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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Fri Jan 13, 2012, 03:24 PM
mausmish mausmish is offline
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From a marrow donor's perspective...

I recently learned the identity of my bone marrow donor, what a wonderful experience! She kindly gave me permission to post her words about her experience as an incentive for others to donate. I posted this in my transplant thread and my personal blog but thought it was important enough to repeat here:

“My [bone marrow] donation experience was wonderful – I received so much support from every person that I encountered throughout the process. I live in SW Washington – our home is actually on the Columbia River which borders Washington and Oregon so I’m about as far south in the state as you can go! I had to go to Seattle, which is about 3 hours away, on 3 separate occasions for screening, pre-op and the procedure. The procedure itself was uneventful. Post-op, I recovered very nicely. I anticipated that it would be extremely painful and was pleasantly surprised that it was not as bad as I feared. It took about a month or so for me to return to my normal energy level. I would do it again in a heartbeat, and have encouraged everyone I know to sign up for the donor registry. My husband and I had signed up about 5 years before I was called as a potential donor. I couldn’t believe how easy it was to get on the registry – just provide a cheek swab and you are good to go! I honestly don’t understand why anyone who is able, would not sign up to be on this registry. The discomfort/inconvenience a donor goes through is nothing compared to the gift that they can give. Many people I knew were skeptical about me doing this and would say, ‘I could never do something like that,’ and that is just so hard for me to understand.”

To donate, visit the Be the Match at http://marrow.org/.
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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 Sat Jan 14, 2012, 08:46 AM
squirrellypoo squirrellypoo is offline
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I'm so jealous!! I wrote a letter to my donor at the one year mark (the first I was allowed) but never had any reply. I was really hoping to be able to thank him in person some day.

Karen, you had marrow, not stem cells, right?
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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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  #3  
Old Sat Jan 14, 2012, 09:52 AM
mausmish mausmish is offline
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Yes, marrow. I had told myself I wouldn't be disappointed if my donor wanted to remain anonymous but judging how excited I feel now that I know, I was probably just fooling myself. I was so nervous after I emailed her and didn't hear anything right away. And it only took her a little over a day to reply, lol.
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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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Old Thu Sep 13, 2012, 01:03 AM
Sandi M Sandi M is offline
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Things In Common

My husband, age 64, has recently been diagnosed with MDS RAEB-1 & I am anxious to have the opportunity to speak with you by phone or perhaps meet you sometime as you live close to my son & daughter. Would this be possible? I am looking for guidance & my husband is also being monitored at Hopkins. He is healthy enough that he is not recieving treatments but if his condition worsens, he will be put on Vidaza & then possibly be a candidate for a BMT. We are awaiting the results of the testing on our children & my husband's siblings for that match. I so need to know we are going down the right path & need to know what to expect. It is quite a learning experience.
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Old Thu Sep 13, 2012, 10:40 AM
mausmish mausmish is offline
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Sandi, I sent an email last night to the address you provided on my blog. Did you receive it? Karen

P.S. I just resent the email via the form here.
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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

Last edited by mausmish : Thu Sep 13, 2012 at 10:55 AM.
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  #6  
Old Thu Sep 13, 2012, 11:39 PM
donna j. donna j. is offline
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I was allowed to send a non specific note to my donor after 4 months 6/12). It was to be reviewed by my donor team, the donor' own team and ultimately given to her if there was no specific information reavealing who or where I was.
10 days ago I was handed a card from my donor dated in June.
My main interest was to thank her, and let her know I cared if she was ok or not. (she donated bone marrow, not stem cells). I told her I was recovering, doing wel, even though the process was slower than I hoped.
She said she was fine afterwards,sore. her mother and financee did not want to go forward, (I guess that was why there were 4 dates, which "she was not available", only to finally agree on the fifth suggested date to proceed).
She said she missed a week of school and work, but felt great now.
She had been told she could also contact me via the same channels however, she would be notified the facts no matter, including if the outcome had been poor, and she didn't want to know that. She decided to wait.
It was so great to make some contact, I'm still blown away and still wonder why this 22yr old girl would choose a bone marrow donation over a stem cell donation. I'm still perplexed of my donor nurse was looking for that and why?
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  #7  
Old Fri Sep 14, 2012, 11:10 AM
mausmish mausmish is offline
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Hi Donna,

I'm so happy you heard from your donor. What a courageous and generous young woman!

The decision whether to use bone marrow or stem cells is up to the patient's transplant center. In my case, Johns Hopkins uses bone marrow because they believe it reduces the incidence of graft vs. host disease.

My donor said she attended a donor conference and after hearing the experiences of those who donated stem cells instead, she was actually grateful that she'd done marrow. Some of the stem cell donors had flu like side effects from the drug administered to release more stem cells into the blood. The thing that all the donors had in common was that they were glad they did it and they'd do it again in a heartbeat.

We owe our lives to the amazing folks. I am truly grateful.

Karen
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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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