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No. of Recommendations: 9
I received a letter today from the National Marrow Donor Program (NMDP). I've been registered as a donor marrow for roughly 13 years now. The letter prompted me to share information here about the program.

I signed up while in college during a drive to help a local young girl. Sometimes there are costs to register, in this case the costs were underwritten.

Bone marrow, or stem cells, transplants are needed for a number of illnesses such as various forms of leukemia, congenital immune system disorders, severe aplastic anemia, Hodgkin's disease, and Non-Hodgkin's lymphoma.

When I went to donate, I was saddened by the statistics I learned. I don't remember them now, but the chance of finding an unrelated donor was extremely low. I was told by staff from the local Blood and Tissue Center that the low odds were because of the small pool of potential donors. I am thrilled to see the odds have increased. From the NMDP website:

Approximately 80 percent of all patients identify at least one potential match on their preliminary search. This number has improved significantly (in 1991, it was 41 percent) because of increased recruitment efforts to add racial and ethnic diversity to the Registry. Remember, however, that not all of the 80 percent of patients who identify an identical donor at the preliminary search will necessarily go on to the transplant stage.

Not long after registering I was notified I was a potential match. I had a second blood draw to type my tissue to an even more specific level. Unfortunately, at that level I wasn't compatible.

Oddly enough, a week later I received a kit in the mail asking for a second blood draw. Because of monetary donations, they were able to select people who weren't matches yet and more specifically type their blood. Since I had just done this (I assume the patient who I preliminarily matched bore the cost), someone else was selected.

That was my only call. I assume if I'm called again, that there's a good chance I'll be a match. Through multiple moves I am devoted to keep my contact information updated with them. Once a year I get newsletter and the rare letters with changes to their policies.

I don't have a story that will tug on your heartstrings or the picture of someone you can save. Being a marrow donor is asking a lot of you; they admit it hurts. Not everyone will be eligible to donate. However, every person that registers increases the odds and gives hope.
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No. of Recommendations: 3
Argh.

For more information the National Marrow Donor Program and how you can help by registering as a donor or giving your time or money, go to the following web sites.

www.marrow.org
www.nmdp.org/
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No. of Recommendations: 1
Thanks for this reminder, Stella.

Plenty of stories on the site, too:
http://www.marrow.org/STORIES/PATIENT/CHILDREN/survivor_stories_children.html

In 1994, Nicole was diagnosed with aplastic anemia, a disease of the bone marrow. She and her doctors began a search of the National Marrow Donor Program's (NMDP) Registry for an unrelated marrow donor. But because a match was not immediately found, Nicole was kept alive for seven months by platelet transfusions every three to five days, blood transfusions every week and a continuous flow of IV antibiotics.

More:
http://www.marrow.org/STORIES/real_life_stories_idx.html

RC



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No. of Recommendations: 3
Good on ya, stellla!

I've been in the registry since...1902???...but have never been contacted. I've recently updated my mailing address because i've moved around for so long - i now need to change my name from my maiden to my married. I actually want to be contacted - i would love to donate marrow to someone. Does that make me a freak?!?

The year after i graduated from college, a very popular student needed a bone marrow transplant and his fraternity organized a bone marrow registry drive. (He eventually found a match and is alive and well 10 years later.) A friend of mine registered and was contacted a few years later BUT SAID NO. I was flabbergasted. I hate to pass judgement on such a personal decision but i can't imagine being given the chance to save someone's life and turning it down.

I don't watch "Oprah" that often but i will never forget one of her charitable giving shows that featured a man who donated bone marrow to a complete stranger. For the first time, he was going to meet the woman who received his marrow, as well as her family. The woman's father went to hug the donor and said, "Thank you for saving my daughter's life."

I still well up when i think about it. Renews my faith in humanity.

Like donating blood, it's SO SIMPLE to make a difference. What's a little discomfort and inconvenience when there's a life - even a stranger's - at stake?

snippee
the view is nice from atop this soapbox...
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No. of Recommendations: 1
<<<<Obesity:
Body Mass Index is used to evaluate weight. Donors may be deferred if obesity presents donation risk>>>>


A good reminder to stay in shape for others, not just for yourself

I have been trying to improve my diet, as excess fat is not good for platelet donation (apheresis)

<<<Also, you need to keep to a fairly low fat diet, since a high fat content in your system can clog the system or make your platelet product virtually unusable (good product is a dark yellow with a low amount of liquid, but I once had a milky white output that was extremely large in liquid (as the fat takes up quite a bit of room)). >>>


Thanks for the link, I needed to update my info (maybe the post office should include that in the address change packet)
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I actually want to be contacted - i would love to donate marrow to someone.
------------

I'm with you. Such a simple thing, albeit one with risks, and such a huge difference for someone else.
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<<<<Obesity:
Body Mass Index is used to evaluate weight. Donors may be deferred if obesity presents donation risk>>>>


A good reminder to stay in shape for others, not just for yourself

I have been trying to improve my diet, as excess fat is not good for platelet donation (apheresis)

<<<Also, you need to keep to a fairly low fat diet, since a high fat content in your system can clog the system or make your platelet product virtually unusable (good product is a dark yellow with a low amount of liquid, but I once had a milky white output that was extremely large in liquid (as the fat takes up quite a bit of room)). >>>


Thanks for the link, I needed to update my info (maybe the post office should include that in the address change packet)


Wow, that's great information. I didn't notice that on the site. Excellent point. People should lose weight/stay in shape for themselves. But having that little extra incentive can make a difference.

