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Join "Be the Match" for FREE to be a Marrow Donor

8 88 January 7, 2012 at 10:03 AM in Other (2)
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This month I decided that I wanted to join "Be the Match" to be entered into the database for bone marrow donors. I knew that it was going to cost $100 in order to offset the cost of the lab costs to test my cells. However, when I went to sign up yesterday it was nice to see that the American Express Foundation has issued a grant to pay for the cost of being registered with "Be the Match" during the month of January.

Simple go to:

www.marrow.org [marrow.org]

DETAILS:
When you join the Be The Match Registry® today, you are joining to help any patient in need of a bone marrow donor. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, a late decision not to donate can be life-threatening to a patient, so please think seriously about your commitment before deciding to join.

You can give hope to patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases. Patients especially need you if you are between the ages of 18 and 44. That's because younger donors produce more and higher-quality cells than older donors.

The American Express Foundation has provided a grant to cover the costs associated with joining the registry online for the month of January. Service to its customers and to the community has been a hallmark of American Express throughout its 160-year history. As part of its community outreach the American Express Foundation encourages good citizenship by supporting organizations that cultivate meaningful opportunities for civic engagement by its employees and members of the community, whether as volunteers, donors, voters or patrons.

Community Wiki

Last Edited by mgm91 January 7, 2012 at 06:40 PM
Please ask questions and do research PRIOR to signing up. The process does have some minimal risks, and depending on the patients needs, could possibly involve some pain in the donation process. The simple truth is, you cannot know what exactly they will need of you because they cannot know ahead of time who you will match and what condition is causing their need for donor marrow. There are people who have been on the marrow donation list for DECADES and have never had a call. You just can't know ahead of time how things are going to work out or what will be needed.

It's better and considerably more charitable to think about this and know exactly what you are signing up for, than to just click and go. It costs a fair amount to process these, but even more important is the patients life and well being.

Marrow donation requires a VERY close match. A patient who gets marrow that doesn't match closely enough can suffer horrendous setbacks, and death is even a very real possibility. To be told there is a good match for you, only to have a donor back out because of fear or having not thought things through is heartbreaking on a level I hope no one ever has to face first hand. I have been there.

Address your concerns please. There is no one working in or with the organ and tissue donation arena that will be anything less than gracious and patient with any questions or worries you have.

I have been involved in kidney donation advocacy for a while now, but decided to join the marrow registry when a friends 4 year old wasted away in under a year from leukemia. The need for marrow donors is even more desperate than the need for blood, because the match has to be much much more exact.

Be the match is VERY good about answering question and giving information and I can also help direct you to info if you need it.

orphicdragon on the forums
[email protected] if you would prefer to email

Donation is one of the coolest things you can do, and if you know what you are getting into and what it involves you won't regret your choice.

Additional message from mgm91:
Hi all. I'm an intern donor recruiter with Be The Match and have experience with answering questions and registering donors. Please feel free to PM me any questions also. Thanks for signing up!
Myths & Facts about Bone Marrow Donation [marrow.org]

Donation FAQs [marrow.org]



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Joined Oct 2006
Broke Baller!!!
> bubble2 1,238 Posts
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Hellion
01-07-2012 at 02:38 PM.
01-07-2012 at 02:38 PM.
Im in the military and some years back i was notified that i may be a potential donor. Never was eventually, but was totally stok'd when i got a letter saying that i might have been.
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Joined Jun 2008
L2: Beginner
> bubble2 35 Posts
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asky
01-07-2012 at 02:40 PM.
01-07-2012 at 02:40 PM.
I already have joined about five years ago, and it is really good to see all of the positive responses from all of the Slickdealers!
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Joined May 2007
Olympic Bargain Hunter
> bubble2 1,194 Posts
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moongazebo
01-07-2012 at 02:40 PM.
01-07-2012 at 02:40 PM.
Quote from karanpp :
also want to commend moongazebo! Hope your nephew is doing well.
Thank you. Well, he has been in isolation for 85 days....but I guess it's good that he's made it this far. All we can do is wait and see.

