hormones, immunoglobulin, natalizumab and many others.

 

What diseases are treated with infusion therapy? — Diseases commonly requiring infusion therapy include infections that are unresponsive to oral antibiotics, cancer and cancer-related pain, dehydration, gastrointestinal diseases or disorders which prevent normal functioning of the gastrointestinal system, and more.  Other conditions treated with specialty infusion therapies may include cancers, congestive heart failure, Crohn’s Disease, hemophilia, immune deficiencies (this is the condition that I fall), multiple sclerosis, rheumatoid arthritis, and more.

By far, the major home infusion therapies are IV antibiotics, prescribed primarily for such diagnoses as cellulitis, sepsis, and osteomyelitis; other diagnoses include urinary tract infections, pneumonia, sinusitis and more.

 

What is specialty infusion therapy? — “Specialty infusion therapy” is a term in use when “specialty” infusion medications are administered.  The distinction, if any, between the meaning of “specialty infusion therapy” and “infusion therapy” is related to the context of their use.  This para can be seen in its entirety on the defined site.

 

Why are infusions performed at home? Until the 1980s, patients receiving infusion therapy had to remain in the inpatient setting for the duration of their therapy.  Heightened emphasis on cost-containment in health care, as well as developments in the clinical administration of the therapy, led to strategies to administer infusion therapy in alternate settings.  This para can be seen in its entirety on the defined site.

 

This concludes the “by the book” technical/medical aspect for the word of the week “Infusion Therapy,” and I will now proceed to give it to you as I see it.

I have been getting Infusion treatments for just at 2 years now.  My being infused on a scheduled basis came about because my Doc Lungs called in Doc Infectious to see what if anything else was going on in my body to make me so susceptible to pneumonia, MRSA and other continuing issues of the my COPD and the fact that I was being hospitalized on a very regular basis, and when I wasn’t in the hospital, I was having exacerbation on an almost regular basis.

 

Through a series of simple blood tests Doc Infectious found that my immune system had gone into semi-retirement.  My immune system was not producing sufficient antibodies in response to exposure to pathogens. As a result, my immune system fails to protect me against common bacterial and viral (and occasionally parasitic and protozoan) infections. The net result was that I got sicker quicker and longer than that of a person with a normal working immune system.  Doc Infectious said this problem (where the immune system does not work at the needed level) is not uncommon, and that it occurs usually as we age.  But it is not limited to older folks at all.  The schedule and dosage depends on the individual, and their tolerance of the medicine.

 

Doc Infectious put me on a Gammagard IVIG treatment every 4 weeks.  Originally the dosage was set at 400 units per treatment, but after several months and no significant increase in the needed antibodies, Doc Infectious increased the dosage to 500 units per treatment.  This has had the desired impact.  Recent blood tests show my antibodies to be at low normal and slowly increasing.  Doc Infectious has advised me that I may be on this treatment schedule the rest of my life, but he has also stated that the treatment itself may jump-start my body, where my body actually begins making the necessary antibodies on its own.  At which time, my dosage and schedule could change to reflect the work of my body.   

 

Now with the Mediport, the entire process is quite simple.  I walk in, sit down, have my vitals taken, then the nurse prepares the site, sticks the needle into the port, flushes the line, runs 5 mins of saline, then attaches me to the 1st of 5 bottles of Gammagard.  In infusion starts a slow rate, and with each 15 increment the speed is increased.  After 4 increases the flow is at maximum and continues until I have all 5 bottles.  I generally start at 9am and the treatment is completed around 2pm.  After all 5 bottles are infused; I get another 5 minute saline flush.  Cleaned up and sent home, total time generally 5 ½ hours. This 5 ½ hour period once a month is a small price to pay for the benefits.

 

This treatment has had a significant impact on my health, especially when the dosage was increased to 500 units a month. Prior to going on the monthly IVIG treatment schedule it would not be uncommon for me to be hospitalized 3 or 4 times a year suffering from pneumonia.  In the last 24 months I have only been hospitalized 5 times, but only twice in the last 12 months.  This represents a significant improvement.  I believe it has also significantly reduced the number of exacerbation I have suffered in the last 2 years.  I am grateful that Doc Lungs called in Doc Infectious.  Together they are a great team. 

