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  #1  
Old Tue May 22, 2012, 10:48 PM
mausmish mausmish is offline
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I met my donor!

I just returned from my first post transplant vacation, a trip to southern Washington and Oregon to meet my donor with a stop on the way home in the Colorado Rockies. We had a wonderful week. While I was visiting with my donor, we were interviewed by features editor for The Daily News of Longview, Washington. She wrote a very nice article about my donor and me, published today. Some of the finer technical details are not correct but it is a beautifully written story about me meeting my donor plus a plea for others to join the National Marrow Donor registry. See the story here. There are also a few more photos on my blog, linked below. It was a fantastic experience finally meeting my donor and being able to thank her face to face for saving my life.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #2  
Old Tue May 22, 2012, 11:27 PM
Debbie W Debbie W is offline
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Karen

Just reading the updates it sounds like you had a great trip and that your donor was just as thrilled to finally meet you. What a wonderful gift to give a stranger and also you traveling across country to meet her and her family.

Be well !!!
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #3  
Old Wed May 23, 2012, 12:03 AM
cathybee1 cathybee1 is offline
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What a pleasure to read this, Karen.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #4  
Old Wed May 23, 2012, 02:37 AM
Ruth Cuadra Ruth Cuadra is offline
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Dear Karen,

What a fabulous experience! So much of what was conveyed in the article reflects my own experience when I met my donor. She never considered backing out. She said, "It was the right thing to do. If people like me don't help people like Ruth, who's going to do it?" We had an instant bond.

I wish you continued success with your recovery and many good times with Michael--and Mary!

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98

Last edited by Ruth Cuadra : Wed May 23, 2012 at 02:51 AM.
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  #5  
Old Wed May 23, 2012, 02:11 PM
Laura Laura is offline
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What a great article!! It sounds like a wonderful trip. I am so happy you were about to meet her! laura
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  #6  
Old Wed May 23, 2012, 10:43 PM
milliken2 milliken2 is offline
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I can't even begin to imagine the feelings you both went through - and I a so happy for you, and your successful trip. Take Care.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #7  
Old Thu May 24, 2012, 02:44 PM
mausmish mausmish is offline
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Thank you all! We really did have a wonderful time.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #8  
Old Mon May 28, 2012, 09:52 AM
squirrellypoo squirrellypoo is offline
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That's so cool! I'm really very jealous! I wrote a thank you card to my donor at one year, but never had any reply from him.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #9  
Old Tue May 29, 2012, 12:56 PM
Laura Laura is offline
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Quote:
Originally Posted by squirrellypoo View Post
That's so cool! I'm really very jealous! I wrote a thank you card to my donor at one year, but never had any reply from him.


same here.....have written....no replies....her country makes us wait five years before we can ask to know who each is...
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  #10  
Old Tue May 29, 2012, 02:08 PM
mausmish mausmish is offline
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Wow, I now feel especially fortunate to have made contact so easily and with such a positive outcome.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #11  
Old Wed May 30, 2012, 10:32 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by squirrellypoo View Post
That's so cool! I'm really very jealous! I wrote a thank you card to my donor at one year, but never had any reply from him.
That's too bad. Maybe it's worth trying again. Perhaps he'll reply to a second letter. Maybe he's so selfless that he wants no credit, but you'll always be curious.

Meeting my wife's donor was an amazing experience and I sure hope you get the opportunity.
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  #12  
Old Wed May 30, 2012, 07:35 PM
Lori Patrick Lori Patrick is offline
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Wink

How neat Karen! I'm sure you made her day - year! Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #13  
Old Wed May 30, 2012, 07:58 PM
donna j. donna j. is offline
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I was allowed to send a note to my donor with no identifying information and my transplant center sent it to the center where the donor was located to be forwarded to her. I wanted to thank her and hoped she was feeling well and recovered from the donation. I haven't heard back either. I wonder if perhaps the donors don't always receive our cards and notes.
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #14  
Old Thu May 31, 2012, 04:32 PM
mausmish mausmish is offline
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I had to wait an entire year to be able to do anything and then had to complete a written request via my transplant center that had to be approved by the donor. After that, however, I was provided with full contact information - name, physical address, phone, and email. The release forms for both of us included spaces for desired methods of contact. My donor asked about me throughout the year but was told only that I'd successfully engrafted her marrow.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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