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2 yrs & 2 months +

August 29, 2014

Every day takes me farther away from the “acute” transplant experience and is replaced with the challenges of “what’s next” on the roller coaster of life. Overall, I’m feeling good except for some minor persistent GVH mosquitos. The bad dermatitis and liver inflammation are gone since restarting Tacrolimus, the immune suppressant drug. I still occasionally get transient mouth sores and lesions after eating. They come up sporadically after a meal without a food predilection and last maybe an hour or two. I’ve also noticed joint stiffness but I am almost 64 so I’m entitled. The issue is always trying to differentiate bizarre manifestations of GVH vs normal aging or something else. I’m tapering the Tacrolimus but slowly so I’ll continue with the program and see what happens. In a way I appreciate the symptoms as a reminder of what is really important. If this is as bad as it gets, I consider myself very fortunate. GVH can be devastating and I know people who have had significant problems.

The Santa Cruz BMT Support Group is taking shape and our first meeting for patients and caregivers is scheduled for October 9. We have a list of about 30 people in the area and have yet to reach out to the rest of the Monterey Bay area or Salinas. We will use the Katz Cancer Resource Center for our meetings and have engaged the services of a professional facilitator versed in BMT medical issues as well as the psychological, emotional, physical, and spiritual issues. I’m really excited about this.

On the home front, everything is good. We recently went to our cabin in Puget Sound with our entire family and it was wonderful! Next month, Claire and I are going to England where I’m participating in a week long chamber music workshop and then to the Cotswold for 2 weeks.

Depending on how things develop with tapering my Tacrolimus, I hope to be able to go back to the practice of medicine part time next fall. I’m going to several medical conferences a week, reading journals, and participating in on going continuing medical eduction. I really enjoy it. It’s good food for my mind and soul.


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  1. Patsy Benfield permalink

    Aloha Dr. E., So happy to hear from you & that you are taking in all the strides that pop up. You have a great constitution and I believe you will be successful in all that you attempt. Life for me has
    been something else. Have stopped taking delestrigen (sp?) shots. Knees are making me more
    deliberate in how I attack daily chores. Isn’t life wonderful!!!!!!!!! Love to you, Claire & all the family.
    Oh yes, & have a great Labor Day holiday. XXX Patsy B.

  2. Hal Hyde permalink

    Jim- So pleased to have this report and know you are so much the Captain of your body, soul, and schedule. Let the two of us have a simple lunch together in Aptos, any Friday, Noon to 2, you pick the place, meet there, or I can pick you up. Love to Claire. Let me know. Best,

    Hal Hyde

  3. I have been thinking about you and the fact that it was time for a new update. So glad to hear that everything is progressing in a positive manner. Enjoy your upcoming trip and stay positive. Merrilyn Marker

  4. Bob Smtih permalink

    I’m so glad to hear that you able to do fun things like vacations and a trip to merry old England.
    Take care.

    Bob Smith

  5. Holly Bengtson permalink

    Hi Jim! Loved your post!….and can identify so much…..I had the liver inflammation/mouth sores/stiffness…..I’m still on Sirolimus (just increased to 4/d) 14 years later!!!! I’m 64 and I’m blaming EVERYTHING on the transplant…including if I burned dinner, or turned left when I should have turned right!!!! Haha. Love/miss you & Claire….Holly

    Sent from my iPad

  6. Allan Radman permalink

    Hi Dr Engelman

    Glad you’re doing better. My mom is a two-time cancer survivor. It has now been 22 years since she last was diagnosed with cancer (Liver/Colon). She’s now 81 and doing well.

    Be well.

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