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Day 20 of being home

November 18, 2012

I had my first scheduled outpatient appointment at the COH last Thursday after being back home for about 2 ½ weeks.  I drove down 101 alone without any problems.  Claire stayed at home.  It was so relaxing.  Something about long drives really keeps me in the “now”.

It was great seeing old friends at the COH, like a reunion.  Lots of familiar faces like Holly in VOD, Annie in scheduling, Jean at the Biller Center, and Danny one of the patient coordinators, and some of the clinic nurses.     I saw 2 fellow members of the transplant club Edie and Ray, and that definitely felt good.  Our bonds were as strong as ever and it was nice spending some time and catching up.  Things have progressed like we all have hair, some more than others.  It felt very comfortable being there.

My blood test showed my Hbg is climbing, 13.3 but my WBC is still low so they gave me another shot of Neupogen.  I want to say to my WBC, “come on WBC, get with the program and wake up”.  As Eliza Doolittle so eloquently put it in My Fair Lady at the horse races, “move your bloomin arse”.  But it’s one day at a time and another lesson in being patient.

We’ve been home for a little less than 3 weeks and its brought up some unexpected challenges.  When Claire and I were at the COH, we just accepted what ever was thrown at us.  After leaving the hospital we lived in a 500 sq foot cottage for 2 1/2 months and pretty much spent every moment together.  They told us I needed a caregiver 24/7 and so we did not argue.  We each had new roles.  But being home is another story in that we have a prior history of 22 years of living together in our Soquel house.  I went to work and spent a lot of time gardening and being out of the house.  We knew our roles.  Now, I’m immune compromised so I can’t work as a doctor nor do they want me gardening or in public places.  This has pretty much relegated me to being at home and that means Claire sees a lot more of me and has lost some “alone time”.  Add some micro managing by me and the fact that I’m from Mars and she is from Venus…  I’m sure you can fill in the rest.  What surprised me is that I’ve learned that this is an extremely common scenario for post transplant couples.  I’m constantly amazed by some of the consequences of this transplant.  Not only has every organ in my body been affected  as well as my emotions and spirituality, now there is this whole new dimension.  What’s next?

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8 Comments
  1. rose marie cardona permalink

    Welcome to the home life of retirees!! At least you will be all broken in when the time comes. Healthwise you sound very good..patience and time. We anxiously await the email that says “I’M BACK IN PRACTICE. Hank and Rose Marie

  2. Alexis permalink

    You seem to be doing very well so far. Keep up the positive attitude

  3. laura maslon permalink

    i love getting your emails. when life gets a little tough for me, i think of what you are going through. i so admire your courage and your honesty. and i love your writing. laura

  4. susan garfield permalink

    Now you know what retirement is like. Thank God Andy rides his bike for hours all the time and we have a slew of grandkids. See you soon.

  5. Chip Goldeen permalink

    Dear Jim,

    What’s next is you get healthy and get out of her hair! Congratulations on driving solo down to LA. That is definite progress, since a few months ago you couldn’t drive a wheel chair solo. Although I’m sure to you it seems too slow—you really have made great strides lately. How about Buster getting MVP, that was sweet. Happy Thanksgiving to you and your family.

    Chip

  6. sandy dini permalink

    Got info from lovely PAMF as to how we could get in contact w/you and have read your 2 most recent posts. Mark and I are so happy you are back home and can’t believe you had enough energy to drive to SoCal. Did you feel like making a break for Bahia de Los Angeles? Thanks for sharing your thoughts with all of us. So much to be thankful for this Thanksgiving.

    Sandy & Mark

  7. Linda Bobbitt permalink

    Glad to hear you are doing better and go glad your home. Now don’t over due and just get better. Happy Thanksgiving to you and your family. Dennis and Linda

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