I knew I would not be a match for him. However, I hope I am a match for someone. I don't wish on any family what my sister's family has gone through. Interestingly - my sister gave birth this week..... to a baby she found out she was pregnant with two days after she found out my nephew had cancer -- can you imagine how this pregnancy has been? Because she was high risk, they couldn't test the baby to see if she was a match, either. What a lifetime movie!

Please everyone - register to be a bone marrow donor. The test IS free. The testing procedure IS painless. The act of saving someone's life IS priceless.bulb
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Joined Dec 2011
L2: Beginner
> bubble2 96 Posts
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meggs
01-07-2012 at 02:45 PM.
01-07-2012 at 02:45 PM.
Quote from danchay :
Again do your research. "This analysis included 9,282 bone marrow harvests carried out between 1987 and 1999. [Also note the 12 year old study] These researchers identified 345 cases that were considered potentially serious and included: excessive pain, adverse acute anesthesia reactions, delayed return to normal activities, or the need for additional medical intervention. Of these 345 cases the researchers identified 125, 1.35% of the total population, that were considered "serious". Sixty-nine of these cases were mechanical injury to tissue, bone or nerve, 45 were anesthesia related events, one was an infection, and there were 9 events unrelated to donation. Thus, 116 donors had serious complications directly related to donation."

If you do a simple google search for marrow donation complications, you get approximately 420,000 hits.

Choking on water yields 22,500,000 hits, so you tell me what seems to be the bigger "issue."
PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream.
http://marrow.org/Registry_Member...ation.aspx

Specific Warnings and Precautions for Filgrastim
Warnings and precautions to be aware of prior to taking filgrastim include the following:


Very rarely, filgrastim may cause enlargement and rupture of the spleen. Tell your healthcare provider if you have symptoms of an enlarged spleen, such as upper abdominal or shoulder pain.

Filgrastim can cause adult respiratory distress syndrome (ARDS), a lung problem that can quickly become fatal. Tell your healthcare provider immediately if you develop any breathing problems.

Filgrastim can make sickle cell anemia worse. If you have sickle cell anemia, make sure your healthcare provider has specialty training or experience in the treatment of sickle cell anemia before you take filgrastim.

If filgrastim is taken any time within 24 hours before or after chemotherapy, the risk of infection is actually increased. Usually, filgrastim is given the day after chemotherapy (at least 24 hours afterwards).

Filgrastim stimulates the growth of cells. There is a possibility that it may stimulate the growth of cancer cells. When used to collect stem cells for transplantation, theoretically, there is a possibility that filgrastim may increase the risk of collecting cancer cells, as well as stem cells. (TBR: We don't know, because the drug hasn't been available long enough to study the long-term effects.)

Some people taking filgrastim long-term for treating severe chronic neutropenia have developed leukemia. However, since people with severe chronic neutropenia seem to have a higher risk for leukemia anyway, it is not known whether filgrastim actually increases the risk of leukemia.

Your healthcare provider should regularly perform blood tests to measure the level of neutrophils in your blood to make sure the medicine is working and to make sure your neutrophil levels do not get too high.

Filgrastim has not been approved to be used in people undergoing radiation treatments.

Filgrastim can interact with a few other medications (see Drug Interactions With Filgrastim).

Filgrastim is considered a pregnancy Category C medication. This means that it may not be safe for use during pregnancy. Talk to your healthcare provider about the risks and benefits of the drug during pregnancy (see Neupogen and Pregnancy).

