11-04-10 Thursday Day +7

Status: 8.75/10. Mucositis has progressed. Discomfort on swallowing has increased, and mouth is swollen, but without ulcerations. We’ve changed my oral meds to liquids, and prescribed oxycodone for pain. I’m trying to use it sparingly, but the nurses have suggested there’s no upside in being a hero, especially if it’s preventing me from getting food in (now also all liquids). Otherwise feeling pretty well.

Events: Met my new rounding attending today, who’s the co-director of the transplant program. Also attended a patient support group. Six of the patients on the ward got together to discuss issues and share information. All with similar stories. And all agree on the quality of food!
Lisa is still having symptoms so I haven’t seen her in a while. Ethan was to come up an visit today, but he started sneezing. Unfortunately, ’tis the season.

Comments: Now it’s possible to see how patients can have significant nutritional problems if all they can have is liquids. Trying to get calories in with milkshakes, etc., runs into the relative lactose intolerance anyone develops from inflammation of the GI tract. Some patients require nutritional supplementation intravenously. We’ll see how mine progresses.

Looking forward to Lisa getting well and being around.

Love,
-Bruce

F

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7 Responses to “”

  1. wendy Says:

    ensure and other nutrional supplement may be easier on the GI, ask to talk to the dietician…. which supplement is easier to tolerate..

  2. wendy Says:

    nutritional (can’t type without my glasses on and in the dark)

  3. Lynn Oliver Says:

    Bruce, you have superb communication skills but have utterly failed at communicating the abject misery (understatement) of mucositis. You make it sound like a mere inconvenience. I agree with the nurse–no reason to be a hero! Thinking of you, cheering you from afar, and in awe of you. Sam hopes to see you in a few days. Wish I could too! But wishing you healing mucosa EVERYWHERE even more. Love, Lynn

  4. Henry Miller Says:

    Another vote for Ensure products (http://ensure.com/products). They do contain milk protein but no lactose so they’re OK for lactose intolerance. And at 350 calories per 8 fluid oz., you can get a lot of calories in.

  5. joel steinberg Says:

    Henry Miller is correct. Also, your nurse is very correct. Normal (i.e. non-addicts) patients don’t get addicted to narcotics (yes, they do develop tolerance–but that is something different) very easily. And they wean off very quickly and without much fuss. Just do whatever it takes to get yourself through this rough patch; the drug problems will be a minor afterthought. Joel S.

  6. Ashby Says:

    Don’t be a hero, just be comfortable and get well. Please.

  7. Gail Lehmann Says:

    Your sense of humor is incredible and we are amazed at your stamina and attitude. Ultimately that will be what gets you through this trying time.
    Keep the notes coming and we will respond!
    Love,
    Gail & Mark
    P.S. We agree to try Ensure!

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