2-14-11 Monday Day +110

Happy Valentine’s Day!  The only day of the year dedicated to love.  Shouldn’t there be more of them –  maybe a national holiday?

Status:  Feeling better each week, and despite my previous fears I can tell that I’m going to keep getting better.

Events: Big day at Hopkins – had my central line (Hickman catheter) removed – a milestone in both my clinical care and my psychological outlook!  I feel “disconnected” from the world of the sick and back in the world of the well.  That’s of course tempered with my daily meds, wearing a face mask, and need for lab checks.  My counts looked great today – reds, whites, and platelets keep increasing.

 Before they removed my catheter (“removed” is a euphemism for “yanked”), they had to check my platelet count (to make certain I wouldn’t bleed) and also my coagulation status.  Blood clotting is one of the more complicated if not most complicated process in the body.  On one hand, you want to have blood circulate freely without clotting, but be able to clot instantaneously when needed.  It’s like having a hair-trigger gun ready to fire, but never go off unintentionally.  How does the body do that?

  Normal clotting occurs, for example, when you cut yourself and damage a blood vessel.  The exposed blood vessel wall releases chemical substances that attract circulating platelets and initially plug up the hole in the dike.  The platelets release chemical factors that start what’s known as a “coagulation cascade” of a dozen different factors, each one dependent on the one before it.  It’s as if the loaded gun had the safety on, a trigger lock, and was stored in a combination safe, whose combination was in another locked box, whose key was …  hard to happen accidentally, but if practiced well, you could shoot the gun in seconds.

  The final result of the cascade is to change a soluble substance circulating in the blood called fibrinogen into an insoluble string called fibrin.  These strings form a fish net around the area of trauma trapping more platelets, red cells, and forming a stable clot.  Timely clotting won’t occur unless the cascade is carried off perfectly.  The most well-known example of a clotting defect is hemophilia.  People with the disorder are lacking Factor VIII, a defect more likely to occur in couples with common a genetic heritage (like the inbred Royals of Europe).

   One factor necessary in the cascade is vitamin K.  The blood thinner warfarin (Coumadin) inhibits Vit K and decreases the ability to clot (an important treatment in many conditions), but it requires a delicate hand in getting the right dose and frequent blood-clotting checks.  It’s compounded by the fact that Coumadin may have more drug interactions than any other medication, making it perhaps the most powerful and dangerous drug available.

  Obviously they checked my clotting status before removing my catheter.  The nurse practitioner covered the site with a heart-shaped bandage (hey, a little geeky, but it made my day as did high-fives from everyone on getting the catheter out – a real sign of progress).

  But along with the progress, we’re a still playing whack-a-mole.  My liver enzymes are up, which my oncology team believe to be medication related.  We’ve discontinued my anti-fungal medication and decreased my anti-viral. We have to go back Thursday for a check to see if that was the right call.

Comments:  Overall, I’m getting better – still requiring an occasional nap when I get up early as I did today for Hopkins.  My dysuria had disappeared, for which I’m truly grateful, but the most bothersome problem is still a dry-mouth.  I don’t produce saliva when I eat, which makes many foods inedible.  That combined with dry eyes, and dry skin suggests some lingering GVH.  The GVH team today said just to watch it for now.  We’ll see how it goes.

   We’ll report on Thursday’s visit.  Have a great week.

Love,

-Bruce

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17 Responses to “”

  1. Art Ulene Says:

    Dear Bruce… I wish I could be there to give you a hug. I just want you to know that you are loved by me as much on this day (Valentine’s day) as on any other….. so I hope you are feeling VERY loved today. You have truly opened your heart to us during this entire process, and you now own ours. Priscilla and I send you and Lisa our love……. Art

  2. Laurie Samuels Says:

    Bruce,
    Happy Valentine’s Day to you and Lisa…. life is best when you have someone you love to share it with….and yes, especially with the ups and downs. Today is to be celebrated with the removal of the catheter…another big step in the right direction! Continued good wishes for strength and wellness being sent with lots and lots of love. Laurie

