5-16-10

I appreciate all the comments while I was feeling bad.  I also want to thank Lisa for keeping up the blog while I wasn’t up to it.   And thanks to Terry for taking charge of Rachel and Ethan today.  He came all the way from Memphis to help out. 

Status:  7.5/10.  A lousy morning, started off with an anti-fungal drug for a fever I spiked last night.  The drug, called Ambisone, caused severe fever and chills, which had to be treated with Demerol.  Left me worn out and fatigued.  Then they had to give me platelets in preparation for another LP tomorrow.  I have lost almost all sense of taste.  Everything seems washed out, even water has that bland non-minerally flavor.   It makes it difficult to eat or drink anything.

Events:  They had originally planned to give me my anti-fungal medication late last night, which would have required four hours of infusion with frequent vital signs from 1AM until 3AM.  If there was a reaction to the drug, it would have occurred in the middle of the night, not a real good time to be dealing with immediate medical care.  I convinced them to do it in the morning instead.  Their idea of morning was 5:30AM, which would meant the entire scenario would take place in the middle of a shift change; probably the worst time to be dealing with a complicated medical reaction.  I convinced them to do it at 7:30AM instead.   Finally got over the side effects of the anti-fungal medication and the platelets about 1PM, leaving 3 or 4 hours to doze off to recover.    

Comments:  The inefficiency and poor human planning in a hospital still astounds me.  Most of the incidents and accidents in the health care system are not due to ill-intention but inattention.  Communication skills among the different health care professionals are poor and almost totally lacking.  If I weren’t on top of my case God knows what would happen to me.  A lone, lay person doesn’t stand a chance of getting out uninjured.  Before I received my platelets the nurse came in with my usual preparatory medicines, Tylenol and Benadryl.  I said, “You mean Tylenol and Zantac.”  She said, “No, Tylenol and Benadryl.”  I said, “I don’t take Benadryl.”  She said, “That’s what was ordered.”  We were now having an argument in the dark about which medicines I should be taking.

I told her I was allergic to Benadryl (an ounce of dishonestly saves a ton of explanation).  If I were delirious or somewhat impaired due to my drugs, sleep depravation, or other medical handicap, I wouldn’t have a chance. 

Tomorrow I’m scheduled for another anti-fungal infusion (which I am told will continue until my white cell count comes up), and then followed by another LP in the afternoon.  These last four days have been trying in a number of different ways.  I hope there is some daylight ahead. 

Love

-Bruce

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27 Responses to “”

  1. Judy Freedman Says:

    Thinking of you SO MUCH and wishing you much BRIGHTER days ahead!
    Love,
    Judy

  2. Nancy Bandell Says:

    My Dear Bruce,

    Your stories about medical inefficiency and poor human planning send me directly to the cookie, candy, anything sweet cabinet I have come to rely on when I am in need of comfort. You must get well soon and write a hospital survival guide for the lone, lay person. I have a personal horror story to tell you when the time is right. I love you, I love your blogs, I hate it when you are not feeling well. Off to find some chocolate. You, Lisa, Rachel and Ethan are in my thoughts every day ….. I love you guys! Nancy

  3. Judi Golding-Baker Says:

    OMG, on top of everything you’re dealing with…nighttime debates with the staff over your meds is just unbelievable. I hope dear Bruce you get a bit of rest tonight and get through the LP as best you can.

    Sending you positive thoughts and lots of love

    Judi

  4. joel steinberg Says:

    Your stories give me the willies. And, yet, these incidents are way too common. All med changes should be entered on the medical record (computerized) immediately and thenceforth guide all future actions. But in practical terms, a little white lie is just as effective. Hang tough. Joel S.

