7-13-11 Wednesday  + 8 months

Status:  Dealing with a flare of GVH, mainly mouth, lips, and tongue – negotiating pills, food, blood sugars is more than a full-time job.

Events: At Hopkins yesterday for an endoscopy to investigate my difficulty swallowing.  The day was somewhat complicated by the fact that I could have nothing by mouth after midnight, which made for some fancy dancing in regard to morning blood sugars and meds.  Luckily the procedure was scheduled early but necessitating us leaving at 6 AM to drive to Baltimore.

 After registering, you exchange your clothes for two gowns (one traditional gown – expose your tush with back ties – and another you put on like a jacket to cover the back).  Works well for both etiquette and warmth.  Why doesn’t everyone do it?

 They insert an IV line and use Propofol as anesthesia, which has the advantage of being short-acting (the effects stop in just minutes if you stop the medication), but still had 4 people watching me, and hooked me up to a monitor for blood pressure, pulse, blood oxygen levels, and gave me nasal oxygen. [None of which were available to a more famous person given Propofol].

 Knowing about my blood sugars they took a fingerstick beforehand, and even coated the mouthpiece you wear (like a snorkel mouthpiece) with novocaine gel because of my chapped lips.  The mouthpiece is really there to prevent you from biting through the expensive fiber-optic endoscope.

 As I expected, they found a stricture (narrowing) of the esophagus about a third of the way down.  The endoscopist, a professional with a great bedside manner (she did a previous procedure on me for GI bleeding), said she couldn’t even get the endoscope through it.  She used a balloon to expand the opening, and now swallowing is much easier.  If I have more trouble it’s easy to do it again.

 Stayed on a liquid diet the rest of the day, still navigating food and blood sugar seas, and now moving on to soft foods. The dilation is a big help when taking the big pills that populate my 28 tablets and capsules daily.

Comments: Next visit on Monday for the 5th of 6 post-BMT lumbar punctures.  Hope to be feeling better by then, and hope you enjoy a cooler weekend.

Love,

-Bruce

 

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5 Responses to “”

  1. Bill Israel Says:

    Geeez, Bruce. You continue to be an example for the rest of us, navigating all the rapids. Good to hear you’re getting good physician help, in spite of it being July. And I’ll never think of Michael Jackson in quite the same way again! Best wishes from your fans in San Antonio — Bill and Eileen

  2. judy moss Says:

    Oy, Bruce. We HATE what you are still going through but so thankful that you are able to enjoy each day with your family. We continue to keep you in our thoughts and prayers.
    Love, Judy and Larry

  3. Bill Schaffner Says:

    Bruce:

    Gulp! The vivid descript of your dysphagia and esophageal dilatation reminds us all that the simple things we take for granted ain’t so simple after all.

    Your recent reminiscence of residency days brought on a wave of nostalgia as well as similar anecdotes of the medical learning experience. Here’s one in which I’m not featured. The Vandy resident and intern will go unnamed.

    The patient, a middle-aged man, had bilateral pleural effusions. Diagnosis remained elusive. It was decided to tap his effusion and do a pleural biopsy. Heck, if they were going to do one, let’s do both they decided. Simultaneously! Cooperative, the patient sat up in a chair turned backwards, his arms resting on the back of the chair. The intern was on one side, the resident on the other. The procedures proceeded uneventfully (thank heaven, no bilateral pneumothorax!)

    The pathology report arrived two days later. One specimen: non-specific inflammation. The other: normal small bowel mucosa.

    They call it learning by doing…..

    Cheer,

    Bill

  4. wendy Says:

    There’s not a day that I spend with my dialysis patients that I don’t think, there for the grace of God go I.

    And there’s not a day that does by that I don’t think about you..and think- there for grace of God go a lot of us.

    Humbling for all of us to have your reminders of the value of good health, the wonders of medical treatments and the courage it takes to push through all that is necessary to get well and back to a normal life.

    Great lessons! Great teacher! And great patient!

  5. Marcia & Wilson Russell Says:

    Thinking of you & Lisa & family! Much Love, Marcia, Wilson, Virginia, Stuart, & Marley Russell

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