It is not known if filgrastim passes through breast milk. Therefore, if you are breastfeeding or plan to start, discuss this with your healthcare provider prior to taking the drug (see Neupogen and Breastfeeding).
http://drugs.emedtv.com/filgrasti...astim.html
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Joined Sep 2007
L3: Novice
> bubble2 121 Posts
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jgll60
01-07-2012 at 02:50 PM.
01-07-2012 at 02:50 PM.
Thanks for posting this. This is a great organization and even better that the cost is being paid for by a credit card company.
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Joined Dec 2010
L3: Novice
> bubble2 123 Posts
sleepdance
01-07-2012 at 03:40 PM.
01-07-2012 at 03:40 PM.
My set arrived 2 days after ordering, and I sent it in yesterday. Nice one OP!
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Joined Jun 2007
L6: Expert
> bubble2 1,236 Posts
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FireRockss
01-07-2012 at 04:03 PM.
01-07-2012 at 04:03 PM.
I'm gonna fb this on my family pg. I bet It will get a few of them to join Smilie
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Joined Jun 2007
L3: Novice
> bubble2 235 Posts
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sqrlproductions
01-07-2012 at 04:05 PM.
01-07-2012 at 04:05 PM.
Quote from meggs :
PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. For 5 days leading up to donation, you will be given injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream.
http://marrow.org/Registry_Member...ation.aspx

Specific Warnings and Precautions for Filgrastim
Warnings and precautions to be aware of prior to taking filgrastim include the following:


Very rarely, filgrastim may cause enlargement and rupture of the spleen. Tell your healthcare provider if you have symptoms of an enlarged spleen, such as upper abdominal or shoulder pain.

Filgrastim can cause adult respiratory distress syndrome (ARDS), a lung problem that can quickly become fatal. Tell your healthcare provider immediately if you develop any breathing problems.

Filgrastim can make sickle cell anemia worse. If you have sickle cell anemia, make sure your healthcare provider has specialty training or experience in the treatment of sickle cell anemia before you take filgrastim.

If filgrastim is taken any time within 24 hours before or after chemotherapy, the risk of infection is actually increased. Usually, filgrastim is given the day after chemotherapy (at least 24 hours afterwards).

Filgrastim stimulates the growth of cells. There is a possibility that it may stimulate the growth of cancer cells. When used to collect stem cells for transplantation, theoretically, there is a possibility that filgrastim may increase the risk of collecting cancer cells, as well as stem cells. (TBR: We don't know, because the drug hasn't been available long enough to study the long-term effects.)

Some people taking filgrastim long-term for treating severe chronic neutropenia have developed leukemia. However, since people with severe chronic neutropenia seem to have a higher risk for leukemia anyway, it is not known whether filgrastim actually increases the risk of leukemia.

Your healthcare provider should regularly perform blood tests to measure the level of neutrophils in your blood to make sure the medicine is working and to make sure your neutrophil levels do not get too high.

Filgrastim has not been approved to be used in people undergoing radiation treatments.

Filgrastim can interact with a few other medications (see Drug Interactions With Filgrastim).

Filgrastim is considered a pregnancy Category C medication. This means that it may not be safe for use during pregnancy. Talk to your healthcare provider about the risks and benefits of the drug during pregnancy (see Neupogen and Pregnancy).

It is not known if filgrastim passes through breast milk. Therefore, if you are breastfeeding or plan to start, discuss this with your healthcare provider prior to taking the drug (see Neupogen and Breastfeeding).
http://drugs.emedtv.com/filgrasti...astim.html
Why are you so hard up on NOT taking the chance to help others? Don't tell me that you also believe that vaccines cause autism.

I can't rate down your posts, but I can welcome you to my ignore list.
Reply
Last edited by sqrlproductions January 7, 2012 at 04:06 PM.
Joined Feb 2005
L4: Apprentice
> bubble2 317 Posts
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xcalbr107
01-07-2012 at 04:11 PM.
01-07-2012 at 04:11 PM.
Bone Marrow donor testimonial http://www.youtube.com/watch?v=Y2Mu2Na4ajs
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Joined Jul 2008
Helping you save $ too
> bubble2 12,090 Posts
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Pro
c2nah777
01-07-2012 at 04:22 PM.
01-07-2012 at 04:22 PM.
In for this. Registered and requested my kit.