 

Thank you for taking the time to work through this.  If you have any comments, thoughts, questions or concerns please ask.  Take care and I hope you have a great weekend.  GO BRONCO’s — Bill —

 

 

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

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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Milton: “The mind is its own place…”

Hunt wrote this months before we became acquainted. She wrote this post before she was diagnosed with COPD. But these words sum up the efforts, the emotions, the anguish, the fears folks with COPD go thru on a daily basis. Hunt realizes the battle she is in, and she seems prepared to fight the damn disease to the very end. We now share war stories, medical tips and any other information we have at our fingertips. I can’t be more proud of her or her efforts, and she’s a good one to have on your side as you wage your own war again COPD. Take care, Bill

Chasing Rabbit Holes

Today, as has been the case for over a week now, I was having trouble breathing. Something about late August, maybe. For a year, I had been good – no sudden difficulties or that incredibly tired feeling – just the effort to breath taking everything I had. The act of eating seeming to be more effort than I had in me. One of the blessings of being unemployed right now is during this episode, I was able to just lay down, sometimes sleeping for three hours at a time. The body repairing itself.

I have this breath test “machine” I can use to monitor how I’m doing. On a scale from zero to 800 – 800 being a really healthy person – on a good day, I come in at 180-220. The pulmonary specialist set the gage on the right to indicate green, yellow and red for danger zones. Green…

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How I Feel Today 01.18.14

Good day folks this is my weekly report for the week ending 01/18/14.  I will rate the week a solid 3.  It has been a good week overall.  Thankfully when I left Tampa to go to Atlanta the temperatures here were close to the temps in Atlanta, and coming back because of a cold snap the temps in the Tampa area were close to those in Atlanta, allowing me to forgo the burden of adapting to massive changes in temperature in short periods of time.  I will talk more about the trip and travelling alone in a bit, but now is the time share as I do my current medical situation.  I really am doing fine.  I have a continual nagging cough in the am and pm, which I will attribute to the Mucinex I take twice daily.  The sole purpose for this medicine is to break up the crap that resides in the bottom of one’s lungs.  The TV commercial for Mucinex is probably one of the best animated shorts that truly represents what this medicine is all about.  It makes you cough that crap up. Those of us with diminished lung capacity truly appreciate having whatever additional space we can acquire in our lungs and coughing this crap out really does have an overall positive impact on your lungs. 

BTW — crap is a medical term for the shit in my lungs. 

I have been sleeping well (all things considered) especially for me.  I have little aches and pains but I am 64 and I have not lived a stellar life, and even if I had, I suspect the aches and pains I have come standard, with the package, and I am okay with it.  I do haves some chest discomfort, but this has been addressed with my Heart Doctor, and he is okay with it, again it seems that lots of folks have some level of discomfort in their chest.  My is extremely brief and happens when I awake in the morning.  I guess I will start to really worry about it the morning I wake up and don’t have it.

Vitals on 01/16/14

Blood Pressure         110/66

Temperature             98.1

Heart Rate                103

O2 Level                   94/95

Last PT/INR              2.1

Weight = to friggin much but less that this time last week

I spent the earlier part of the week in Atlanta Ga.  I drove up on Monday and returned and Wednesday, round trip over 1,100 miles. I travelled alone, stopping as necessary, and functioning as anyone else.  It was easy; the only PIA was all the crap one has to travel with. But having whined about it, if you make a list check and it twice, and pack accordingly, it really isn’t that big a deal to travel alone with COPD.   I guess the single most important thing about it is letting people know you’re doing it and checking in periodically.   Having COPD does not confine you to the Den or Living room.  It doesn’t mandate that the longest trip you can make is to the doctor’s office, it really doesn’t.  It takes a little courage, and a good bit of planning.  And after you do it 2 or 3 times, you stop fretting and get on with your life.  Besides normal packing, the things I took for me for this trip included: a week’s worth of medicine, both my portable concentrator and the one I use in home, my nebulizer and Cpap machine.  I try to pack all medical stuff in one bag, cloths in the other.  When I check into the hotel, I generally get one of the hotel staff to help me get the crap to the room.  Once there I am setup in 10 minutes and then let the visit begin.  I do nebulize before leaving the room, and I do carry my next dose of medicine with me.  Really pretty simple, and the joy of being out and travelling and being independent makes me feel great.  Enough on this subject.

