Myelofibrosis–A Personal Journey

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The Plan Comes Together

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The faculty at Fred Hutch/University of Washington decided R should get bone marrow stem cells from a young, closely matched 9/10 unrelated donor instead of his 69-year-old brother, a 10/10 match.

HOW IS A DONOR CHOSEN?

The deciding factor is how closely the donor’s immune system matches the patient’s. Doctors look at Human Leukocyte Antigen (HLA) typing. HLAs are proteins on white blood cells.

If the donor’s HLA type matches the patient’s HLA closely → the immune system is more likely to accept the donor cells.

If there’s a mismatch → the donor cells may see the patient’s tissues as “foreign” and attack them, or the patient’s immune system may reject the donor cells.

R’s anonymous donor likely has a similar ancestral makeup–in his case, mostly Swedish (Mom) with a tangle of other Northern European (Dad).

A young donor’s cells have a better chance of moving into the patient’s bone marrow, settling in, and making new blood cells (engraftment). The HLA antigen that doesn’t match R’s HLA type (thus the 9/10 score vs 10/10) is an antigen with relatively low importance, so the doctors aren’t overly concerned.

Now, about the…

INSURANCE

Hutch has cleared up the insurance issue, and they’re confident our private insurer will cover the costs (1-2 million dollars!!!), although it’s not a done deal yet.

TIMING

  • Starting the week of October 20th R will have all sorts of tests to make sure he’s healthy enough for the transplant. This takes approximately 2-4 weeks.
  • If he gets a green light, he’ll get admitted to the hospital and start preconditioning–meaning 5 days of chemo to kill his immune system.
  • Then, one day of rest.
  • Then, the transplant itself, which takes all of 1-2 hours and…
  • approximately 3 weeks’ hospital stay (if no serious complications) followed by…
  • 100 days of living in Seattle, so we’re closer to the hospital for gobs of appointments and in case of emergency. We’re currently evaluating our options for places to live.
  • If all goes as planned, the transplant will happen in mid-November. Thanksgiving and Christmas will be different this year!

It’s good to finally have a window of time to work with. It’s been hanging like an anvil over our heads for more than 2 years.

We canceled an October cruise of the Danube, thinking R would be in the hospital by then. Traveling overseas is not advisable. Once we realized R wouldn’t be in the hospital yet, we booked a shorter trip within the US–our last hurrah for the foreseeable future.

R is going to rock this thing!

3 responses to “The Plan Comes Together”

  1. Sandra Barnes Avatar
    Sandra Barnes

    Glad that the plan is going forward….

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  2. Angel Averman Avatar
    Angel Averman

    We are keeping you in our thoughts and prayers.

    Craig and Angel Averman

    Like

    1. dianajnoble Avatar

      Sorry it’s taken a while to respond. We appreciate your care and support. Every bit helps!

      Like

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