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January 15, 2013

I know now that my health and body will never be the same since having the transplant.  Being a “hybrid”  is a mixed blessing.  On the one hand it’s nice to be alive but my susceptibility to disease is forever increased and my health is more unpredictable than ever, a tenuous and disconcerting place to be in.  Recently I’ve had some breathing problems and chest discomfort.  I’ve down played it because it hasn’t been that bad and I hoped it would just disappear.  Through this, I’ve gotten to know my Stanford doctor’s nurse, Gayla, pretty well.  On the phone, she is a no-nonsense lady with a southern drawl.  She made me promise on Friday that if I got worse over the weekend that I’d see a doctor and specifically, NOT the one in the mirror.  Today, I went to Stanford for a CAT Scan of my lungs, pulmonary function test, blood test, nasal virus swab, with the finale of seeing my doctor.  But I wanted to meet and see what Gayla looked like to put a face with the voice.  She is about 60 years old and maybe 5 feet tall but I felt like she towered over me.  Not a person to mess with.  She read me the riot act, beat me into submission, and then made me promise not to work in the yard,  go out in public places, and not be stupid.  It was comforting and reassuring to have someone on my team at Stanford who really cares, and that I can call and will be there for me.  This was the first time that I have had a significant problem and have put Stanford to the test.  They passed.

So I have some sort of pneumonic process going on.  Possibly infectious with an inflammatory component, either a reaction to Sirolimus or GVHD.  With transplant patients, the doctors don’t tend to wait and watch because patients can crash and burn quickly.  With the lungs, we’re always worried about fungal infections, I think I dodged it this time.  I’m on an antibiotic and we’re tapering the Sirolimus.  It’s sort of an empiric approach, try it and see what happens.  The rules of medicine are for normal people, not for transplant patients on wierd drugs.  Sort of like the wild west, no laws out here, not very civilized, definitely not predictable.

Most of my transplant friends have had sudden intermittent health issues and I think for now, I will be no different.  It gives me that much more of an appreciation for all the good times and for being alive.


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  1. Marc yellin permalink

    Keep getting better and we’ll still have that lunch. I may even pay!

  2. Julie Dresner permalink

    I’m glad to hear you found a dr close by. I’m sorry to hear about the lung issues. I know what that is like. Have they done a tap? I go back this week for more tests. Preliminary results were all negative but a bit of fungus grew and they want to be sure how to treat.
    Im feeling much better. They put me on 6days of medrol and a zpack. Cough is so much better but my back and diaphragm are so achy.
    I don’t know if you read my latest caring bridge post but I feel like a Wack-a-Mole. Bop one down and another pops up. Im not sure if you get my posts.
    IlL send it to you if you want.
    I have many friends that made it through the first 2 yrs and are doing well. We are lucky to be here to enjoy the moments

    All best. Julie. Ps Sarah came to visit. Lovely to see her.

  3. permalink

    Hi, Jim, We keep you in our prayers. I saw Susan Gorsky a few days ago and she said she and Buzz had lunch with you and Claire. Susan and I sang for about a half an hour and it was great fun! It is a good thing for you to have dedicated medical teams at both Stanford and City of Hope. A strong willed and competent nurse at Stanford, not to be messed with, is an equally good blessing however daunting. I am reading a book by an Indian teacher teacher, Nisargadatta, whose premise is that we are not the body. His belief structure is all about “I am”. I read his teaching and not think because often the teachings are a bit mind boggling. To understand his words, one needs to let go of what we perceive to be real. I have a new synthesizer which is also somewhat mind boggling! It has many bells and whistles and capabilities. I am having fun learning to operate this musical machine. It definitely is bringing out the creativity in me. That is a good thing. Several weeks ago on New Year’s Eve Tim and I attended a multi-faith gathering at Holy Cross Church led by Cyprian Consiglio, our friend who is a priest and singer/songwriter. He is a member of the Camaldolese Order whose monastery is in Big Sur. At one point in the service members of the Santa Cruz Zen Center led a Metta, a healing chant for one of the members of the Sangha group at Holy Cross who is in treatment for an adrenal gland cancer. Part of the chant was in Japanese and was extremely powerful. We have a copy of the chant and I have used it at home just to learn to resonate with the intonation and the words. I don’t know how the woman we know is doing. Her story is very interesting. Enough of my Monday night ramblings! We think of you every day and wish you both well. It sounds as if you are not supposed to have more social gatherings at the present time but we can certainly connect in the world of cyperspace. Best to you both! Tim and Betsy

  4. susan garfield permalink

    Hang in there and stay out of the yard.

  5. alexis permalink

    hang in there uncle jimmy! you are doing a fabulous job healing. just stay relaxed and easy going

  6. Watch out for Gayla and be smart! We’ll wash the bridge cards and have fun watching the 49ers this coming weekend! Get better!

  7. Nina Haedrich permalink

    Well, my dear Jim, I just want to remind you that you promised to be at the workshop this year. But of course that must be subject to your safety & well-being. I am 2nding the lady at Stanford and at the same time hoping that we get to see you. Warmest cyber-hugs which hopefully carry no germs. Love Nina

  8. Ann S. permalink

    You know those t-shirts that say things like “Don’t make me use my opera voice” . . . well, we should pool our money and get a couple dozen screen printed that say “Don’t make me use my Gayla voice.” Everyone around you would wear one.

    Plan B would be to visit the local law enforcement agency and get you fitted with one of those electronic ankle cuffs that set off an alarm when you leave the house. I’m told by some dubious young men I used to work with that we just refer to them as jewelry – and that we don’t ask questions.

    I think of you often and look forward to your posts. Keep them coming and take care of yourself!


  9. Loren permalink

    Hey Jim,

    Your posted letters are the equivalent of a grammar experience for me, with more new words in your letters than in my Lexulous games with Humboldt workshop folks and other keepers of the word. There are lots of times that I’m happy enough not to know what GVHD is because I prefer to focus on you growing in so many ways each day. If you ever do hear from any of your Stanford contacts (I’ve heard, but seldom from Berkeley folks, that there are some especially capable minds lurking at Stanford) exactly what WOX means please do let me know; I can’t find it anywhere except as the imp. of wax and that doesn’t make sense. Like so much of life, as you have pointed out in your letters.

    I liked Ann’s suggestion regarding T-shirts. Maybe you will find one that says “Don’t make me toot my high register.”

    Empiric seems to be the way to go. Try it and see if it works. If that observation wasn’t shared with a research physician by some piccolo teacher, I’ll eat the little dragon with garlic relish.

  10. Holly Bengtson permalink

    ALL HAIL QUEEN GAYLA!!!! I LOOOOOOVE HER!!!! I meant to write u after your last post when u said u were going to “stop and smell the roses” that you weren’t actually supposed to SMELL the roses! I really remember whenever I got anything, it wasn’t that I got sicker than “normal?” people, but everything lingered longer. So glad to hear you’re in good hands with Gayla and her Stanford posse! Miss/love u! Be a good boy/doctor! Holly

  11. permalink

    Hurray for Gayla – I’m sure Claire is thankful for the “riot act”!!!

    We’re set for SJ Rep on 27th at 2 pm.  We’re crossing our fingers that you’d be able to make it.

    If so, lunch at our house before we go around 11:30 – 12:00 noon.


    Sun-Ah and Charlie

  12. Larry Levin permalink

    Take care of yourself. The yard can wait. Hope you are feeling better now.
    Larry and Diane

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