How do you get "typed" to donate bone marrow?

IrishCoffee7

I already an organ donor and I believe very strongly that everyone should be (not starting a debate out it, just my opinion).

But a couple of you mentioned already being on the bone marrow donor list...how do you go about that?  Is there cost involved?  Do you have to take time off work...to recover etc?  Or is it a simple procedure?

missymo

https://www.marrow.org/

 

 

sillypit

Just to be on the donor registry it's a cheek swab.  If you actually donate however there is significant pain and recovery involved.

LCB34

This is what I have learned in the past 24 hours.

Getting typed is expensive and insurance on covers it if you are in a situation where you need the full typing (Kate, Alex, and I will all be typed this week).

However, you can get a cheek swab as a prelim typing that will add you to the national registry.  The detailed testing doesn't come in to play until they suspect you may be a match, and you agree to pursue the donation.  I believe there is a cost to be listed on the national registry but, don't quote me on that.

www.marrow.org has tons of information. 

emilydholmes1

sillypit:

Just to be on the donor registry it's a cheek swab.  If you actually donate however there is significant pain and recovery involved.

This is not true. There are two ways a donor can give marrow. The majority of donations are not even surgical, it is done through a blood stem donation.

The other is surgical but is an outpatient procedure and most donors go home the same day.

There are obviously always side effects or complications that could arise but there is usually NOT significant pain OR recovery time involved.

All of this is on the marrow.org website.

KJmashup

I had checked into being put on the registry a couple of weeks ago. I was inspired to do so because of a post Hippo made. I went to the website and began the process, and then I was stunned and hurt to see that I am forever ineligible due to having had to take blood thinners in the past.

I am so glad you're putting this on your to-do list, Hecky. (((HUGS)))

 

emilydholmes1

sylwill:

heckysue:

Thanks ladies. 

Putting this on my to-do list. 

Right now, it's about $52 to join the registry.

Hmm. I don't know where you saw that but I joined a couple of months ago and it was completely free. They ask if you want to donate something but it is free to sign up.

torii

LCB34:

This is what I have learned in the past 24 hours.

Getting typed is expensive and insurance on covers it if you are in a situation where you need the full typing (Kate, Alex, and I will all be typed this week).

However, you can get a cheek swab as a prelim typing that will add you to the national registry.  The detailed testing doesn't come in to play until they suspect you may be a match, and you agree to pursue the donation.  I believe there is a cost to be listed on the national registry but, don't quote me on that.

www.marrow.org has tons of information. 

I'm on my phone so I can't bold a certain part but there is no cost to be on the national bone marrow list. The rest of the info is exactly what I was coming on here to say. A simple cheek swab is taken from four different places. The registry will contact you if you are a match for somebody and at that time more detailed testing will be needed.

missymo

sylwill:

heckysue:

Thanks ladies. 

Putting this on my to-do list. 

Right now, it's about $52 to join the registry.

That's odd.  It was free for me. My office had a representative of the registry come in and collect info and swabs from anyone who was interested in joining.  Perhaps someone paid the $52, but I didn't.  If you notice a local business is having an "event" like that (ours was open to the public) then it would probably be free to join that way.  

LCB34

emilydholmes1:

sylwill:

heckysue:

Thanks ladies. 

Putting this on my to-do list. 

Right now, it's about $52 to join the registry.

Hmm. I don't know where you saw that but I joined a couple of months ago and it was completely free. They ask if you want to donate something but it is free to sign up.

I

I think there are different registries - but I do know that something (and one of the registries) does have a cost associated with it.  I am trying to navigate the site to better understand as so many people have asked how they can join.

I'm also hoping the transplant team can help me understand a bit more.

 

emilydholmes1

LCB34:

emilydholmes1:

sylwill:

heckysue:

Thanks ladies. 

Putting this on my to-do list. 

Right now, it's about $52 to join the registry.

Hmm. I don't know where you saw that but I joined a couple of months ago and it was completely free. They ask if you want to donate something but it is free to sign up.

I

I think there are different registries - but I do know that something (and one of the registries) does have a cost associated with it.  I am trying to navigate the site to better understand as so many people have asked how they can join.

I'm also hoping the transplant team can help me understand a bit more.

 

Ah gotcha. Well through marrow.org, which is what I used, I did not pay anything. So people should at least start there because I know that one is free.

kimmyt09

sylwill:

emilydholmes1:

Ah gotcha. Well through marrow.org, which is what I used, I did not pay anything. So people should at least start there because I know that one is free.

According to their site, it was free for you because they had enough donations then. Right now, they need people to pay to register.

I just joined on Be the Match- they asked for a contribution, but payment wasn't obligated.  

smucha10

I would recommend looking for a drive in your community.  Usually, it will be free to join because someone is sponsoring it.  I work for a leading bone marrow transplant hospital and we frequently have events like this. 

ZoeyMarie

I just went and registered on the link above. There was no cost to getting the kit up front, though they do ask for a donation. It's also full of information as to what to expect if you're a match, etc.

It's quite simple to do.

emilydholmes1

ZoeyMarie:

I just went and registered on the link above. There was no cost to getting the kit up front, though they do ask for a donation. It's also full of information as to what to expect if you're a match, etc.

It's quite simple to do.

Yeah Sly I get what you are saying but I still think you can join without paying even today. Go to the website... it does not ask for payment.

But if anyone can, contributions are appreciated. I have monthly amount taken out that goes straight to marrow.org.

Mrs.M317

emilydholmes1:

sillypit:

Just to be on the donor registry it's a cheek swab.  If you actually donate however there is significant pain and recovery involved.

