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How I Feel Today 06.07.13 and a side rant on SOB

07 Jun

Good afternoon forks, I hope you have had a pleasant week and have plans to occupy your weekend to the fullest.  For me it’s off to a dance recital, I believe this is my 1st of these events, but I know it won’t be the last.  My granddaughter will be staring and I will be paying close attention.

On my scale it has been a 3 kinda week, no significant improvements, but more importantly no relapses, no back sliding, this alone makes it a good week.  Results from last Friday’s blood work are very good.  My white blood count is in the normal range.  And all other indicators they watch are within normal acceptable.  So these are all positive signs.  Also the picc line was pulled today.  I have been taking Cefepime 2 Gm via IV every eight hours for the last 21 days, clearly it has accomplished its’ mission.  I also have been taking Colistimethate 75mg every 8 hours (via nebulizer) to combat the Pseudomonas that has taken up residence in my lungs.  The regiment seems to be controlling the Pseudomonas and I will continue this until June 18.  I will stop taking this drug until July 5, at which time I will start again and take through the cruise.  It is hoped by myself and the Doctor that this will allow me the greatest protection while on the cruise. The cruise sails in 43 days, the countdown has begun!!! I will also be prescribed an antibiotic to take with me just in case I feel something coming on.  This seems like a logical plan, and gives me a great deal of hope that I should be fine during the cruise. If it works I am all for it.  The only other number that is significant at all to me was my INR, it was checked Monday and found to be 2.9 (barely inside therapeutic range) I am to continue current dosage and it will be rechecked on this coming Monday.

Today I would like to spend a moment or six talking about Shortness of Breath (SOB).  For those of you who don’t suffer from SOB I would appreciate a moment of your time to do a little experiment.  A therapist shared this with me a couple years ago.  It’s a demonstration she uses when counseling families of patients who suffers from the likes of: COPD, asthma, chronic bronchitis, respiratory tract diseases or Emphysema. Take a regular straw like you get at McDonalds and cut it in half. Insert one half into each nostril of your nose, close your mouth and breathe through the straw. Take normal breaths, walk across the room a couple times, bend over to pick something up, tie your shoes, or stand on your tippy toes to put something away.  That gives you a bit of the feeling of what your loved one is going thru 24/7.  But that’s just a bit.  Now take a coffee stirrer, cut that in half and do the same thing.  Now you have some idea of how their day is 60 minutes an hour, 24 hours a day, 7 days a week and 365 days a year. And it never gets any better. That’s how it is when you’re in the advance stages of these diseases.   The therapist when on to tell me that she could stand in front of the group and watch the light bulbs go on as spouses, parents and children alike realized what is happening to their loved one.  Maybe your light bulb just when on?

Last June I started this blog, below is one of my very first posts:

Gasping for breath….. June 21, 2012

The most difficult aspect of dealing with COPD for me is when I gasp for breath.  For no apparent reason, I lose my ability to breath and I gasp.  Sometimes in only lasts for a second or 2, other times 3 or 4.  It is very very scary, and it fortifies my feeling of helplessness.  Thoughts of is this how it will end when the time comes go thru my mind…..

At the time I wrote this I was only suffering a moderate shortness of breath.  Since this post I have moved on to the next level of SOB.  Here is a clinical definition of SOB:

The American Thoracic Society defines dyspnea as: “A subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity.” Other definitions describe it as “difficulty in breathing”, “disordered or inadequate breathing”, “uncomfortable awareness of breathing”, and as the experience of “breathlessness” (which may be either acute or chronic).

Dyspnea is distinct from labored breathing, which is a common physical presentation of respiratory distress.

As many of you know I take part in a discussion group at http://www.dailystrength.org/c/COPD-Emphysema/forum .  This group is made up of primarily folks that suffer from COPD or Emphysema.  We are blessed with many talented and well-informed smart folks who suffer from these diseases and have used their time in a very constructive manner learning and sharing about the disease.  We are also blessed with having many loved ones join the group seeking advice or counsel in how to deal with their loved one.  One topic this is always being addressed is SOB.  We talk about the many ways it comes on, such as; as we eat, or go to the bathroom, simple walks across a room, tying one’s shoes, the things that cause SOB are too numerous to list. Many things folks do without thinking cause us great discomfort. We talk about how it impacts us, what we have to do to get around it, what if any medicines work for individuals, or home cures.  We talk about exercise and how far we can push ourselves, and we talk about how we are sometimes embarrassed by our SOB.  We also address the fear that comes with not being able to catch a breath, or how some of us hide away, trying to put ourselves in a position where we are not captured by SOB, only to find that even sometimes when we are resting quietly for no apparent reason we are suddenly in the throes of SOB. Sometimes it comes on so unexpectedly, you can’t emotionally or physically prepare.  There are many aspects of COPD and Emphysema that as a patient you can prepare for, but SOB isn’t one.

When you address your doctor about your concerns regarding SOB, and after all the usual suspects are put to bed i.e.; congestive heart failure, Anaemia, Acute coronary syndrome, acute myocardial infarction, and a list of other really scary things he looks you in the eye and shrugs.  He shrugs because he or she has done all they can, SOB comes with the disease, if they could cure the disease the SOB would go away as well.  And no matter what, there is no way to prepare for SOB.  You can’t bank breath.

All of today’s rant is about awareness.  So both the informed and the uninformed can come to a better understanding.  I have talked about SOB in many of my prior posts and it has been and will be a part of my weekly posts regarding my health at that moment in time.

