Monday, July 03, 2006

FAQ

I had to post this. Our dear friend Vince has been amazing as one of our "point people." He has just gone above and beyond in keeping people up to date and helping us in every way possible. Keep him in his prayers because he's taking boards next week!!!!!

Anyway, he was very helpful in getting some info about the national marrow registry. Obviously, Joe and I are now big advocates of the registry! Here's the info he collected...(Thank you Vince!)

"i received this information from three main sources; more detailed information can be found on these sites:
www.marrow.org - the National Marrow Donor Program website
the Central Blood Bank in Pittsburgh412-209-7131 (they are very helpful in answering any questions you mayhave)
www.bonemarrowtest.com (private lab; see FAQ below)

Here are some Frequently Asked Questions:
- How can i register for the National Marrow Donor Program (NMDP)?
- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program?
- If i am chosen, how will the stem cells be collected?
- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

FAQ answers:
- How can i register for the National Marrow Donor Program (NMDP)?
You can register at any local Central Blood Bank branch; there aremany in the Pittsburgh area. call their number (412-209-7131) or lookonline at www.CentralBloodBank.orgThey will pay for the registration fee if you are willing to donatesome blood at the time of your cheek swab. Otherwise, you may be askedto pay a fee for tissue typing costs (probably $50 or less).you can also register ON-LINE; log on to www.marrow.org, and you canhave a kit sent to you for $52. This payment is tax-deductible.

- What specimen is taken for you to be registered into the NationalMarrow Donor Program (NMDP)?
All that is needed is a cotton swab of your cheek cells.- Can i see if i am a match for Joe, but NOT be enrolled in theNational Marrow Donor Program? Yes, you can. This can be done through PRIVATE testing at anindependent laboratory which can determine your HLA results for the 6markers they look at when they determine whether or not you match. The cost for this process is $140 plus $15 shipping. They will mail you a kit, and then send you your results in about ONE MONTH. You can also select the expedited process, which will cost $375, but the results are returned in one week. Once you receive the results, you then need to give these results to Joe's doctor to see whether or not you match.
If you change your mind and want to be enrolled in the national program, you can do so by giving the results to the Central Blood Bank. The specific private testing lab that is recommended by the Centra lBlood Bank is the Tepnel Laboratory. All the info you need can befound on:www.bonemarrowtest.com

- If i am chosen, how will the stem cells be collected?
There are 2 ways:"Peripheral Blood Stem Cell donation takes place at an apheresiscenter. To increase the number of blood-forming cells in thebloodstream, donors receive daily injections of a drug called filgrastim for five days before the collection. The donor's blood isthen removed through a sterile needle in one arm, passed through amachine that separates out the cells used in transplantation, and theremaining blood is returned through the other arm.

Bone marrow harvesting is an outpatient surgical procedure performed in a hospital. While the donor receives anesthesia, doctors use special, hollow needles to withdraw liquid marrow from the donor's pelvic bones.Many donors receive a transfusion of their own previously donated blood. A donor's marrow is completely replaced within four to six weeks. "The patient's doctor will recommend one or the other to you, but it isyou who will ultimately decide which way to give them stem cells.

- Will we be having a NMDP registration drive at Pittsburgh Chinese Church?

i spoke with several potential sponsoring groups, but as of yet, i haven't been able to successfully coordinate a drive due to certainlogistics. i am still waiting to hear back from one and will let you now if things change. in the meantime, due to the length of time ittakes to get registered, i strongly encourage you to go on your own andget it done. Thanks again for your interest. i will keep you updated, and if youwould like to go with someone to the Central Blood Bank, let me know,and we can go as a small group. if this is the first e-mail you've received from me, let me know if you would also like to be added to the prayer e-mail list to receive updates on how Joe is doing. if you have any other specific questions, don't hesitate to contact me.

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." -- Matthew 7:7-8"

1 comment:

LisaBe said...

thanks so much for starting this. i love having a way to keep up with you that is easy for you to update for everyone at once. i hope to read good news here soon.
i'm going to look into a marrow registry drive next time at work.
smoochies,
lisabee