 

This week’s word is M R S A. Over the last couple years I have said that while I was in the hospital with pneumonia, that I was also battling MRSA. I don’t believe I truly defined what MRSA is or the impact it has to the body.  Hopefully this will help those that need a deeper understanding.  I am going to start out with “book” definition of the term. Because I will be talking about MRSA today, I am taking the info from:  The U.S. National Library of Medicine (NLM) the world’s largest medical library. Its electronic services deliver trillions of bytes of data to millions of users every day.

The NLM was founded in 1836 and is part of the National Institutes of Health (NIH) in Bethesda, Maryland.

I have edited the information provided by NLM for the sake of the blog, the complete reference material can be found at this link:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004520/

MRSA

Methicillin-resistant Staphylococcus aureus; Hospital-acquired MRSA (HA-MRSA) MRSA stands for methicillin-resistant Staphylococcus aureus. MRSA is a “staph” germ that does not get better with the first-line antibiotics that usually cure staph infections.  A.D.A.M. When this occurs, the germ is “resistant” to the antibiotic.

Causes, Incidence, and Risk Factors: Most staph germs are spread by skin-to-skin contact (touching). A doctor, nurse, other health care provider, or visitors may have staph germs on their body that can spread to a patient.

Once the staph germ enters the body, it can spread to bones, joints, the blood, or any organ, such as the lungs, heart, or brain.

Serious staph infections are more common in people with a weakened immune system.

MRSA infections can also occur in healthy people who have not recently been in the hospital. Most of these MRSA infections are on the skin or less commonly lung infections.

Symptoms: It is normal for healthy people to have staph on their skin. Many of us do. Most of the time, it does not cause an infection or any symptoms. This is called “colonization” or “being colonized.” Someone who is colonized with MRSA can spread MRSA to other people.

A sign of a staph skin infection is a red, swollen, and painful area on the skin. Pus or other fluids may drain from this area. It may look like a boil. These symptoms are more likely to occur if the skin has been cut or rubbed because this gives the MRSA germ a way to “get in.” Symptoms are also more likely in areas where there is more body hair due to hair follicles.

MRSA infections in patients in health care facilities tend to be severe. These staph infections may be in the bloodstream, heart, lungs, or other organs, urine, or in the area of a recent surgery. Some symptoms of these severe infections are:

  • Chest pain

  • Cough or shortness of breath

  • Fatigue

  • Fever and chills

  • General ill feeling

  • Headache

  • Rash

  • Wounds that do not heal

Signs and tests: Your doctor may order a “culture.” This is a sample from a wound, blood, urine, or sputum (spit). The sample is sent to the lab for testing. This testing can take a few days to finish.

Treatment: Draining a skin infection may be the only treatment needed for a skin MRSA infection that has not spread. A health care provider should do this procedure. Do not try to pop open or drain the infection yourself. Keep any sore or wound covered with a clean bandage.

Severe MRSA infections are becoming harder to treat. Your lab test results will tell the doctor which antibiotic will treat your infection. Your doctor will follow guidelines about which antibiotics to use and look at your personal health history. MRSA infections that are harder to treat are ones in:

  • Lungs or blood

  • People who are already ill or have a weak immune system

You may need to keep taking these antibiotics for a long time, even after you leave the hospital.

Expectations (prognosis): How well a person does depends on the severity of the infection and their overall health. MRSA-related pneumonia and blood infections are associated with high death rates.

Prevention: The best way to prevent the spread of staph is for everyone to keep their hands clean. It is important to wash your hands properly.

  • Health care workers and other hospital staff can prevent staph.

  • Visitors also need to take steps to prevent spreading germs.