I'd never heard that about the platelets. Sounds like a very visible lesson about what goes on inside our bodies.

If the post office did include information in the address change packet, I hope that a lot more people would find out about the organization, if not register. And it probably would keep information more up to date.
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<<<<I'd never heard that about the platelets. Sounds like a very visible lesson about what goes on inside our bodies.>>>

One of the nurses (phlebotomists?) showed me the tubing from inside the machine after I was done once, the thing was filled with this whitish residue

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If you want a very concrete vision of what is happening when you eat animal fats, hydrogenated fats, or trans fats, have a look at blood that has been refrigerated in a blood bank. It looks just like soup in the refrigerator with that big, thick band of fat floating on top.

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If you want a very concrete vision of what is happening when you eat animal fats, hydrogenated fats, or trans fats, have a look at blood that has been refrigerated in a blood bank. It looks just like soup in the refrigerator with that big, thick band of fat floating on top.

Blech, but recommendable.

I wonder if some sort of notice would be put out on me if I asked for some of my blood to take home. I would think having that sitting in my refrigerator would be an excellent reminder to watch what I eat.

Do they skim the fat before using it? Seems like the polite thing to do. I have enough of my own fat. If I ever need a blood transfusion, I'd rather not have theirs too :-)
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As a vegetarian for 30 years, I've been told repeatedly that they love my blood!

The animals appreciate it, too.


Corrigo (donated yesterday)

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I can completely understand saying no to a blood marrow donation. It isn't without risks (as someone noticed). At different times in our lives, we may be able to live with those and at others not able. There's also time and a lot of pain involved.

I'm on the marrow registry. I hope that I am in a position to donate should I be called. However, my husband is not very enthused about the procedure. This isn't something I can do without his consent. I haven't removed myself from the donation list, because there's a chance he will support it. But until we are faced with the possibility, we can't know. So, someday, I may have to say no. But just maybe I'll be able to say yes.

Selphiras

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But until we are faced with the possibility, we can't know. So, someday, I may have to say no. But just maybe I'll be able to say yes.

Sometimes things change when you "put a face on it". On the other hand, sometimes we need people to pull in our reins for us when we go off to save the big world at the expense of paying attention to those in our own small worlds.

;-D
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I can completely understand saying no to a blood marrow donation. It isn't without risks (as someone noticed). At different times in our lives, we may be able to live with those and at others not able. There's also time and a lot of pain involved.

I also wanted to remind people that sometimes saying "Yes" isn't a choice. Enrolling in the cord blood registry was pretty popular at college. Now, a decade later, I'm ineligible to be a donor because of medical problems. I don't think that people immediately think, when they're diagnosed with chronic illnesses, "Gee, I should call the bone marrow registry and have my name removed."

-- Laura
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Plenty of stories on the site, too:
http://www.marrow.org/STORIES/PATIENT/CHILDREN/survivor_stories_children.html


When I got my Marrow Messenger this month I flipped through it - and when I got to the last story (4th one down on the link) I said "Oh my goodness- it's Perry"
I KNOW this family. The mother and my sister were college roommates. And I heard all the turmoil they went through trying to get a donor and how tough it was pretty first hand.
I would not wish that on anyone.
I am excluded from donating blood, but would still do the marrow in a hot second if I matched.

peace & marrow
t

who keeps her info current no matter how often she moves
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I am excluded from donating blood, but would still do the marrow in a hot second if I matched.

<sigh>

I got my copy of Marrow Messenger, and had to send them a message saying I'd have to be removed for health reasons.

And I was really hoping that someday they'd call.

Nancy
hasn't checked into giving blood lately, but suspects it might be the same story.
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hasn't checked into giving blood lately, but suspects it might be the same story.

Can't remember if I posted this but: I did check recently after being told no since 1994. I'm not in their database as a turn down candidate - so back on Nov. 15 I was permitted to once again donate blood. Wish I had pursued donating sooner.

Odee
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Nancy
hasn't checked into giving blood lately, but suspects it might be the same story.


This is because you've had cancer? My mom was told she has to wait 5 years before they'll let her donate again.

HTH,

Jan
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hasn't checked into giving blood lately, but suspects it might be the same story.

Donating blood is more exclusive than donating marrow, so that is likely the case. You may still be able to donate plasma if you have the time.

peace & giving
t
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You may still be able to donate plasma if you have the time.

Or perhaps they'll take your blood for research or other uses - could always ask.

Odee
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