Be the Match Emailed

[Susie]

So awesome! I hope the match works out!

I have not been contacted yet. Maybe someday.

[mbcdefg]

Oh wow! Good luck, I hope it all works out for the best!

[insominac]

Exciting! Good luck

[orangeblossom]

That's awesome.

I just got my email to confirm if I still wanted to be in the registry. I do, but I'm not sure if I'm a good candidate anymore. I have chronically low white blood cells (it doesn't cause me any harm), it's just my norm, so I need to see if that's an issue.

[Deleted]

They called me a couple months ago. I did the testing but they said they found a better match for the guy. Good luck!!! I hope your person finds a match soon.

[cjeanette]

So cool!

[krisandgrace]

What an amazing gift to give someone, I hope it works out that you or someone is a match for him! I've also been on for years and have never been contacted.

[purrbox]

Awesome! Sounds like you and my DH are about in the same process right now. He was contacted about a week ago. So I guess it's the waiting game now.

Fingers crossed you end up being a match!

[SusanBAnthony]

My uncle received a transplant during his fight for cancer. He was very lucky to have three extremely close matches, so they ended up choosing more from convenience (geography). Sadly, he died from complications from his transplant.

Thank you for being on the registry!

[mellymel]

@songforyou, that's so awesome! I hope you are a match and have this awesome opportunity.

I was contacted last May as a potential match, but then it never went anywhere from there. I am hoping the patient found a better match than me. I have been on the registry since 1998.

My Dad had a bone marrow transplant in August 2011. Sadly, he did not survive his and I miss him every single day. But bone marrow transplants can be such a miracle and I remain a strong believer in the process.

For those interested in joining the Be the Match registry, it's so easy. Click here: bethematch.org/Join/Join_Now/Join_Now.aspx

[mellymel]

Sept 27, 2013 14:43:03 GMT -5 SusanBAnthony said:

My uncle received a transplant during his fight for cancer. He was very lucky to have three extremely close matches, so they ended up choosing more from convenience (geography). Sadly, he died from complications from his transplant.

Thank you for being on the registry!

I'm sorry about your uncle. I lost my Dad 2 years ago the same way - complications from his bone marrow transplant. 

[purrbox]

Sept 27, 2013 14:44:27 GMT -5 mellymel said:

@songforyou, that's so awesome! I hope you are a match and have this awesome opportunity.

I was contacted last May as a potential match, but then it never went anywhere from there. I am hoping the patient found a better match than me. I have been on the registry since 1998.

My Dad had a bone marrow transplant in August 2011. Sadly, he did not survive his and I miss him every single day. But bone marrow transplants can be such a miracle and I remain a strong believer in the process.

For those interested in joining the Be the Match registry, it's so easy. Click here: bethematch.org/Join/Join_Now/Join_Now.aspx

I'm so sorry for your dad.

And I second anyone and everyone registering. It costs nothing and is as easy as giving a quick cheek swab.

[winnied]

Awesome! My mom was a match for someone in her 20's. I hope I can be that helpful some day.

[purrbox]

Sept 27, 2013 14:43:03 GMT -5 SusanBAnthony said:

My uncle received a transplant during his fight for cancer. He was very lucky to have three extremely close matches, so they ended up choosing more from convenience (geography). Sadly, he died from complications from his transplant.

Thank you for being on the registry!

So sorry for your uncle.

[gmail]

Sept 27, 2013 14:11:24 GMT -5 @songforyou said:

They think I may be a match for someone!  Three years after registering lol.  An older man.  I am in the process of getting scheduled for the final testing.  I'm nervous but excited .

My H was a match for someone 2 years ago. Let me know if you have questions!

[rosiedozie]

Wow! I hope that your testing goes well and that a great match is found for him!

[kimibrighteyes]

This is awesome!

I have a confession. It took me a few minutes to realize that you were not talking about a dating service and I was very confused since you talked about being matched up with an older man (since I thought you were married and also smart and pretty, so why would you wait years to be matched up by a dating service)

[greencrayon]

Awesome!

[Norticprincess]

Sept 27, 2013 14:20:45 GMT -5 orangeblossom said:

That's awesome.

I just got my email to confirm if I still wanted to be in the registry. I do, but I'm not sure if I'm a good candidate anymore. I have chronically low white blood cells (it doesn't cause me any harm), it's just my norm, so I need to see if that's an issue.

Emailing them to update health info is very quick. I had to take myself off the registry when I was dx. I'd been on for 10+ years at the time. Never got a call. Figured out how rare my HLA set is once we started my search. Got a highly amusing, at least to me at the time, email about how sorry they were that they had to remove me from the registry with this updated medical information.

