Does Anyone Know Anything About Bone Marrow Donation?

I have heard there can be some discomfort - see responses below. But this is why I'm writing you - I know of 4 very close relatives and friends whose lives where saved by bone marrow donation. One friend's little boy couldn't find a match with his fraternal twin, older brother, nor any other family or friend - no one except a man in Germany was a match for him. And it saved his life.

I had a professor who spoke about the need for certain ethnic/racial groups to increase their participation. His niece died because there was something particular in her make up that was most common in Latino and Hispanic people - but there were few people on the registry with similar make up. He spoke about the need to reach out beyond the standard groups of donors.
Many people are never called because they are not a match for the right person - many people are not saved because there isn't a match. That information alone was a huge factor in my family's decision to register.

Hi, I signed up for it many many years ago, like 15 and I've never heard a thing from them. Maybe I have to resign up, but I still have my card in my wallet. Never been contacted. So, unless my marrow is bad or something, lol, I wouldn't think they'd contact you too soon.
B.

Hi M.
I tried to once. First you have to have your blood drawn (they separate the platelets with a machine so I think it comes out one arm vein and goes through the machine and then back in the other arm if I remember correctly) I hadn't been a regular blood donor (which would have been a good thing) and I had taken an Aleve (which was brand new at the time) so I blacked out and almost fainted- I think there was a bubble where she put the needle. Any how with all that going against me I wasn't able to do it. That was just the first process to see if I had a match....
If they find one I believe there is some pain involved- it isn't totally painless. But imagine being the one to save a life......

I was a bone marrow donor to an anonymous 17-year-old girl with leukemia. I signed up for the registry in 1992, and nearly ten years later I became a match.

The staff and doctors were my advocates, and we went through a number of screenings to make sure I was healthy enough, both physically and mentally. I never felt pressured, and trust me -- they are darn thorough with their exams!!! They made sure I was doing this because I wanted to, not out of obligation.

In fact, it's completely anonymous in the US for at least a year (or at least it was when I donated), even if both recipient and donor want to be open. After that, it depends on the situation. The bone marrow organizations do this in part so that the donor does not feel obligated. (In my case, the girl I donated to lived in a country that never allows contact, so I never got to know anything about her, except for the thank-you letter she sent.)

I'm *so* glad I was able to be a donor, but as you know, it's a personal decision. I'm happy to answer any questions via email. Also, I saw one person here talked about hearing how painful it is. I liken it to childbirth; it's painful for a short time, but the rewards give you so much joy that it's worth it. Best wishes, and if anyone else here is thinking about donating, I strongly encourage you to look into it.

M.,

Awesome question and I understand your feeling of obligation.

There are two types of marrow collection....marrow is also referred to as stem cells - the reason being that bone marrow is liquid and is made up of stem cells that grow up to be, among other things, red cells, white cells and platelets. The marrow is liquid and actually looks like blood - and it is truely a life saver.

One is a procedure where they extract the liquid marrow from your lower back - usually they give you anesthesia for this. You may hear people talk about the huge needles they use and, yes, they are huge but you do not have to see them. After this procedure, you will have a sore lower back much like having taken a hard fall on the ice. Usually the soreness is gone by one month and the marrow would have also replaced itself by then.

The other procedure is a peripheral stem cell one similar to when you donate platelets - it is a two armed process where excess stem cells are drawn off from your blood and the remainder returned to you via your other arm. This collection can last one or two days and is an outpatient type. To produce the excess stem cells, you are given filgrastin shots (if not this currently, something similar) for four days prior to the collection. This drug tells your marrow to flood your circulatory system with stem cells in preparation for the collection. The downside of this type of donation is that as your marrow is flooding your system, your bones ache because of the work they are doing. You can experience bone achy pain (I think they let you use tylenol for it) and fatigue similar to feeling like you are coming down with the flu. Once the actual collection starts, you start to feel better and could possibly feel absolutely normal once the collection is done. If not feeling back to normal right away, you should be fine shortly (very shortly) thereafter.

Being a young woman with three children, you may not be the first choice as a donor since when you are pregnant, you create antibodies which can transfer with your marrow to the patient. This is why they ask you how many pregnancies you have had, not children. That being said, you should be aware that if you are called, you may very well be the only donor. They won't tell you that. In fact, you could be, for example, one of five that they call for more testing. So, if you get called again, it will be for more testing for compatibility. And, if that looks good, will be called for more tests, etc. If all is well, you will be asked to donate.

This is an incredible opportunity and I look at it is that if I am the one person that can save someone else, they would also be the one person that could save me if the situation were reversed. Quite powerful.