  3. sheldan Says:

    Actually, expressing love shouldn’t be limited to Valentine’s Day. It should be expressed every day 🙂

    I happened to find some links to articles which go further into this:

    http://rabbisimcha.com/blog/2010/11/14/valentine%e2%80%99s-day-hallmark-holiday/

    http://www.aish.com/ci/s/A_Jewish_Valentines_Day.html

    http://www.aish.com/sp/lal/Valentines_Day_Every_Day.html

    Love from Nancy and me,

    Sheldon

  4. Blaine Says:

    Know all too well about the drawbacks of Coumadin! Glad you’re feeling better and the catheter is out.

  5. wendy Says:

    If all could learn about the science of medicine and how our bodies work through the eyes and words of you.. this world might be more appreciative for the miraculuos engineering of our bodies.

    How you see yourself is critical to healing. We all see you as pretty spectacular. Hope you see yourself through our eyes.

  6. Bill Israel and Eileen Breslin Says:

    What a great day to celebrate being untethered, and feeling more like you, Bruce. We continue to appreciate your updates, and wish you continued improvement to the point of feeling completely like your old self. Happy Valentine’s Day!

  7. Donna Hill Howes Says:

    Hi Bruce,
    I echo Art’s sentiment….we don’t need a holiday to love our Bruce each and every day!! Congrats on getting rid of the Hickman cath….and know that the liver enzymes will soon return to normal too. That dry mouth syndrome can be so incredibly bothersome…..hang tight….it will pass in good time….
    Thrilled that each week brings you closer to feeling great again!
    Most of all….love….it’s what sustains us all….
    XOXO
    Donna

  8. Henry Miller Says:

    Bruce,

    Here are some Google hits on “artificial saliva”: http://www.google.com/search?q=%22artificial+saliva%22&rlz=1I7GGLG_en&ie=UTF-8&oe=UTF-8&sourceid=ie7. Some of these products might be helpful to you.

    Henry

  9. joel steinberg Says:

    Dry mouth is very annoying. I haven’t found anything that really helps much. We are glad you have been disconnected from the umbilical. You are truly getting better. Joel and Margaret S.

  10. Rick Davidson Says:

    Excellent work, dumping that tether. Hope you guys had a great Valentine’s Day. Best to Lisa. Can’t wait to see you both on the beach.

  11. Jill Stewart Says:

    this forward progress is so encouraging! I love hearing your updates and good news. Keep it coming. Love, Jill

  12. Esperanza Says:

    hERE’S TO BEING ABLE TO SPIT AGAIN! Love you

  13. Debbie Blum Says:

    Hi Bruce,

    I’m glad you’re doing so well. Dry mouth–I seem to remember my transplant doc and dentist recommending Biotene. I didn’t much care for it, but it might be worth a try. I can’t remember how long it took for my taste and dry mouth to improve, but it was quite a while. Liver enzymes–mine were somewhat elevated for a bit–not sure the reason but my doc stopped my antifungal and they eventually became normal.

    The weather forecast calls for a warm up–enjoy the warmth and smell spring coming. —Debbie

  14. mike magee Says:

    Great news, Bruce! Spring’s on the way!

    Best, Mike

  15. Tom Linden Says:

    Spring weather and being Hickman-free… how good is that! You’re getting better every day. All the best wishes for continued good health, Tom.

  16. Bill Schaffner Says:

    Bruce:

    Looks as though all systems are “go”!
    Now that you’re feeling a little more spunky, I see that the teacher in you has come to the fore once again (as you know, the Latin root of doctor is teacher). The internet is grand – it has saved all your mini-lectures. Let’s put you to work – I continue to think that you could make a great contribution to patient understanding (and doctor, nurse, medical student, etc understanding) if you assembled all your pearls to make them accessible in medical centers across the country. Think on it while you’re waiting for Spring, along with the renewed blooming of who you are, still your familiar self and fresh as a new daisy.

    Cheer,

    Bill

  17. Esperanza Says:

    Wonderful Comment from Bill Schaffner, Like his Suggestion

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