The Official #BloodKode Challenge Thread ~:-)

[BigC]

Re: The Official #BloodKode Challenge Thread ~:-)

Is there any issue for non-Americans who want to donate blood while there or get checked for a match?

[astcell]

Re: The Official #BloodKode Challenge Thread ~:-)

If you are not living in America they will have questions about your travel and inoculations. Some country's citizens are bared from donating. Best to check with the screening folks.

And do NOT drink coffee or other caffeine before donating, they hate that.

[barkode]

Re: The Official #BloodKode Challenge Thread ~:-)

Well guys, holy shit.

Seriously, this has been a hell of a situation. The community support has been staggering, and it's helped more than any of you could possibly understand. Reading through these threads... I mean, what do you even say.

My tremendous thanks (and the whole story) are posted in a rather long, personal blog entry over at http://matthewmlewis.tumblr.com/

An extra thanks to Jayson and Eris for taking such a charge in this, and everyone who has sat down and given blood either to the Red Cross or any other organization, Kaiser or otherwise.

Couple of notes:

1. The directed donations are amazing, but I'd hate for anyone to hesitate giving blood due to logistics concerns about directing a donation towards me. At the end of the day, it really doesn't matter whether you give blood freely to the Red Cross or in a directed donation at Kaiser. Whether you give to me or someone else, you're giving, and giving is what counts. I used to be a Red Cross donor myself even as a Kaiser member.

Giving blood at all is just an incredibly selfless thing to do, and I'm inspired by how many people actually went through with it. Kudos to you. Every pint can and very likely will save someone's life. It's a serious impact.

My immediate need for rapid transfusions is over (after nine transfusions). I don't know when my next will be. However - there is a tremendous need for blood donations in this country, and I hope that the motivation to give blood doesn't stop now. I would encourage anyone capable to consider donating blood to your local blood bank.

2. There is a treatment (not a cure) for PNH, a specialized medicine called Soliris - the world's most expensive drug according to Forbes. The treatment is a special type of immunosuppressant, and delays the need for a bone marrow transplant. I'm currently on the treatment and it looks promising. If it works very well, it will also reduce the amount of blood transfusions I need on an ongoing basis. Ideally, if Soliris is effective in me, it will delay the bone marrow transplant for years.

See the blog post I mentioned earlier for more details on that.

3. The Bone Marrow Registry (Be The Match guys) - this is an amazing organization. I wish everyone in the world was signed up for it. I signed up last year at DEFCON. (I can no longer be a donor.)

Donating or receiving bone marrow is a life-altering experience. It is stupidly easy to sign up (it's a cheek swab), and the rumors about painful processes for donors are greatly exaggerated.

For what it's worth - I just had a bone marrow biopsy (this it the painful thing everyone talks about.) It sucks horribly - but it is NOT what you go through as a DONOR. Donors often just have to take some meds for a few days, jack into an IV for about four hours, then they go home. End of story.

If you're a healthy person, there's no reason you should leave DEFCON without taking five minutes to sign up for Be The Match.


In short - this has been a complex experience. Expressing the gratitude I feel towards the community is going to take a larger effort than a brief forum post. In the meantime, my heartfelt thanks goes out to you all.

[Whiteb0rd]

Re: The Official #BloodKode Challenge Thread ~:-)

barkode:

It's good to hear from you, that you're through the immediate crisis, etc.

As to the thanks, at least from my POV: thanks for the ACK, but that's just what friends and a community do.



Will we be seeing you in LV?





WB

[Jayson.Street]

Re: The Official #BloodKode Challenge Thread ~:-)

Barkode that is AWESOME news!! I am man enough to say I had my tear ducts on overtime while reading your tumblr post! ~:-)

I don't deserve nor desire any thanks or credit. I started calling out let's do something like several others did and then a lot of great people came together and made it happen! All props to the DEFCON crew & Geo.

Hope you are at DEFCON but if not you will be there in spirit (plus a few signs of you). ~;-)

I also registered for Be the Match last year and I'm hoping we get thousands to do so this year!

Also if getting a Mohawk helps people think about it and gets them to donate well then shave away!

Stay well my friend see you at the Ninja party next year! ~:-)

[GeneErik]

Re: The Official #BloodKode Challenge Thread ~:-)

So I just thought I should add something. Through research of my own, I have found that not only are the directed (named, but non-prescribed) donations not done anywhere except kaiser, but even then, its only for Kaiser in LA and San Diego Counties, meaning that even if you find a kaiser, your donation will not go through the Kaiser system. My area uses Red Cross.

I'm thinking in order to spare the donation area (and my alcohol system) at Defcon, I will just make a donation normally through Red Cross, then the next time I'm in SoCal, I will make a directed donation.

Just thought I'd share...