There is a saying, and I am paraphrasing here, to the world you are one person but to one person, you are the world.

If none of this scares you off, go for it. You may never be called but then again, you might.

L.

I signed up years ago during a bone marrow drive for someone in our community who needed bone marrow. At another time one of my co-worker's spouses received bone marrow. She went to the west coast for the procedure. It helped to save her life. She received bone marrow from one of her family members.
I was called once to have my blood checked again for a possible match for bone marrow donation. I was close, but there was another donor who was a closer match. Therefore I have never donated, but have heard it is painful to donate, as a previous writer said. I receive a card from bone marrow donation center from time to time. If you sign up and decide later you do not want to donate you can remove your name from their lists.
I know besides being a match, you also have to be healthy, and meet certain standards for donating (this helps to protect your health.)

Hi M.

I don't usually respond to many but this is an issue very close to my heart. My 9 year old son is a cancer survivor who has not needed a bone marrow transplant but if he were to relapse again that would be his only options. I feel strongly that people should register, registering is a very simple process and though donating might mean schedule adjustments but they have made it as safe as medically possible for the donor and more importantly it is a life you would be saving.

I have thought about the same thing. Trying to get my company to do a drive here to get more people in the registry database.

Here is a great site to refer to:
http://helpgiovanniguglielmo.org/default.aspx

He was a little boy in Boston who was helped by the donation registry. And they list a lot of bone marrow drives so maybe you can find one in your area. I guess the first thing they do is swab your mouth and then they enter the info into the registry in hopes of a match one day. Good luck!

I don't know for sure, but from what i hear it is quite painful and takes some recovery time as well. I'm interested to see what others say. It's nice to know you would even consider helping others. Don't see that too often now.
:-)

I signed up last year when they were offering it for free. First of all the testing is super simple. Just a few swabs of your cheek. They send you all the stuff in the mail and you send it back. Now I've never been called to actually donate. The actually donation of the bone marrow is no walk in the park. I mean it hurts and you will probably by down for a day afterwards. But as far as it being dangerous for you it's probably only slightly more dangerous than donating blood. It's a great thing and I know the reason I signed up was because my friends 4 year old daughter had Cancer. If I could help a child survive all that chemo and stuff then it's well worth it to me. You do have to meet certain guidelines too in order to actually donate. But I think the benefits of giving life way outweigh any sort of consequence.

Hi M.,

I applaud your consideration to become a donor - it does save lives and gives people so much hope. I plan on signing myself up too but haven't done it yet (the places that I found actually charged money and I was hoping that I could find one that was free). Anyway, from my understanding, it's not very painful now - not much more than basically getting your blood drawn. It used to be painful - I think they actually used to take a graf from the marrow in your leg (and that was why there was a long recovery time). Advances in medicine have made it so it's basically a blood transfusion for both parties. From what I understand, the worst part for the donor is the inconvenience (I think you have to get several shots within the few weeks before the actual donation to increase your body's marrow or blood production). I've also read that sometimes the shots can make people nauseous but that it goes away after the donation. Good luck!

I think it's great that you want to register but ask your doctor or local donor center which registry you should use. You need to have blood drawn (1 small tube) so you can be typed and matched - there's no point to a registration without this, obviously.

If you are called, more tests will be needed and risks will be explained. Donors have marrow drawn by needle from the hip bone - it is uncomfortable for a while with soreness and sometimes bruising, with a slight risk of infection. These are manageable side effects. It's not like giving blood but it's not like donating an organ either. It's a great gift. You should be inclined to give if you are going to register but you cannot be forced to do so when the time comes. Just ask yourself, what is you or a loved one needed marrow? I lost 2 friends because a good match couldn't be found (one case) and because the donated marrow didn't "take" (other case). I registered 15 years ago and have never been called but I think it's good to be prepared mentally. I just think, what if my son needed it, and that generous match never signed up? Good luck working this through.

I have signed up also a few years ago and nothing... It is extremely important for minorities to sign up for marrow donations since we are severly underrepresented and anyone who needs a donation will be less likely to have a match in the system. It is painful (I have heard) I mean they are drilling holes into your hipbone to harvest the marrow. But you would be saving a life. Unless you are pregnant at the time I really can't see saying that it is too inconvenient to be laid up for a week or so.

That is just me though. My mom died of cancer at 42 so I am a bit emphatic about the issue.

I have been on the list for nearly 20 years, never called, but would want everyone available on that list if my kids/relatives needed a match. If selected, there are some risks, but predictably it is primarily "just" a hospitalization and hip pain. Doable for saving someone's life, I justify. Kudos for even considering!