  5. winnie Says:

    we all hope this works and you the blue skies once more.
    Lisa you are wonderfull and brave.
    with love winnie

  6. Donna Hill Howes Says:

    These dark days will pass and, yes, the sun will come out tomorrow….
    Sending you prayers for strength, peace, rest, and most of all love. You are so loved, and by so many, dear friends…
    Donna

  7. Judy and Larry Says:

    Bruce
    We are so sorry that the past few days have been so difficult and painful for you. We are happy that Terry is there to help out. After what he has gone through physically, he certainly knows what being a patient is all about and how important it is to help others in need. We hope that the mint candies he brought are helpful to you.
    We continue to hope and pray that your days ahead improve and are pain free.
    Love, Judy and Larry

  8. Hopie Says:

    Love, good vibes, and so much care and concern from me. I am not happy about what’s gong on with you these past few days, wish I could fix some of those bad boo boos they are putting you through.
    Love you so much!
    your Mom

  9. Lewis Lefkowitz Says:

    Paging Dr. Gawande

  10. Amy and Blake Says:

    Dear Bruce,

    We think about you, Lisa, and the children every day. Amy and I would like to come down and take out Rachel and Ethan. We know that you have the strength, fortitude, will power and strong internal constitution to defeat this and we are hear to help in any way possible.

    Love,

    Amy and Blake

  11. Sharon McDonnell Says:

    Hello,
    Your stories of the many little ways that hospitals seem hell-bent on managing you into irritation and perhaps even greater illness leads me to submit a few pictures. You can use these to aid communication or as avatars.

    Check out the link below where I have made a little collection for you.

    http://www.blogger.com/post-create.g?blogID=6827719350736352533

    Best
    Sharon

  12. Sharon McDonnell Says:

    Whooops ….Hey sorry I need to amend the link–instead use this:

    http://gaybumgarnerimages.blogspot.com/2010/05/health-through-imagery-pictures-to-aid.html

    Hope you enjoy them.
    Best
    Sharon

  13. Wally Schlech Says:

    Keep on truckin’ pal! The lipid product probably better than the deoxycholate Ampho B but we’re using a lot of voriconazole for the same indication. You’re gonna feel better as soon as those PMNs come back.
    Mary and I still praying for a rapid recovery for you – just back from seeing Jane get her MLS from Simmons in Beantown!
    xxxooo

  14. Mike magee Says:

    Hang in there, Bruce! Thinking of you every day.
    Best, Mike

  15. Kate Latimer Says:

    Bruce – We were glad to have a chance to meet Terry yesterday on account of the baseball party at our house, and we had a fun time with Ethan and gang. I didn’t know Terry was a baseball guy, but I bet he’s never heard of the baseball move that Ethan invented (and perfected) at Norwood’s season-ending thrashing of JDS — be sure to have Ethan demonstrate his walking-slide-into-home maneuver. Hey, he scored a run so I’ll assume it’s all part of that winner’s instinct he has inherited from you.
    Good thoughts and wishes for you to have a better day today.
    Best,
    Kate

  16. Ashby Says:

    Dear Bruce,

    I’m still on my Doors kick and spent some time this weekend getting reacquainted with “L.A. Woman,” their last album. That’s the one with “Riders on the Storm.” Into this house we’re born. Into this world we’re thrown. But, and this is not in the song mind you, we are not alone. Pulling and praying for you all the way.

  17. Penelope Douglas Says:

    Hey Bruce,

    The sheer ridiculousness of arguing with a patient in the middle of the night about whether he should be given Bendadryl (what was “ordered”) or Zantac (what the patient prefers)blows me away. What’s really sad is that you had to lie to the person to stop the argument and get what you wanted…and you’re an MD! Amazing. But you know what Bruce…its that strength inside you that says: “Look dammit, this is NOT what was “ordered” for me and I’m not going to just lie here and take this medicine to make your life more convenient!” that’s going to get you through this.
    Your blog is being followed in the medical media…I’m sure there are going to be some changes in the medical care there simply because of what you’ve written. That thought may not be enough to make the food taste any better…but think of all the good stuff you’ll be able to eat when you’re done with all this.
    Good thoughts, best wishes and fervent prayers are all coming your way from me and the rest of the ITV gang.

