Post # 1
I signed up to be on the National Marrow Donor Program yesterday. I am really excited to be part of this. I was wondering if any bees have donated marrow or peripheral blood stem cells. What is it like? Have you done it through a registry like this?
If anyone is interested in the program, by the way, the website is http://www.bethematch.com
Post # 3
My cousin did this and he was a match 🙂 he felt awesome being able to do it for someone.
Post # 4
@MrsPom: I’m pretty pumped. I should be getting the swab kit in the mail soon and I’m really hoping I get a call someday.
Post # 5
I heard it was painful but that is JUST word of mouth. I am to scarred to do it myself but commend anyone who does good like this.
Post # 6
@Otulyssa: I’ve heard this too (like SUPER painful). But I give kudos to anyone selfless enough to do it. I would do it for a family member/friend but that’s probably it since I’m such a chicken about pain. 🙁
Post # 7
I am on the registry, but haven’t been a match in the 5 years I have been on. I worked in Oncology for 4 years so I know quit a bit about the procedure its self.
Previously they would take the marrow out of your pelvic crest similar to when they do a bone marrow biopsy (only they would take out a much larger amount). Now most often it is similar to donating plasma. They put a large IV in your arm and filter the marrow out. Of course there are still side effects, but not as bad as it use to be. It really is such a great cause:)
Post # 8
I found the page from the National Marrow Donor Program that explains the donation process. They say marrow donation is done under anesthesia, so you don’t feel it.
Post # 9
@strawbabies: It is very painful after the procedure for a few days. They do give prescriptions for pain medications though.
Post # 10
@rubybride718: Just like you to know after mentioning this it reminded me how awesome it was he was a match and I went on and signed up myself 🙂 should be getting my kit in like 2 weeks also!
Post # 11
Fortunately I have a pretty stong threshold for pain, although I am an absolute baby thinking about it. I am the one who is shaking and anxious when getting blood taken and then as soon as they put the needle in, I’m like “wow, that didn’t hurt at all”
@MrsPom: Yay! That’s awesome
Post # 12
I was called as a match in January of this year, after being on the registry for 8+ years. Because I submitted blood when I signed up, rather than a swab, they were able to already have done some of the secondary testing and identified that I was the best match. Unfortunately, in March or so, I received a letter that my recipient no longer need the transplant “at this time.” That can mean a couple of things.
I was surprised at how SLOW of a process it was once I got called. Like I said, I already had submitted blood so got to skip some of the intermediate testing once you’re identified as a possible match. I had to fill out a pretty extensive health survey and there was a coordinator assigned that was my contact point. She said it could be anywhere from a couple of weeks to a couple of months after that that I’d hear more, and the next step would be even more testing.
So I haven’t donated, but I would for sure in a heartbeat. I was actually pretty excited about it. They tell you about the person you may be a match for (age, gender, and disease). Mine was a 70+ year old woman with some form of cancer.
I’m so glad so many people are interested in this and they’ve made the sign up process so much easier. It’s especially important for more minorities and international folks to join the registry – those are much harder matches to make.
The letter they sent did say that I’d be more likely to be called again in the future because of the additional screening now on my record. I truly hope I can be a match someday.
I have heard mixed things about the process of donation – but really, it doesn’t matter to me. I’d go through either procedure, and both have pros and cons. The apherisis seems more appealing but having flu symptoms vs. recovering from surgery doesn’t seem that appealing either. It really is based on the needs of the patient.
Blood, organ, and other vital donations are a big passion for me, so to see the process in action was so rewarding.
Post # 13
I’ve been on the list for 4 years now? I think? I gave a cheek swab at some event in undergrad. I got called for “additional screening” at the beginning of this year and really just had to phone them and confirm that I was still interested in being a match. I did not receive any extra information or give blood. I haven’t heard anything since.
I would absolutely donate and hope I get called someday so I can help someone! But it does seem to move veryyyy slowly for most of us.
Post # 14
@Kurzweil: It’s a big passion for me, too. The red cross has me on speed dial for blood donations. hehe
Post # 15
I’ve been on the registry since 1994. No match yet.
Post # 16
How great of you to join!!! I actually work with a Bone Marrow Transplant Department. I am one of the transplant center coordinators that actually gets to pick the unrelated donors from the National Marrow Donor Registry for our patients. I also work closely with the donor center here in our state and they are the ones that contact the donors when they are a match and that meet with the donors when they are donating and follow up with them.
You guys are correct that there are 2 different ways of donating. The patients physician decides which method is best for the patient. Our physicians here generally always prefer peripheral blood stem cells rather than bone marrow from your hip. The peripheral blood stem cell donation is about a 5 hour process similar to donating platelets. There is a medication/shot you have to take before the donation that helps get enough stem cells into your blood to give to the patient. This medication can affect everyone differently. Some people feel achey and a little tired and some people feel nothing! So it completely varies from person to person. For the marrow donation you are completely put under so you will feel nothing during the procedure at all. After the procedure it will basically feel like you have a bit of a stiff back. I have actually been a leukemia patient and I have had multiple bone marrow biopsies and the pain you feel after these is similar to what a donor feels after a donation. It just feels like your back is stiff and you have been in the same position for a long time. This soreness gets better every day and you generally won’t notice anything in a week. This soreness also depends on the person. Some people will not be sore at all! Most people after they donate will tell you that it’s not as painful as everyone says and most donors would do it again in a heartbeat.
It is a great way to help people. Just imagine, there are patients daily waiting to find a perfect match and it only takes one person to match to save this patients life. This product is literally a life saver. Many patients who get bone marrow transplants don’t have another choice. That is the only way they will be able to beat their disease. I strongly urge everyone to join. After my diagnosis of leukemia I actually almost needed a transplant but luckily my doctor decided I was getting better without a transplant. But, in my case, I did not have a full matched donor, so this is very dear to my heart. If you have any questions at all go to the http://www.bethematch.org website or feel free to PM me or call the national program. It’s one of the easiest ways to save a life!