Caregiving isn't easy
by - Written: Nov 19 '03
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Product Rating:
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Pros: Plenty of wit, brutally honest without slipping into cynicism
Cons: Some readers may not like the diary-like way in which the book is organized
The Bottom Line: ACROSS THE CHASM is a valuable addition to the lay literature on transplantation.
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| Kidnykid's Full Review: Naomi L. Zikmund-fisher - Across the Chasm: A Care... |
ACROSS THE CHASM tells the story of a bone marrow transplant, from the perspective of the patient's spouse.
In 1998, Brian Zikmund-Fisher was diagnosed with myelodysplastic syndrome (MDS), the same disease which the late Carl Sagan had, after a sports injury left an unusually nasty bruise. He learned that the only permanent cure for the disorder was a bone marrow transplant; any treatment short of that (nutritional supplements and drugs designed to raise blood counts, transfusions and so forth) could fairly be called a short-term "quick fix" only. The problem is that the more transfusions an MDS patient gets, the more likely he or she is to be sensitized to a donor's bone marrow (or any donated solid organ, for that matter). Therefore, it's better to get a BMT early in the transfusion-dependent stage of MDS rather than later.
So, despite feeling relatively good but for his dependence upon donated platelets, Brian and his wife Naomi - who was six months pregnant at the time Brian was diagnosed - started the search for a matched, unrelated bone marrow donor. (The search for an unrelated but matched donor, common in situations like mine, is considered the "court of last resort" for people in need of a bone-marrow transplant, from what I understand. Relatives tend to be tested first; the problem in Brian's case is that he is an only child, making a costly unrelated-donor search mandatory in his case.)
ACROSS THE CHASM is written by Naomi Zikmund-Fisher. Actually, she compiled a group of emails she sent to a variety of family members, friends and physicians, and edited them specifically for ACROSS THE CHASM. These compiled emails offer the caregiver's story - a story not often told.
It seems as if the caregiver's story is often lost in the shuffle whenever a family member gets sick. As I can verify from personal experience with a solid-organ transplant, people ask about the patient rather than the caregivers of the patient, and this is definitely the case in the Zikmund-Fisher household. This very fact is what makes ACROSS THE CHASM such a valuable resource.
It helps that Naomi Zikmund-Fisher is a superb writer, adding wit and honesty to her account of husband Brian's BMT. She is grateful for the gift of life offered to her husband by an anonymous Australian man, but that doesn't mean she likes some of the treatment she and her husband got during the process of recovery. Nor is she all that fond of having to deal with insurance companies, one of which gave her nothing but grief over the costs of the donor search. (It's expensive to test potential bone marrow donors, and is the only part of the BMT process which is not standardized, apparently.)
Of all the forms of transplantation out there, I'd be most afraid of being told I needed a bone-marrow transplant. In ACROSS THE CHASM, Naomi Zikmund-Fisher tells readers (more capably than I might) just why this is such a drastic and frightening procedure. Caregivers and family members like Naomi have a much heavier burden than do those in my husband's position. I'd recommend reading ACROSS THE CHASM - available from BMT InfoNet, which benefits from the sale of the book (along with another bone-marrow transplantation charity) - just because the perspective of the caregiver is detailed so well in it.
Recommended:
Yes
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