3-21-11 Monday  + 4  3/4 months

Status:  It’s been a tough 2-3 weeks, loss of appetite, dry mouth, skin and mouth lesions – all the result of graft vs. host disease.

Events: At Hopkins for my weekly checkup and talk with my lead oncologist.  First question I asked is what the bronchoscopy showed.  He held up his hand, thumbing touching his other four fingers in the classic “zero” sign.  Nada. Nothing.  The bronchial-alveolar lavage (squirt water down and suck it back up) didn’t provide any fungi or even markers for fungi, no viruses, no bacteria.  Zilch.  Biopsy just showed some inflammation but nothing specific. 

   Although you’d like to find something and solve the puzzle, finding any of the above things wouldn’t be good, so this was actually welcome news.  First, the treatment for this non-specific pneumonia is steroids (prednisone) to tamp down the inflammation, and second prednisone is the treatment of choice for chronic GVH.  So, we may be able to kill two birds with one corticosterone.

   I’m starting on low-dose prednisone, which will continue for 8-12 weeks and no doubt stimulate my appetite, clear up my skin and mouth lesions, and perhaps clear up my lungs.  During that time they’ll be checking my pulmonary function tests and chest x-rays to make sure we’re headed in the right direction.  I’m still on antibiotics, anti-fungals, and anti-virals to cover me for the immune suppression that comes along with steroids.

  Lisa had to make out an Excel spreadsheet for the day detailing times for medications, mouth care, eye care, skin care.  In between, I have to find time to eat, exercise.  As my oncologist said today, “That’s your full-time job.”  

Comments:  Electronic medical records make it possible for my doctors, nurses, and consultants to see what’s going on with me, and undoubtedly will contribute greatly to my medical care.  But it comes with a cost.  That cost is security.  My doctor’s name is J. William Smith (not his real name) and he goes by Bill Smith.  A summary of my medical findings, x-rays, bronchoscopy results, etc. go to Dr. Bill Smith.  But Hopkins electronic records database contain 3 Dr. Bill Smiths, one in Laurel, Maryland, and another in Pennsylvania.  Apparently they’ve been getting strange medical records on a patient they’ve never heard of, for some time.  Of course, if I’m ever in Laurel, they’ll have all my stuff.

  Next visit, next Monday.  Hopefully I can report I’m feeling better.

 Love,

-Bruce

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12 Responses to “”

  1. Art Ulene Says:

    I just wish I could wave a wand and make things better for you. Just know that we are pulling for some quick relief for you. Love, Art

  2. Bill Israel Says:

    Thanks for the good news on what the bronchoscopy showed, Bruce. I, too, hope the juggling of medication helps you start to feel better. Damned complicated, all this. But you do sound headed, still, in the right direction, for which I’m grateful. Big hugs to you, Lisa, and the kids. -Bill

  3. joel steinberg Says:

    Steroids–good for what ails you. When I was working for Kaiser I would get lots of mail, labwork, X-ray reports. etc. intended for a Joel Steinberg, MD (Nephrologist) at the Stockton Facility. He would get stuff addressed to Joel Steinberg MD ( Neurosurgery) Redwood City. We both found it both annoying and amusing, but were never able to get it totally sorted out. We hope your problem gets sorted out satisfactorily. Joel and Margaret S.

  4. Margot Says:

    Bruce, I am beginning to feel like I am watching a marathon of “House” – “I am a fan, but do not wish it on my friends. Lert’s hope this next potion does the trick! I had no idea how complicated this process could be! Let alone sharing your records around the mid-Atlantic! Wishing you the best and fastest!

  5. Andrea Tutle Says:

    antibiotics, anti-fungals, and anti-virals and now anti inflammatories, all designed to make sure you do not become ant-matter. Which is great!! (because you do matter to so many of us)

  6. Claire Broome Says:

    a good cautionary tale for those of us who have been pushing EHR’s….But my Pollyannaish take is–great that you’re worrying about that compared to various other possible targets…

    Sounds like we won’t see you at the EIS 60th, however–Kathy, Art and I will just have to raise numerous toasts and tell stories….

  7. Debbie Blum Says:

    Hi Bruce,

    I haven’t written in for awhile, but I have been following your blogs and enjoying all the philosophical bits as well as news of your progress. Lots of ups and downs, but not unexpected, so hang in there. I took a breath of relief at the news of no pulmonary fungal infection–good news indeed. I don’t know how many meds you are on, but I couldn’t keep track of mine, so I finally bought one of those weekly pill organizers (which I am still using by the way).
    Rest up and think thoughts of spring and renewal–Debbie

  8. Henry Miller Says:

    Years ago, a New York food and drug lawyer with a common name — Joel Goldman, or something like that — told me that he kept getting phone calls intended for a lawyer with the same name who often represented organized crime figures. Frequently, he’d get phone calls from guys who would start to tell him that the FBI had just arrived with a warrant but didn’t know about his safe-deposit box, etc., so he’d quickly cut them off and say, “Oh, you want Joel Goldman the mob lawyer; let me give you his number.”

    Sounds as though docs should have a unique identifier — maybe their DEA number?

    Hang in there. Remember that the GVH has probably obliterated any remaining leukemic cells.

  9. Chaya Miriam Says:

    It’s always so good hearing your voice. Sweetie, keep on keeping on and, may that prednisone make you feel so much better! Love you!

  10. penelope douglas Says:

    Hey Bruce,
    You’re fighting the battle…and winning the war!!! Hang in there!!! Seems like that prednisone should make you feel a lot better soon!!! Hope to hear good news in a short while!

  11. Gail Lehmann Says:

    Bruce, sorry I haven’t written in a couple weeks. I won’t tell you where we were because is it near one of your favorite “sunny” places and it might make you a bit jealous. Hopefully you will be well enough to visit the Caribbean next winter!
    Your blog continues to educate and amaze us and we appreciate you being so candid about the ups and downs of your journey to wellness.
    Mark worked for a medical company in the 1980’s & 1990’s that were one of the leading designers and developers of scopes that are now used routinely by doctors to “see” inside our bodies and “fix” what they can without invasive surgery.
    We all have fewer incisions and scars than we would have had only 20 years ago.
    Keep up the fight!
    Gail

  12. Gail Lehmann Says:

    Good News! Getting into shape and continuing to get your strength back hopefully will make you feel much better. And SPRING is almost here!
    Love,
    Gail

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