Live and Learn

Life in the Intensive Care Unit  is not a picnic.  Bright lights and a constant roar are a way of life.  Of course,  life is the business  of the ICU.  The easy existence in a world of chaos cannot be.  When a patient has a blood clot perched in a precarious place, and the docs determine that the future can be long or very short, every minute counts.  My blood was as thick as spring water as the Heparin flowed into my veins.  What was happening was clear.  Why this was going on became the murky question of the hour.

I introduced the answers into the conversation myself as a light went on in my thick scull.  This threatening situation was my fault.  Instinctively, I knew that.  I am working on a book proposal and writing this blog.  I am spending an enormous amount of time, maybe five or six hours at once, sitting at he computer.  It never occurred to me to stand and take a few steps.

When healthy individuals sit, they move their legs around and change positions with some frequency.  Legs are crossed or extended straight out.   Feet tap or rest on a stool or other object.  When someone with MS or other illness that limits mobility sits, legs become dead weights.  They do not move, sometimes sending a warning signal by going to sleep or pulsating with pins and needles.  I was oblivious.

Now add insult to injury.  My right side, extremities and all, is worthless.  Fine motor skills abandoned ship long ago.  I wrote my last books with my left hand alone.  And I am legally blind, which means I must sit with my face practically touching the screen.  The scene looks ridiculous.  My back aches as I hold that position for long periods of time.  When I finally shift in the chair, my feet do not move.  When my back aches, I do not think of my feet.

I do not think of anything but my sorry prose.  I stay focused and trust my language will grow sharper with endless revisions.  Learning to concentrate is an acquired skill for a writer.  A wandering mind is no friend in the world of words.  I was too busy to entertain the idea that a quiet killer was stalking me.  And I was aiding and abetting the would-be murderer.

The lesson is obvious.  Stand up at least once in every hour.  Move around, and when you sit, try to change position.  It is easy and painless.  This easy act may clear you brain as well as your vein.  I do not begin to know what an individual in a wheelchair does to stave off clots.  I suspect that moving legs, even with hands, will do the trick.

I am convinced that mine was a self-inflicted wound.  Live and learn.

 

30 Responses to Live and Learn

  1. Lori April 7, 2014 at 1:04 pm #

    You are very fortunate – to be given the opportunity to learn and move forward and fix your mistake. Someone is looking out for you!

    • Richard M. Cohen April 7, 2014 at 1:28 pm #

      Maybe. Thanks for your note.

      R.

  2. Carol April 7, 2014 at 2:43 pm #

    I have learned from your mistake. Thank you for the lesson. Sorry you were the one to take the hit. Pulling for you as always.

    • Richard M. Cohen April 7, 2014 at 3:17 pm #

      C-

      Thanks.

      R.

  3. Diane Pansino April 7, 2014 at 3:00 pm #

    Hi Richard,
    Glad you survived. It is a wake-up call. My husband is in a wheelchair and barely can use his arms/hands anymore….at 51. I will be sure to tell his caregiver and now I know myself, to be sure he adjust, etc. in his chair. Thanks for sharing. By doing so, someone else could avoid what you had to endure. Hope your right side comes back.
    Diane

    • Richard M. Cohen April 7, 2014 at 3:19 pm #

      D-

      Thanks. Best to your husband.

      R.

  4. MB April 7, 2014 at 5:54 pm #

    Thanks for the wake up call. It’s so much easier not to move sometimes, but the thought of not moving forever, I.e., death, is not a risk I want to take.

    Glad you’re better. By the way, was this related to the rash at all?

    • Richard M. Cohen April 7, 2014 at 7:52 pm #

      Not related in any way.

      Best,
      R.

  5. JerryD April 7, 2014 at 6:37 pm #

    Pulling for you to recover as much as possible. Live and learn, indeed. Good luck .

    • Richard M. Cohen April 7, 2014 at 7:53 pm #

      Thanks.

      R.

  6. Nancy Cincotta April 7, 2014 at 7:03 pm #

    Just living your life trying to be intellectually viable who would think this could happen, don’t blame yourself. So many lessons to learn in this limited venue. Let’s just be thankful things worked out. Take care, Nancy

    • Richard M. Cohen April 7, 2014 at 7:55 pm #

      N-

      Thanks.

      Best,
      R.

  7. coco April 8, 2014 at 12:58 am #

    Live and learn and ..move on.. now you know what else you need to do.. ..you are a survivor.. don’t beat up on yourself too much.. you’re still on your Journey.. and no matter what happens you are helping others along the way who don’t know how to travel these roads alone.. some of us have to be the educators because there are far too many students.. Namaste’

    • Richard M. Cohen April 8, 2014 at 9:52 am #

      I am more student than educator. But thanks.

      R.

  8. Mark April 8, 2014 at 6:57 am #

    Thank you for passing your experience along. In retrospect, it makes perfect sense. Never would have recognized the risk on my own. Sorry you had to go through it all. But grateful we can learn from you. Very appreciative for sharing and best wishes for recovery.

    • Richard M. Cohen April 8, 2014 at 9:53 am #

      A privilege.

      R.

