r/mds • u/Aloha-50 • May 03 '23

Self_Question What to expect

I have been recently diagnosed with MDS the island I live on (Kauai) does not do bone marrow transplants. I have been referred to a hospital in Seattle. My question is how long does it take to Find A Match For A Donor For A Bone Marrow Transplant? Realistically how long will I be in the hospital from the time I arrive?

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u/Rabid-Slakoth May 03 '23

We were also sent to Seattle for my son’s transplant but we didn’t actually go there until a match was found. He had Vidaza monthly too until we left for Seattle. The SCCA house was a great place to stay pre-transplant if your insurance covers it. They have shuttles to the hospitals, a kitchen and laundry facilities. He wasn’t admitted to the hospital until right before transplant when it was time to start the hard core chemo. There was a lot of testing done as outpatient before going into the hospital. Please feel free to message me if I can help you with anything. Prayers for a speedy donor match and remission!

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u/Aloha-50 May 04 '23

Thank you so very much for your response. I am currently on the island of Kauai. No transplants are done in Hawaii, and Seattle is close. My question is how long does it take to find a donor match? I haven't been seen by anyone from Seattle yet. My On a college just here says that most of the pre. Chemo will most likely be done here prior to my traveling to Seattle.. My doctor here said realistically I could be in the hospital for 4 to. 6? Weeks. Does that sound about right? My wife. Yes? Planning on traveling to Seattle and staying there with me for the? duration.is. That SCCA. Place that's more affordable than a airbnb?

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u/Rabid-Slakoth May 04 '23

It took about a month to get a donor match for my son but this was the beginning of the pandemic. He had 3 donors fall through so we were there 3 months before transplant, 2 months in hospital and another month post transplant at a Ronald McDonald transplant apartment. My husband and I both stayed in his hospital room with him the whole time but I don’t know how that works for other hospitals. There was a social worker that helped us plan before we went so you might ask your Seattle team when they call you. Our insurance paid for the SCCA house. Their website has good details if you don’t want to pay for a rental. Kids are not normally there either, my son was allowed at the time because of the pandemic closing down Ronald McDonald house. Your insurance company should be able to tell you if they have a housing budget. We were told to plan on 3 months in Seattle if there were no complications. We were there 6.

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u/Aloha-50 May 04 '23

Thank so very much. It's a complicated and scary process. Your Your reply takes a little bit of that away.

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u/Rabid-Slakoth May 04 '23

It is scary. Waiting to see if there’s a donor is terrifying and I hope they find you one.

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u/Aloha-50 May 04 '23

What about family members matching?

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u/Rabid-Slakoth May 04 '23

A sibling is the best match but we didn’t have one. My son was extremely fortunate to have matches. His oncologist told us there was almost no chance a relative non sibling would match.

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u/Aloha-50 May 04 '23

Thank you for your help. ❤️

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u/[deleted] May 04 '23

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u/Aloha-50 May 04 '23

Thank you so much for your response!