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[personal profile] mimulus_borogove
1. Registering online at the National Marrow Donor Registry is pretty easy doesn't take very long. I did it last Thursday.

2. Thanks to a new technology called PBSC, sometimes the needed stem cells can be harvested through a procedure not unlike donating blood or platelets. No anesthesia needed. An old friend of mine is eligible for a bone marrow transplant using PBSC.

3. Getting into the database is the longest part of the screening process. My swab kit is already here, but it will take weeks to process it if I send it back the normal way. If I get it to my friend's family, though, they can expedite it through his marrow drive on Saturday.

I'm about to go swab my mouth and cross my fingers right now.

Date: 2008-11-14 09:52 pm (UTC)
From: [identity profile] kino-kid.livejournal.com
I just found your blog!

I would like to add that 70% of donations are now done using PBSC, but the traditional method is also not as bad as people think.

If you know anyone reading who lives in another country, they can still help your friend find a match (or they can match someone else). Searches begin locally, then expand if there is no one nearby.

Date: 2008-11-14 10:42 pm (UTC)
From: [identity profile] jaderabbit.livejournal.com
That's good to hear. I admit that I was a little nervous about the idea of a traditional-method harvest--not because of the marrow tap itself, but because of the general anesthesia. If I ever match with someone who needs that, though, I will talk with the docs about the options and the safety. I had a spinal block for my C-section, and that was fine.

I am actually very moved by the outpouring I've seen for my friend awaiting transplant. Someone has organized a marrow drive, and many of our former classmates have been posting on Facebook that they've sent in their swabs. If we can't help him, we can at least help someone.

Date: 2008-11-15 09:05 am (UTC)
From: [identity profile] kino-kid.livejournal.com
Firstly, let me know what I can do to help your friend. I am on Facebook and can put the word out to them through my friends, group and page. The pages for Emru have always existed to help others too, and I hope they will continue to. It helps if you can tell me what their ethnic background is.

I can also mention the drive on the blog.

"Marrow tap"? I am assuming you are thing that the procedure is similar to a spinal tap. It is not, but even I used to confuse them. There are two main ways to blunt pain at the point of extraction: general anaesthesia, and analgesic via epidural in the back of the pelvic bone. Spinal epidural are few and far between and rarely done these days. They are not the same as a spinal tap nor do they feel the same.

You have a balanced approach. If you ever do match someone, getting a full explanation before making your decision (and you will get a full explanation at that point) will put you more at ease.

I find the more information people get on the subject, the less apprehensive they are about donating. But it is such an avalanche of information because there is less visibility on the subject as a whole. I didn't check your profile, but if you are anywhere near my city there is are visitations this weekend. I asked my and Emru's friends who couldn't make it to watch some animation, or take time out to read a good book or comic.

Date: 2008-11-16 04:10 am (UTC)
From: [identity profile] jaderabbit.livejournal.com
I'm nowhere near Montreal, but I did talk to my mother-in-law about bone marrow transplants today. She was surprised at how easy it's become.

Date: 2008-11-16 04:36 am (UTC)
From: [identity profile] jaderabbit.livejournal.com
He's mostly German, but with some unusual allele that's prevented a match in the US and European banks so far. His drive was today, and I'm not sure we could get any more matches into the database before he goes for transplant next week. Is that possible? If so, I'd love to help.

Good to know about the anesthesia options. I like to be conscious, so I like knowing that might be a possibility. And I don't know how I came up with "marrow tap."

Date: 2008-11-17 05:03 am (UTC)
From: [identity profile] kino-kid.livejournal.com
Germany is the European country with the highest concentration of registrants, largely due to public awareness via high school education. It's taught for about 30-60 minutes, but it is a mandatory part of the curriculum.

Honestly, if his transplant date is a week, anyone who is registers now needs time for the swab kit to arrive at the NMDP, about 15 working days (if it is like the Canadian registry) to actually do the lab typing, then it has to be entered into their database.

Be careful about fixed dates. Often the date that is given is not a final deadline, it is an optimal date to receive the transplant. For instance, if Erik is in remission, the transplant date is usually set 10-14 weeks after remission. So, it's better to keep registering people in case his date changes. Besides, (broken record, but so true) someone else might need the person who gets registered now, even if Erik does not match.


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