9-23-10 Thursday

Status: 9.0/10.  Back to feeling my old self again after all that poking this week.

Events:  Didn’t realize until Lisa reminded me that our consultation with our oncologist is next Thursday, not today.  So I have a week at home!  Good thing she’s here to keep everything straight.

Comments: Of course, what we are waiting for is a go date for the transplant, but that all depends on having an available and healthy donor.  We do have 5 matched donors, and it’s a good thing we do.  We get all our information from the Hopkins transplant coordinator and have no access to the donor or the process.  But this is what she told us.

  The first donor said they didn’t want to donate using bone marrow but a technique called aphaeresis in which they filter out bone marrow stem cells from the peripheral blood.  Understandable since you don’t end up with a sore hip, but transplants with aphaeresis material have a higher rate of a particular immune complication after transplant, and Hopkins would rather not go that route.

 Donor #2 said he can’t be available until November, and #3 said he was too busy right now. Fortunately, donor #4 is willing and able, and the team is working to get him evaluated quickly.  If things work out they could start the transplant process in about 2-3 weeks.

  The system allows you to evaluate one donor at a time, so each “no” soaks up valuable time.  Lisa was somewhat disheartened and perturbed at the donor response.  She felt that they didn’t understand or perhaps had not been explained the commitment entailed in volunteering to be a donor.  There’s a small time window, and the feeling of, “I’m happy to volunteer if it’s not inconvenient,” doesn’t work well at this end. 

  We’re crossing our fingers and hope we can move forward.   




9 Responses to “”

  1. Bill Israel and Eileen Breslin Says:

    Wow. Those responses mean a whole lot more when hearing them through your words, Bruce. That’s enough to cure one of equivocation. Good to hear that #4 is on screen, and that it’s a possibility and soon. Cheering you on from San Antonio, friend.

    Bill and Eileen

  2. Art Ulene Says:

    My fingers are tightly crossed. Legs, too. Is there any way I can be of help? Art

  3. wendy Says:

    it does get complicated..my patients on kidney transplant list with a living donor get frustrated not hearing about their donor info. But it’s a fine line that transplant centers respect on both sides. Here’s to the belief that all thing happen for a reason and this final donor is a meant to be! The cure.!!!!! sooner than later

  4. Wally Schlech Says:

    Wish I was a match… but I’m sure one will come through for you.

  5. Judie Davidson Says:

    The response of too busy makes me angry. Seems implicit that in profering oneself tto be a donor, the person understands that timea is of the essence.

  6. Sheryl Stolberg Says:

    I am so mad I could spit.

  7. joel steinberg Says:

    That seems to be how it is with most “volunteer” things. Happy to oblige–but only when it is convenient. If I were a potential donor, I would drop whatever I was doing and make myself available. Also, what’s a sore hip compared to the chance of saving a life? I’m mad, too. Joel S.

  8. Tom Toftey Says:

    Hey Bruce — I’m thinking positive thoughts on donor number 4!! Wishing you and Lisa all the best, my friend! It’s clearl autumn in Chicago; woke up to a chill in the air today.

  9. Peggie Neill Says:

    Hey there Bruce,
    Your written voice has more pep – glad to “hear” it.
    Read your last note and for some reason had a flashback to a line from the Desiderata, that “the universe is unfolding as it should”. Maybe there is a higher reason to have donors 1-3 move aside so that donor 4 or whomever moves up.
    You are going to get to the other side of this transplant – I believe in you.

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