Well folks I hope you have a pleasant day, thank you for your continued good thoughts and kind words of encouragement. As always your comments are encouraged and welcomed. — Bill

 
 

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15 responses to “How I Feel Today 06.07.13 and a side rant on SOB

  1. The Persecution of Mildred Dunlap

    June 7, 2013 at 8:31 pm

    Your rant has been effectively and efficiently ranted to in achieving an extremely well written piece that will certainly raise awareness in the reader. It did for me–you can’t bank breath, one of the most powerful things I’ve read. Truth be told it did. Hope you enjoy the recital, certainly smiling thinking of you there. And, you have a great weekend as well, my friend. Paulette

     
    • FlaHam

      June 8, 2013 at 10:27 am

      Paulette, The original intent of my blog was to talk about COPD and the impact it had on me and those around me. It was also created to raise awareness to those who aren’t subjected to the disease on a daily basis. So with that in mind from time to time I use my blog to stand on my soap box. Without question it gives me great satisfaction when I realized I may have caused a light bulb moment. Thank you. I am so looking forward to the recital, I don’t have any expectations or fore knowledge about what to expect. But I am sure at some point laughing will be involved. Please take care and have a great weekend. — Bill

       
      • The Persecution of Mildred Dunlap

        June 8, 2013 at 10:58 am

        You really DO help me a lot. Chronic illness, living with it, can be such a bummer, yet attitude changes so much. I think it’s the only thing that deeps me from falling prey to depression, which thankfully has not been a problem for me with mine. Your attitude, the refreshing way you communicate, the way to just get on with it, in the face of… I could say I admire it, but I bet I know how you’d respond to that so let me say this, it helps me, Bill. Thank you. Can envision you smiling watching your grandchild dancing. 🙂

         
        • FlaHam

          June 8, 2013 at 11:16 am

          Paulette, Your getting so good at reading me, not only my words but me. When I started my blog I promised myself it would never be a pity party, and for the most part I have kept my word. Responses like yours and many of the others have help provide me strength and a willingness to continue. If my words ease the burden of one individual then everyone of the words I have written are worth while. Please take care, we will talk next week I am sure. — Bill

           
  2. Laurel

    June 7, 2013 at 8:54 pm

    How special-your granddaughter’s recital! Enjoy! My daughter had hers last weekend. I never tire of watching her dance:) as I am sure you can relate.

    I’m glad that your levels are ok and your are planning for and lookin forward to your cruise- lovely!

    Thank you for sharing about the straw experiment. My grandmother, like a mom to me, suffered from asthma as did her own mother- quite advanced and then Emphysema. I watched and listened to her struggle daily and tried to help wherever I could. We were very close;)
    Glad to see you writing and ranting Bill;)
    Lola

     
    • FlaHam

      June 8, 2013 at 10:23 am

      Laurel, Soft smile, my heart goes out to you watching and caring for your grandmother. I know it was extremely stressful knowing she was ill and knowing there wasn’t anything you could do except keep her comfortable. That my sweet lady is very special, very caring and your grandma was fortunate to have you there. I do love my granddaughter without question, and she has me so wrapped around her finger LOL LOL and I don’t mind. This will be the 1st recital, so I am looking forward to it. Take care and have a wonderful weekend. — Bill

       
  3. Chatter Master

    June 7, 2013 at 9:41 pm

    Enjoy the recital Bill.

    I have to admit that while reading this I found myself holding my breath, like I was trying to feel your pain. Though I know that I wasn’t really feeling anything you feel. When you describe the straw and coffee stirrer …. it truly did light that bulb.

    I’m glad there is a plan for your cruise. It sounds like you and doctor are making sure you’re prepared. And ready to sail! 🙂

     
    • FlaHam

      June 8, 2013 at 10:18 am

      Colleen, Thank you for your continued support and comments. The action as described by the therapist is the closest I have been able to find that gives a non-sufferer some idea what someone with a serious respiratory tract disease feels on a continuing basis. Being honest I am glad it had that impact on you, and that your light bulb came on. Please take care, Bill

       
  4. gita4elamats

    June 8, 2013 at 1:11 am

    Informative ‘rant’, thanks, Bill. 🙂

     
    • FlaHam

      June 8, 2013 at 10:11 am

      Ela, Your most welcome, my blog was created with the intent to talk about my illness and to promote awareness. Over the past year I have branched out making it a blog about me, my life and my stories. But from time to time I return to the roots of the blog and write about COPD, its’ impact and my feeling regarding it. If it helps anyone understand a tiny bit better, I feel my efforts are worth while, and it has. Thank you for taking the time to read my posts, and your supportive comments, please take care — Bill

       
  5. jmgoyder

    June 8, 2013 at 6:01 am

    Hell.

     
    • FlaHam

      June 8, 2013 at 10:08 am

      Julie, It’s only hell until you get used to it, you learn to adapt and you learn to accept your limitations. I make the best of each day. Yes it takes longer, yes I get tired real quite, and yes I am uncomfortable from time to time, but I haven’t given up or in to the disease. Just like how you haven’t given in to what has befallen your sweet Ants. We do what we can, and we always try to smile. Please take care sweet lady, thank you for all you have given. Bill

       
  6. Wanda

    June 9, 2013 at 2:36 pm

    Bill, you are certainly doing your fair share of informing non-afflicted of the repercussions of COPD. You’ve done a great job with your blog–and I certainly think you are achieving your objective. As for the straw experiment, I have to admit I haven’t been brave enough to do it…

     
    • FlaHam

      June 9, 2013 at 2:47 pm

      Wanda, I don’t believe you need to. You are so sensitive to my disease and you have had the horrible honor of watching my decline. You are like family, and know what I go thru. I have made a concentrated effort over the last year to increase awareness of COPD and the other diseases that rob you of your breath. I know from the comments I have received that I have reached some folks, and that makes it all worth while. While more and more of my writing are stories for Cari to enjoy in the years to come. I still go back to the roots of the blog to try and make a point. Thank you so much for your constant support and caring. Take care, Bill

       

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