I'm so sorry for those of you who lost people going through this.



@songforyou Thank you for taking the time to go in for the extra testing. The high resolution testing looks for the best match. Some centers go up to 10 or 12 points to match. The basic registry matching is lower 6 or 8 depending on type. They pull the highest probability of matching out of the preliminary matches and send requests for farther testing to them. I didn't have a good match on the registry, they did send requests for farther testing on 4 of my mismatched matches before I switched centers and used my sister for a Haplo match transplant. Each center has slightly different preferences for donor type (male vs female) Male donor tends to have a slightly lower gvh risk after vs a female who has had children etc. They like younger donors vs older donors as they have more stem cells. They normally go 100% sibling match, 100% MUD, then it varies by center on mismatched, by how many mismatches, unrelated donor and haplo related donor.

Some centers like peripheral blood collected stem cells - where you get Filgrastim/Neupogen shots for a few days before they hook you up to the aphersis machine for 1-2 days for 4-8 hours - all depends on what your cell counts are and what volume is needed for the patient. This method is pretty painless for the donor, other than the bone pain from the shots -- benadryl or claritan are your friend if they clear you to take them.

For mine they wanted actual bone marrow, my sister had to have 2 L of stuff removed from her hips. She still loves me and says she'd do it again. You are put under general (at most places) for this so no pain while it is going on. They take a unit of your blood before surgery to give you back. They give you the good drugs for after surgery. Ice packs and a heating pad later in the week make it go away pretty well.

My sister had a bit of a hard time with the recover, but her sacroiliac joint was injured and it isn't a common

[gmail]

Sept 27, 2013 15:41:31 GMT -5 @songforyou said:

Sept 27, 2013 15:18:48 GMT -5 gmail said:

My H was a match for someone 2 years ago. Let me know if you have questions!

How cool .  Thank you, I may take you up on this!

Sure! Just PM me.

He did the donation that was a few shots of medication, and then they cycled out his cells over the course of 8 hours - rather than the surgery.

[af1212]

Sept 27, 2013 14:11:24 GMT -5 @songforyou said:

They think I may be a match for someone!  Three years after registering lol.  An older man.  I am in the process of getting scheduled for the final testing.  I'm nervous but excited .

I was a match and donated when I was 20 - also for an older man.  He was a 53 year old and at my update about him (all through the National Bone Marrow Donor Program) he was still doing great   

Congratulations - I know you must be having lots of emotions about this.  It is a pretty lengthy process, but very straightforward and well explained.

Feel free to PM if you have any questions or want to talk about it.

[redredwine]

That's great!!! I've been on the registry for about 6 years. I get a little nervous/excited when I see emails from them, but it's always Newsletters (and I'm assuming they'd call)

Thank you to everyone who's registered, too!

[af1212]

@songforyou - I should have read the rest of the responses before I replied!

I did a stem cell donation instead of bone marrow.  I'm not sure which you are in the running for.  It was over 2 days, 6 hours each day.  For a week beforehand got daily injections of neupogen to increase my cell count.  That was pretty uncomfortable, but nothing that I couldn't manage.

The actual donation itself was painful (especially the second day), and I have some suggestions of things that I would do differently if I were to be contacted again which I'm happy to share with you if you are interested.

Good luck as you make your way through the process - it was a really special time for me and I'm so happy I was a part of it.

[mellymel]

Sept 27, 2013 15:48:43 GMT -5 redredwine said:

That's great!!! I've been on the registry for about 6 years. I get a little nervous/excited when I see emails from them, but it's always Newsletters (and I'm assuming they'd call)

Thank you to everyone who's registered, too!

I actually got an email first when I was a match for someone. So, they don't always call!

[KaraOrNot]

Exciting! I just got an email indicating that I am officially on the registry.

[clementine]

Sept 27, 2013 14:31:21 GMT -5 @songforyou said:

Sept 27, 2013 14:25:23 GMT -5 RockNVoll said:

Wow, that's exciting, good luck! I've been on the registry since the mid-90s and have never been contacted.

Whoa, you're an OG lol.  Your type must be insanely rare!

I've been in since '97 and never been contacted either. I always thought the likelihood of being a match was much lower than not. So cool that so many of you have been contacted!

[littlemisssunshine]

Just registered! I'm glad I read this post, I had no idea this registry existed.

[StJess80]

I registered when we lost saratonin, but I've never been contacted. I guess it hasn't been all that long. Good luck!

[winnied]

This thread also reminded me to update my contact information. Huzzah!

[Deleted]

Oh, that's a bummer! At least you tried