Matchmaker, Matchmaker Make Me a Match

3 Mar

“You’re not as unique as we thought you were!” exclaimed my mom when I told her the news.

Pediatric BMT Nurse Julie called late yesterday saying they had already run the Be The Match Registry data search and found “a good number” of potential donors. “I know the news about Jack was hard yesterday, but this is really good news.”

“Is this out of the ordinary?” I asked, wondering if the quick matches would lead to the bigger prize – an earlier bone marrow transplant.  Dr. Arndt said it usually takes three months once the Registry search begins until you actually get the good stuff.

The fastest Julie has seen things move is two months. But I’m definitely on the fast track. It’s a process:

  1. My insurance company needs to approve the plan to re-test all my potential matches.
  2. The Registry team tracks down each potential donor (some may have moved, decided they no longer want to give, etc.).
  3. Each potential donor needs to go in for additional blood work. Most originally submitted cheek swabs, so they need to get more information – we’re talking molecular HLA level – as well as make sure they haven’t contracted diseases like HIV or hepatitis. No one wants that.
  4. My doctors act as my own little cupid and compare my potential matches, searching not only for the best marrow match, but if we have the luxury, the healthiest.
  5. The marrow donor finds a time convenient for him to have the short (and remember, pretty painless) procedure.

That hopefully puts us in early May. In true Langer women fashion, my mom wants to beat the two-month record. If it were up to her, she would be making the calls and driving people to their appointments. Apparently that’s not in sync with HIPAA.

So what do we do in the meantime? Well, for starters, I’m getting a bunch of teeth taken out on Monday. One tooth (in the back, people) is dying from the radiation I received and is a probable source of later infection. Since he’s in there, my DDS, MD wants to remove my wisdom teeth, another source of potential infection. The challenge is that because I had radiation in the area, my blood vessels have shrunk, making healing more difficult.  Plus, my platelets are über low, so I’ll get a platelet transfusion before surgery.

Dr. Arndt is diligently collecting input from a host of experts on what treatment, if any, I should receive while I wait for my BMT. We’ll have that conversation next week. As I said in an earlier post, the trick is to keep a cap on the MDS so it doesn’t turn into AML, but also to keep me as healthy as possible to make sure this BMT thing works.

Until then, I can’t get this song out of my head. It may as well be in yours too.

 

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19 Responses to “Matchmaker, Matchmaker Make Me a Match”

  1. Ann V. March 3, 2011 at 11:22 am #

    Jenna,
    That’s great news! I had no idea that you had returned home until Cindy sent me a link to your blog. Please know that those of us in VA are thinking about you! Love the blog by the way. 🙂

    • Jenna Langer March 10, 2011 at 5:51 pm #

      Ann – thanks so much for your note. Things all happened really quickly. I love the love from Virginia 🙂

  2. Carly March 3, 2011 at 11:35 am #

    Screw HIPPA, I’ll go hunt down these people with your mom! (I didn’t say that…since I’m supposed to really love HIPPA). Hope you beat the 2 month mark and I’m still hoping to give you my marrow 🙂

  3. Lisa Helling March 3, 2011 at 11:38 am #

    Thats great news Jenna! My mother has been keeping me up to date on your current situation via your mother. My mother and I both signed up to volunteer marrow. Good luck with everything.

  4. Grandpa Dick March 3, 2011 at 1:26 pm #

    This is wonderful news Jenna! God is on your side – and why wouldn’t be? You are special!
    Good luck with your extractions next week. Hopefully by the time that is done and healed, you will be ready to roll into the next phase of treatment.
    Go girl! Love you.
    Grandpa & Grandma

  5. Annette Rhein March 3, 2011 at 2:06 pm #

    We are praying for you Jenna, and hoping this search goes fast and you are better in no time.

  6. Ann Bergemann March 3, 2011 at 2:19 pm #

    Yippee Jenna! And that is a Wonderful Song to have in your head!
    I have to tell you. My daughter Emily is 12. She started confirmation classes this year and last night was one of her church nights. One the way home from church she was telling me about how the Youth Pastor “makes them be quite for like 15 minutes” while they group take communion and the group is silent with their thoughts and prayers. Following the (described to me as) ever so dreaded, time exhausting silence, individuals can have a “shout out to the Lord” to add in the prayer stated as a group. Well Emily, describing herself as bursting from the seams to have her chance to make her “shout out to the Lord”, she yells “Jenna, my mom’s daughter from work!!!!!” It was such a cute story, it made me smile and I hope it does you too!
    Anything, I can do, we can do, just ask!
    Love you! Keep up the posts, you are a fantastic writer!
    Ann

    • Jenna Langer March 10, 2011 at 5:54 pm #

      That’s so sweet – and I love the artwork she made me! We haven’t had drawings on our refrigerator in a while, but now is the time for some color!

  7. Clare March 3, 2011 at 3:24 pm #

    Glad they found someone so quickly! I will let you know if I get the call and your mom can come pick me up:) My bags are packed just in case. Being ordinary=a good thing! Hang in there!!

  8. Kirsten Lesak-Greenberg March 3, 2011 at 3:47 pm #

    SUCH good news!! Glad to hear that you found several matches. A big leap forward toward the transplant!

    This is also a good reminder to all those on the Be The Match Registry — if you move or your contact information changes, UPDATE your information with the NMDP at BeTheMatch.org or 1-800-MARROW-2. We need to be able to find you if you’re a match! (Ah, can you tell that I’m in PR? Just a tiny, but important plug.)

    -Kirsten

    • Julie (J Fart) March 3, 2011 at 8:36 pm #

      Yeah!! I’m so happy to hear this, Jenna! Someone’s out there just waiting to give you their matching shit!

    • Jenna Langer March 10, 2011 at 5:56 pm #

      I echo that plug! There would be nothing better than for these lovely potential donors to act quickly! I’ll plug it all you want

  9. Sue Dommeyer March 4, 2011 at 8:50 am #

    Whoohoo! The news has made my Friday. So glad to hear it!

  10. Ann Tucker March 4, 2011 at 11:49 am #

    Nice of your mom to find such interesting continuing ed opportunities for you. It would make for an eye-catching bullet point on your resume, yes?

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