  18. Hopie Says:

    Thought of all the tough things you went thru and never saw you cry.–Bee sting on bottom of bareoot, (was it intentional?)
    Almost cut off finger spinning bike tire upside down and backward.
    Too many peanuts at hunt, thought it was appendix, Dr. Connell solved that in time.
    Rolling down hill at camp hit a stump Crushed cheekbone and Sholder break.
    Cut forehead to the bone, diving for beds in race with Terry, you said I moved the fruniture, which I did frequently, I admit.
    Subdural hematoma on head, jumping off cleaning truck, Connell fixed that too & I fainted the first and last time in my life.
    Dr. Picaza fixed your lL4/L5 before your internship, and now they are messing with it again.
    And last , before you moved away permanently, recoverying here from Mono while still at Vanderbilt.
    So now you can cry if you want too. I do cry for you almost every day.
    Very lovingly, Mom

  19. Eileen Breslin Says:

    Dear Bruce,
    How it saddens me that the health care delivery system is not- this blog should be required reading for all students in every profession. The absurdity of arguing with the nurse. Your insight and tenacity are remarkable. But, rest is the first order of business.
    We were in Phx fixing up the place for visitors. We spoke that when you were ready, Lisa and you and the kids could enjoy the sun, the birds in in the backyard and the peacefulness there.
    You are a remarkable spirit —know we send love and light and healing thoughts everyday. Eileen

  20. Greta & Michael Says:

    Sending you much love and healing thoughts every moment.
    love,
    Michael & Greta

  21. Peggie Neill Says:

    Bruce –
    Your feeling poorly touches all of us, makes us wish we could protect your “Blind Side” like Michael Oher. It also spurs many of us to turn our responses into prayers for sleep, for you to feel supported, for you to know that we are pushing and pulling for you every hour of every day.

    Yes, I see a lot of the same things you see in the hospital. And totally agree that it just doesn’t have to be this way. It’s maddening and frustrating and sometimes it feels like Sisyphus to try to get up momentum for change in the hospital environment. We’ve got to shift the emphasis to a more patient-centered one that pays more attention to a person’s basic humanity.

    Each day feeling poorly, is one less day of this and one day closer to those pmns coming up. You and all your family, especially Lisa, are ever in my prayers.
    Love you, Bruce.
    Peggie

  22. Craig May Says:

    Hang in there, Doc. You remain steadfast in my prayers and so very many others. I’ve been down the road of inpatient allied “hell” professionals myself and can commiserate at least on that level.

    Looking forward to playing gold with you this summer!

    Craig

  23. Craig May Says:

    Golf, not gold.

  24. Margot Mahoney Says:

    Love the idea of your writing a hospital survival guide for the lone, lay patient. Just another thing to look forward to when you get out of there! And to think it’s the best hospital for miles around. What must the others be like?!

    Keep up your strength so you can keep up your fight on all fronts – even with the nurses! ( How absurd to even have to write that!) So keep eating what you can and just keep imagining it’s…. an edible marine crustacean with large pincers that turns bright red when properly prepared! With love, Margot and David

  25. Tom Toftey Says:

    Okay — I’ve just caught up on your blog, Bruce, after being out of town last week and hosting our granddaughters over the weekend. I’m sorry you’ve had some tough days. A toast to better days ahead! Your critical comments about the hospital made me only wonder what it must be like at a facility not even close to the league of Johns Hopkins!

  26. Warren Says:

    Sounds like another future job for you. Lecturing medical staff on paying attention to human planning and efficiency in a hospital setting.

  27. Ken Zwick Says:

    It’s good to know thay you were feeling a little better today than Saturday, Bruce. Ruth and I have been following your blog religiously from the start. I can’t tell you how much we admire your spunk in the face of adversity. Please know that our thoughts and prayers are with you and your family. And Lisa, you are absolutely incredible!!

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