If you have surgery planned, tell your health care provider if:

  • You have frequent infections

  • You have had a MRSA infection before

Folks I share this with you because MRSA is a very serious issue.  Earlier in the NFL pre-season, MRSA was discovered in the Tampa Bay Buccaneers practice facility.  One player was infected and out for several weeks, and there were several other incidents across the league. It is becoming more and more common and striking far and wide.  In my case, in the last 2+ years I have spent as much time in the hospital for MRSA related issues as I have for pneumonia.   Normally when I am released from the hospital the pneumonia has become a non-issue, but the MRSA continues, and that is normally why I am on antibiotics for up to 20 days after a hospitalization.   During hospitalization, MRSA just makes everything else about pneumonia worst.  Every symptom you have with pneumonia is doubled or tripled because of the MRSA.  I really don’t believe that MRSA has its’ own set of symptoms, at least so vastly different that a COPD sufferer would be able to say, “Oh! That’s my MRSA acting up.” If you look as the symptoms above you see they would be almost identical to those of a person with COPD.  Another significant aspect of MRSA is that it learns.  It learns the power of the antibiotics you are given and finds ways to make those antibiotics ineffective.  My doctors get me off antibiotics as early as possible in order for their drug of choice therapy to be affective. Also, there are a finite number of available antibiotics to effectively fight MRSA.  For me that’s the worst part, because I have had the opportunity to use most of the available drugs.  I now have MRSA with me 24/7; it has taken up residency in my left lung, and is in remission (for the lack of a better term).  You can be pretty sure that the next time I have pneumonia, the MRSA will act up and become part of the problem. But that’s the thing; it doesn’t have to and may not.  But my doctors always look for it immediately. 

Folks I do hope you find these words and phrases beneficial.  I also hope you have a pleasant day and great weekend.  Smiling another post complete and out in a timely manner.  LOL LOL. Thank you for your continued support, good thoughts, and as always your comments welcomed are encouraged – take care, Bill

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004520/

http://www.nlm.nih.gov/about/index.html

http://www.nih.gov/

 

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Definitions…… and Outlook

I will be adding definitions as I see fit as I write my blog.  Hopefully they will help, if you need me to define something just comment, I will define it as it applies to me.

What Is COPD?…. as defined by the National Heart Lung and Blood Institute

COPD, or chronic obstructive pulmonary (PULL-mun-ary) disease, is a progressive disease that makes it hard to breathe. “Progressive” means the disease gets worse over time.  COPD can cause coughing that produces large amounts of mucus (a slimy substance), wheezing, shortness of breath, chest tightness, and other symptoms.

Cigarette smoking is the leading cause of COPD. Most people who have COPD smoke or used to smoke. Long-term exposure to other lung irritants—such as air pollution, chemical fumes, or dust—also may contribute to COPD. …. This definition blames smoking, but I much prefer how my doctor has defined smoking as an influencer but not the root cause.  While I believe in and trust my Doctor completely, from the research I have done just putting this together would indicate that he grayed up the truth about smoking being a primary cause.  But I still like his definition better.

Exacerbations (ig-zas-er-BAY-shuns) are a part of COPD. I had never heard of term it until the 1st time I was put into the hospital because of one.  Many people with COPD periodically suffer from a marked worsening of their COPD symptoms including (cough, increased mucus production, and shortness of breath). Doctors refer to these as exacerbrations and they can last for a few days or longer and often requires antibiotics, oral steroids, and in some cases, hospitalization.

Emphysema usually refers to a long-term, progressive disease of the lungs that primarily causes shortness of breath.  Subcutaneous emphysema refers to a condition when gas or air is present in the subcutaneous layer of the skin.

In emphysema, the walls between many of the air sacs are damaged. As a result, the air sacs lose their shape and become floppy. This damage also can destroy the walls of the air sacs, leading to fewer and larger air sacs instead of many tiny ones. If this happens, the amount of gas exchange in the lungs is reduced.

In chronic bronchitis, the lining of the airways is constantly irritated and inflamed. This causes the lining to thicken. Lots of thick mucus forms in the airways, making it hard to breathe.

Outlook

COPD is a major cause of disability, and it’s the third leading cause of death in the United States. Currently, millions of people are diagnosed with COPD. Many more people may have the disease and not even know it.

COPD develops slowly. Symptoms often worsen over time and can limit your ability to do routine activities. Severe COPD may prevent you from doing even basic activities like walking, cooking, or taking care of yourself.

Most of the time, COPD is diagnosed in middle-aged or older adults. The disease isn’t passed from person to person—you can’t catch it from someone else.

COPD has no cure yet, and doctors don’t know how to reverse the damage to the airways and lungs. However, treatments and lifestyle changes can help you feel better, stay more active, and slow the progress of the disease.

 
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Posted by on June 25, 2012 in Definitions and Outlook

 
 
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