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Chronic BMT, 1 year 3+months

October 13, 2013

Its been a while since I last wrote and lots of things are happening.  I’m in progress for developing  a BMT survival and support group locally.  I’ve talked to a variety of people and organizations consisting of hospital administrators, national organization, healthcare providers, and fellow patients.  It is easy to get overwhelmed by the scope of such a project in that there are so many different needs and ways to go.  The devil is in the details and the details are huge so it’s potentially easy for me to spin my wheels and not get anywhere.

So, here are some of my thoughts.  I want to interact directly with fellow transplant patients, locally.  We have our own idiosyncratic needs that distinguish us from solid organ cancer patients like breast, colon, and prostate.  There are overlaps but there are also differences such as GVHD, graft vs host disease.  In a way, I feel that I’ve been given a gift, a chance to pursue a new endeavor.  Not that what I’ve done up to now has been that bad but I don’t think I’d have taken on some of the emotional, psychological, and spiritual challenges without this occurrence.  In talking to fellow transplant recipients, there is a need for an interactive support group.  The Katz Cancer Center at Dominican Hospital has offered to be the physical site and I met with the medical CEO at Dominican Hospital who was excited by the prospect and supportive of this venture.  I’d like to do a local face to face group as opposed to an internet or phone group.  I’m still trying to find out how many of us are in the area so I’m reaching out to the local oncologist and to Stanford which is the regional BMT center.  Trying to find out who is a BMT recipient is difficult due to the privacy laws but I’m making progress.  I’m also interested in the post transplant medical needs of patients and will be attending an all day conference in November near Cleveland about GVHD and I plan on going to a 4 day meeting this February in Texas.  It’s the annual international BMT Tandem Meeting which is for transplant physicians and researchers and looks at all the scientific and medical aspects of Bone Marrow Transplant.  For me, this is very exciting to be with the international mover and shakers of the transplant world.

The financial needs of BMT patients are also an issue.  I had time to financially prepare but many people don’t have this luxury.  Developing fund raising events in Santa Cruz for patients in Santa Cruz could help.  A fellow BMT patient was the commodore for the Santa Cruz Yacht Club and there could be the future possibility of having a regata fund raiser.

Although I feel good and have more energy every day, I’m still on immune suppressants and need to be careful.  I’m gardening, playing my flute, and trying to keep up on the medical literature.  Over the last month, I’ve been volunteering at the local free clinic seeing non infectious people which has been fun.  I was a little insecure about my medical competency since I had not seen any patients in over a 1 1/2 years but it’s coming back.  There is truth in the adage “Use it or lose it”.  With the flu season approaching, I’ll have to stop going to the free clinic pretty soon.

I feel very blessed.  I’m thankful in that we’re having our first grandchild in late December and it looks like I’m going to be around.

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12 Comments
  1. Chip Goldeen permalink

    Dear Jim,

    You sound good and also very busy. Keep it up! Our Giants had a rough year, hopefully they will be back on track next year. Stay strong.

    Aloha,

    Chip

  2. alexis permalink

    that’s wonderful that you are doing great

  3. Dan Scharlin permalink

    HI, Jim. I could feel your excitement in you latest note. How wonderful for you. My best to you and yours.

    And pending Grandparenthood? There is nothing like it. Mozel Tov.

  4. Gwynn Thoma permalink

    So good to hear from you. You could never just sit and not keep up with life and helping other people. We miss you a lot and I know Lee loves to send you emails. Take care of yourself!!
    Lee and Gwynn

  5. Ann S. permalink

    Doc, good to hear from you again. I thought you two might have sailed off to warmer climes for the season. Am glad that you’re getting so involved in this project – we’ve watched it germinate through your posts this past year. Let us know how we can support you in it. Best to C. Ann.

  6. Bennett Katz permalink

    Maybe you could describe what is and what isn’t covered by insurance, both private and public.
    Also what other financial resources are availabe. Thanks

  7. Ron and Merrilyn Marker permalink

    as usual, you amaze me. I get nervous when we don’t hear from you the first of every month, but so glad you have found “your calling”. You are amazing. Anything we can do to support you in your new project, let us know. Always ready to help. Merrilyn Marker

  8. Larry Levin permalink

    Jim, What you are planning to do is fantastic. I am sure you are going to help a lot of people. Glad that you are doing well. Talk to you soon.
    Larry and Diane Levin

  9. marc yellin permalink

    I am also so very glad that you’ll be around for many more joyous events yet to come. You have my full support.

  10. susan garfield permalink

    So good to hear from you. You looked so good last time I saw you at your mom’s. So glad that your dreams for this org are coming true. When we talked about it at Peter’s house you were so into it and I was so happy for your passion for it and I knew it would happen for you because you weren’t going to sit around and not do something proactive with what you went through. And you are a doctor. A wonderful doctor who I went to. Remember? You can keep your feet just as wet as you want them to be. And so cool about the Free Clinic. Maybe some day we won’t need free clinics. Right on and all that crap. Hope to see you soon down here in LA during the holidays and so exciting about the baby Gramps. Love to you and yours.Playing three way with your mom as soon as i fix my Mahj Jong glasses. I sat on them!

  11. Bob and Kris Bloom permalink

    Dr. E….So proud of you for “paying it forward”. Keep well and keep up all the GOOD work. We miss you loads! Bob and Kris Bloom

  12. Brent Welling permalink

    Jim,
    I applaud God’s calling and your enthusiastic answer ! You are a superb MD who has now been there – – done that. As a result, you can bring vast medical knowledge, personal experience, and comfort to local BMT patients.
    Speaking for all your past patients, we will miss “our doc”. But, who in their right mind would want to be in medical practice under the new ObamaCare?
    Go do it grand-dad !
    Brent

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