Am I the only one who kept getting invalid or expired website certificate warnings for almost every step? Using IE8 btw. Only a totally soul-less DB would mine personal info through a site like this. I overcame my paranoia and completed the registration. After reading through all the posts here with no other complaints, I am pretty certain it is a legit site.
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Joined May 2011
L3: Novice
> bubble2 145 Posts
191 Reputation
supergp17
01-07-2012 at 04:24 PM.
01-07-2012 at 04:24 PM.
Yeah I did this last summer. I'm surprised it cost $100 to join in the past. They do it free all the time at schools, universities and pharmacies.
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Joined Jul 2010
L6: Expert
> bubble2 1,135 Posts
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Link2999
01-07-2012 at 04:24 PM.
01-07-2012 at 04:24 PM.
Thanks for signing up guys. I had a Bone Marrow Transplant myself in 2003, and luckily my brother was a 6/6 match. I had Common Variable Immune Deficiency which later progressed into Severe Combined Immune Deficiency right before my transplant (like a week before). However, some people don't have siblings to increase their match odds. I had two friends with Leukemia of of whom died when he was around 9 (the transplant technology wasn't around then or was unknown). My other friend got a 3/6 match with someone who donated but later found out that the transplant didn't take. She was gearing up for a second round when she died in her sleep. She was 14. Donating for transplants only takes a short time and doesn't hurt, but you can expect to feel tired for the rest of the day (and perhaps some soreness). Transplants themselves take months and months. I was in bed for months & couldn't even eat before I regained some of my strength. When I got out of the bed my legs were so weak I couldn't even stand up. I was 11 at the time of my transplant. After a year (arguably more with further treatment) of recovery, I was able to say that I no longer had an immune deficiency and am, to this day, still healthy.
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Joined Dec 2011
L2: Beginner
> bubble2 96 Posts
36 Reputation
meggs
01-07-2012 at 04:31 PM.
01-07-2012 at 04:31 PM.
Quote from sqrlproductions :
Why are you so hard up on NOT taking the chance to help others? Don't tell me that you also believe that vaccines cause autism.

I can't rate down your posts, but I can welcome you to my ignore list.
I think people should be aware of the risks. To say that drinking a glass of water is riskier than donating is just dumb. And not that it matters, but I did sign up for this and I also donate blood about 6 times a year. So you can go back to trolling for HP touchpads and thumbing down my posts like a 6 year old girl. I haven't said anything offensive nor have I explicitly told anyone not to register. I am just presenting another side.
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Last edited by meggs January 7, 2012 at 04:44 PM.
Joined Nov 2011
L3: Novice
> bubble2 126 Posts
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mrtroll
01-07-2012 at 04:43 PM.
01-07-2012 at 04:43 PM.
You know, traditionally, a "deal" involves some kind of transaction wherein you receive something of value in return.
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Joined Nov 2006
L5: Journeyman
> bubble2 557 Posts
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BlackFire
01-07-2012 at 04:48 PM.
01-07-2012 at 04:48 PM.
Quote from meggs :
I think people should be aware of the risks. To say that drinking a glass of water is riskier than donating is just dumb. And not that it matters, but I did sign up for this and I also donate blood about 6 times a year. So you can go back to trolling for HP touchpads
I'd agree entirely that examining the prospect of joining this registry - *in full* - is best done prior to joining, rather than after. I haven't yet made up my mind whether to join, largely because I haven't decided whether I would agree to donate if I were found to be a match. The probability of being one of the folks that sees a serious health threat/impact from being a donor may be slim, but the impact of the event on the donor's life can be quite substantial - especially if let's say you have children and are their primary bread winner, a complication from the donation procedure renders you unable to work, disability only provides a percentage of your former income, etc, etc, etc.

I can only imagine it would be as - or more - devastating to be in need of a donor, to be told by the program that a match has been found, and then told the donor won't go through with it, then to be told no match can be found.

It ought to be implicit in your decision to join the registry that you're also agreeing to actually donate, and not to join because the bar is low but not donate later because all of a sudden the bar gets higher. Thus why sharing what you understand about the risks of the donation procedure(s) is entirely appropriate in this thread. If, of course, your understanding of the risks and the information you've shared is incorrect, also good for others on the thread to correct it. Point being information - as long as it's accurate and/or corrected - is necessary, because an *informed and qualified* decision is what's being asked for when you join the registry. Imo.
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