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DAY 32

August 8, 2012

The hospital phase of my BMT journey will end in 2 days, Thursday.  If all goes to plan, I’ll be discharged from the hospital and will move into one of the cottages in Hope Village.  I stay till October 17th and then back home to Soquel.  I’ve met with the discharge planner, dietician, and nurse.  It’s well coordinated and they try to make the transition as painless as possible but by nature, it is anxiety producing.  I’m leaving a well known and controlled environment where they attend my every need and will progress to a more independent environment.  I’ll cook my own low bacteria food (well actually Claire will cook it).  They have cleaning people and people to help with problems.  I’m allowed to go outside but need to be cautious of large crowds and sun exposure.  I’ll still have to wear a mask.  They gave me a list of all sorts of GVHD that can occur day 30 to 100 and from day 100 to 1 year.  Lots of land mines out there.  It looks like the earliest I’ll be returning to part time work is early 2013 but could stretch to 2014 depending on how my immune system and blood counts progress.

This really impacts my life style.  Gardening is out even with mask and gloves.  The fungus in the ground is just too ubiquitous and dangerous.  Being out in the sun is out due to the problems I can have with skin GVHD.  On the other hand it’s recommended that I leave the house while it’s being cleaned which is OK with me.

I think I might spend some time doing a bit of PR advocating for young people to become BMT donors.  I’d like to spread the word about how simple it is to be a donor and how it can be life saving.  The days of harvesting bone marrow from the sacrum under general anesthesia are gone, it is now like drawing blood, much more convenient and donor friendly.  Of course, I hope to play more music as well.

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9 Comments
  1. susan garfield permalink

    three words DONATE LIFE CALIFORNIA find out about it. they are amazing. i know someone who works there. it is a good place to start. join their fb.

  2. George Schneer permalink

    Your progress is outstanding! Who said physicians don’t make good patients?

  3. Duffy Grant permalink

    Hi Jim,
    The constant progress on your part is terrific. I can understand that the change is anxiety producing but you are our hero. No stopping Jim Engelman!
    Love,
    Duffy

  4. Jimmie Wood permalink

    Go ‘head witcha bad self!

    XO

    J.W.

  5. Larry Levin permalink

    Jim, Thank you for the updates. It sounds exciting and scary to be leaving the protective environment of the hospital to stay in the cottages. I look forward to getting more information on your progress
    Larry

  6. Nachman permalink

    Dear Jim
    Your sweet character, ironic non-cynical wit, and mildly self-deprecating humor shine through all the pages of this journal, just as it did in person before you became ill. May you continue to smile through your recovery as you did through the periods of torture and continue, as you always have done, to see the bright side of everything.
    Noel

  7. Linda Bobbitt permalink

    You are an inspiration to all of us. Keep up the good work. I can understand the anxiety you must be having but of all the people I know you will fight it and come out with that wonderful smile you always have.
    I have wonderful news I thought I would share with you. Our son David and his wife Somer are going to have a baby. Grandma again. and My granddaughter Aimee is going to have a baby also. That will make us great grand parents for the first time. They will be about 3 weeks apart. We needed baby’s in our family. We are so excited.
    We love you and are praying for you daily. Dennis and Linda

  8. Jim and Sharon Coles permalink

    Dr. Engelman, I am sure you do not remember us as we left Aptos and you over 10 years ago to move to Davis and our grandchildren. We will never forget your kindness to us and our son Tony. Tony still lives in Capitola and sent us the article from the Sentinel. We knew you had been ill and our thoughts have been with you and will continue to be. We were blessed to have you as our doctor during our life in Aptos.
    Jim and Sharon Coles

    • Hi Jim and Sharon,
      Of course I remember both of you and Tony. Has it really been 10 years ago? How come I can’t remember what I had for breakfast but I can see all your faces clearly in my mind’s eye. I hope all is going well. I’m feeling good and exploring the possiblity of going back to part time work in 2015. I’m enjoying myself a lot. Playing my flute daily and I have a new grand daughter in Indianapolis.
      Best Wishes
      Jim

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