This is not true. There are two ways a donor can give marrow. The majority of donations are not even surgical, it is done through a blood stem donation.

The other is surgical but is an outpatient procedure and most donors go home the same day.

There are obviously always side effects or complications that could arise but there is usually NOT significant pain OR recovery time involved.

All of this is on the marrow.org website.

My best friend did a blood stem donation.  She was out of work for 2 weeks to prep and spent every day for a week in the hospital getting medication and being monitored.

I would have to say she was in significant pain, and while there was no "recovery" time she did have to have 2 weeks out of work approved.  This was recommended by the doctor doing the transplant. 

It is a significant commitment to make.  I think it's an important one for people who feel comfortable being a possible match, but you should definitely research both procedures before you get added to the registry.

I'm impressed at how many people are inspired to do this just by LCB's DD  

laura3462

I was on the registry since 2000. I was called twice for more blood work to see if I was a close match for 2 different patients. In  2002, after additional testing I was not an exact match for 1 patient but in 2009 I donated my stem cells for a lady who had cancer. It wasn't too painful. You have to take Nupogen for 7 days prior to the collection. This increases the amount of stem cells/red blood cells in your blood stream. As a result your bone marrow cavities swell and put pressure on your bones. On day 6 & day 7 of the drug I had achy bone pain but tolerable. On collection day an hour into the 3 hour collection my bones felt better as they removed the cells.

It was a nice experience over all. My mom died of cancer in 2008 so it was nice to be able to help someone else. The women I donated for is a marine biologist in her 60's and we email occassionally.

 

emilydholmes1

Mrs.M317:

emilydholmes1:

sillypit:

Just to be on the donor registry it's a cheek swab.  If you actually donate however there is significant pain and recovery involved.

This is not true. There are two ways a donor can give marrow. The majority of donations are not even surgical, it is done through a blood stem donation.

The other is surgical but is an outpatient procedure and most donors go home the same day.

There are obviously always side effects or complications that could arise but there is usually NOT significant pain OR recovery time involved.

All of this is on the marrow.org website.

My best friend did a blood stem donation.  She was out of work for 2 weeks to prep and spent every day for a week in the hospital getting medication and being monitored.

I would have to say she was in significant pain, and while there was no "recovery" time she did have to have 2 weeks out of work approved.  This was recommended by the doctor doing the transplant. 

It is a significant commitment to make.  I think it's an important one for people who feel comfortable being a possible match, but you should definitely research both procedures before you get added to the registry.

I'm impressed at how many people are inspired to do this just by LCB's DD  

That is true.You should always make sure you know what you are getting into before you sign up and be as knowledgeable about it as you can.

But MOST people do not have significant pain, your friend was an exception. I have not donated yet but know several people that have and while there was discomfort and time off from work, they did not describe it as painful.

Mrs.M317

emilydholmes1:

That is true.You should always make sure you know what you are getting into before you sign up and be as knowledgeable about it as you can.

But MOST people do not have significant pain, your friend was an exception. I have not donated yet but know several people that have and while there was discomfort and time off from work, they did not describe it as painful.

That's good to know.  She had a very difficult experience, but amazing at the same time.  She ended up getting letters from the family of the recipient.  She's always said she would do it again in a heartbeat.

TAMLVSCARL

kimmyt09:

sylwill:

emilydholmes1:

Ah gotcha. Well through marrow.org, which is what I used, I did not pay anything. So people should at least start there because I know that one is free.

According to their site, it was free for you because they had enough donations then. Right now, they need people to pay to register.

I just joined on Be the Match- they asked for a contribution, but payment wasn't obligated.  

Me too.

torii

sylwill:

torii:

LCB34:

This is what I have learned in the past 24 hours.

Getting typed is expensive and insurance on covers it if you are in a situation where you need the full typing (Kate, Alex, and I will all be typed this week).

However, you can get a cheek swab as a prelim typing that will add you to the national registry.  The detailed testing doesn't come in to play until they suspect you may be a match, and you agree to pursue the donation.  I believe there is a cost to be listed on the national registry but, don't quote me on that.

www.marrow.org has tons of information. 

I'm on my phone so I can't bold a certain part but there is no cost to be on the national bone marrow list. The rest of the info is exactly what I was coming on here to say. A simple cheek swab is taken from four different places. The registry will contact you if you are a match for somebody and at that time more detailed testing will be needed.

There is a cost of up to $100 to register with the National Marrow Donor Registry. It's $52 right now because of donations by other people. Sometimes it's free because they have enough donations to cover a registration.

Thanks for the info. I had no idea there were multiple registries. I just checked my wallet to look at my card and mine is Be the Match Registry, operated by the National Marrow Donor Program. I did not pay anything at the time I signed up two years ago.

emilydholmes1

sylwill:

This is what I get:

That is so weird other people joined today and it didn't ask for money and it is asking you to pay. Is it like every so many people have to pay?

Definitely odd.

thekrikorians

I used to work for a Blood Donation Center & there host multiple free marrow drives a year.  You can try contacting the Ronald McDonald or several childhood cancer foundations as well, if there is a local patient in your community searching for a match, the marrow association often has marrow drives to help find a match & to raise awareness.  Just a head up, a huge percentage of people on the registry are of Caucasian decent & genetic origin usually affects matches, so if you're not Caucasian or are mixed,  your marrow is especially needed.

JuneNC2008

I just signed up and it did not cost $52. I was willing to pay; however, it only asked for a donation which I donated. That is odd. I hope Little Kate finds a match quickly.