  9. Beth Waldron April 8, 2014 at 7:46 am #

    Thank you for sharing your experience so publicly. It is an invaluable lesson I hope will touch lives. I am a DVT/PE survivor and director of a blood clot education program at the University of North Carolina at Chapel Hill. Clots are preventable, but you can’t take action to prevent what you don’t first know you are at risk for. Most people are unaware they are at risk for developing blood clots.

    You and I were fortunate that were survived our clotting episode. Unfortunately, 1/3 of people do not. DVT/PE kills more Americans than AIDS and breast cancer combined—yet only 6 percent of people even know what DVT/PE is and how it can be prevented.

    There are many reasons why awareness is low–but in short, while HIV/AIDS receives $29.7 billion in federal funding, DVT/PE receives $0 in dedicated funding, even though it kills more Americans and these deaths are preventable. Some of us are working hard to change this and to get blood clots recognized as the health crisis it really is. I realize you are in a very early stage of your recovery, so I apologize for being so forward at this time. But when you feel up to it, please consider learning more about and supporting this White House petition ( wh.gov/ldZMU ) to make blood clots (DVT/PE) a national health priority. We need 100K signatures by April 28 for the White House to issue a formal response.

    And if you need educational information about treatment options and what to expect in the coming months, please visit http://www.clotconnect.org. We have a comprehensive ‘newly diagnosed’ brochure you find linked to on the home page that answers many common questions.

    Best wishes to you in your recovery. And thank you, quite sincerely, for sharing your story to increase awareness.

    • Richard M. Cohen April 8, 2014 at 10:22 am #

      Beth-

      Thanks for your email. I went to the web site and learned a lot. I would be happy to sign a petition and do anything else to help. I am learning as I go.

      ]Best,
      ]R.

      • Beth Waldron April 8, 2014 at 11:12 am #

        Thank you. We each approach this differently with unique life experiences. Be gentle with yourself, this is a new and unexpected experience for both you and your family/friends. Be proactive. Learn all you can–knowledge is empowering and it helps facilitate the communication with physicians. I will be happy to connect you–or anyone else with clotting concerns–with the appropriate educational information and resources.

        Take care, Beth

  10. Lori April 8, 2014 at 7:16 pm #

    Richard – Are you suffering any less with the skin reaction to the IVIG? Has it settled down at all? Sure hope so!

    Lori

    • Richard M. Cohen April 9, 2014 at 5:41 am #

      Still not clear.

      Best,
      R.

  11. Debbie April 9, 2014 at 4:33 pm #

    Richard,

    I have a wonderful p/t who stretches my legs and repositions me ,to avoid staying immobile for too long.He says any type of
    movement helps.So does elevating your legs and using m/t for increased circulation,if possible.
    He also gave me this advice for those confined to wheelchairs or powerchairs,to stand upright(kitchen sink?),with your chair behind you for support,and the counter to lean on for balance,at least 3x per day.

    Also,thank you for your recent posts,and more importantly,for your continuing story.Your blog should be rewarded for
    being so different;so direct and honest,
    and so literary, in such a shallow world.

    All my best,
    Debbie

    • Richard April 11, 2014 at 10:35 am #

      Debbie-

      Thanks. Good pointers.

      Best,
      R.

  12. Christopher April 10, 2014 at 6:10 am #

    This is quite a selfless act of giving to offer your personal experience like you have in these posts. And to get people to turn focus on their own habits is definitely a bonus. It reminds me of the ‘Alexander technique’ in that the technique is fashioned to direct a person to get in the habit of constantly thinking about his or her position in space, which slowly enables correction of bad posture and related complications.

    You probably shouldn’t be so hard on yourself… even though not common, the drug you were given (intravenous immunoglobulin) is known to cause thrombotic events. It could very easily have been multifactorial and you were the unwitting participant in a hemodynamic perfect storm. But you survived and made lemonade out of lemons in that you are more present and aware of the sinister forces at work in remaining static. I am just a solitary voice, but I believe that is incredibly opportune in light of a severely debilitating neurodegenerative disease that forces almost anyone in its wake into a sedentary lifestyle.

    • Richard April 11, 2014 at 10:37 am #

      I agree. Thanks.

      R.

  13. Dave April 10, 2014 at 1:04 pm #

    Our journey’s are similar, though you’ve been on this road far longer than I. Your blog has been more helpful than you know. Both my wife and I look forward to each post. When you have setbacks, we ache for you and your family. So happy to hear you’ve come through this last episode victoriously.

    • Richard April 11, 2014 at 10:39 am #

      Thanks. Am going to blog about this.

      R.

  14. Kim April 12, 2014 at 6:26 pm #

    Dear Richard,

    I am eagerly following your journey with the stem cell trial and pray that you get the results you desire and deserve. As a fellow MS’er I hope to be a part of this study in the near future! I am also a patient at IMSMP and love the center, for their research, cutting edge treatments and overall care that every member of the staff provides. I’m hoping to remain relapse free for the next 8 months so that I may become a candidate. You are providing us all a front row seat as to what we might get the privilege, to experience for ourselves. Thank you for chronicling your adventure with honesty and humor.
    I’m sorry for your recent setback with the blood clot, but as you said…live and learn. Life is filled with surprises, I hope your next one is a lot more fun!

    Best wishes,
    Kim

  15. Jon Chandonnet April 19, 2014 at 12:58 pm #

    I am sorry to hear of your most recent troubles. Thank you for sharing and being a source of inspiration and hope.

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