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Transplants Bone marrow and stem cell transplantation

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Old Wed May 25, 2016, 02:58 PM
jordan'smom jordan'smom is offline
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My daughter will be a donor

Hi Everyone,

I'm not sure if this is the correct place to post this; however, My daughter is going to be a bone marrow donor in July for a person that has SAA. She has been found to be a 10/10 MUD. I am trying to learn everything that I can about the transplant process so I will know better what to expect in the future for her and her recipient. She will be donating bone marrow and not stem cell. I would love to find out any information that you all may know about the process or experiences you may have had. I think that I have read that BMT is preferable to stem cell donation with AA. Is that correct? Also- have any of you met your donor? I would love to hear from recipients their thoughts and feelings regarding this. She and I have already become very emotionally invested in the hopes her marrow will take in her recipient. We are maintaining the confidentiality as requested by the registry. I will say they are both young and within 5 years of each other's age. Any information regarding transplants would be so appreciated! I know this forum is typically for people with blood illnesses and not donors but my daughter and I want to learn all we can about this entire process from both perspectives. She is so honored to be able to do this for someone.
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Old Wed May 25, 2016, 06:25 PM
PaulS PaulS is offline
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Hi Jordan's Mom -

Your daughter is doing an amazing and wonderful thing - I received a transplant in September - from a 24 year old woman - also marrow. That's all I know about her at least for now - I was allowed to send an anonymous email at 6 months but haven't heard anything back yet. I often wonder what kind of person goes through a painful procedure to save a complete stranger's life -- its really awesome.

I pray for my donor almost daily and am grateful beyond words for her gift - she gave me back my life. I approach life now with renewed energy, humility and an enormous sense of gratitude - and reinforced feeling of obligation to live with meaning and purpose - I really want to make her proud.

Donating marrow is, I imagine, fairly unpleasant - but hopefully she'll recover without too much trouble.

I have a transplant friend who has become very close with his donor - they get together often and he (the recipient) has become a bit of a father figure to his donor and his family - its very nice. Of course not everyone makes contact.

I suspect you raised your daughter well - and should be quite proud of her.

Best wishes to you both,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Thu May 26, 2016, 12:00 AM
Ruth Cuadra Ruth Cuadra is offline
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Hi, Jordan's Mom.

I want to echo Paul's sentiment that your daughter is doing an amazing, life-affirming, and absolutely wonderful thing. I received a bone marrow transplant from a perfectly matched, unrelated donor (MUD) in October 1998. I'm currently 17.5 years post-transplant and in perfect health aside from those things that come our way in middle age--but those would have come anyway. In the years since my transplant I've seen my sons graduate from high school and college and go on to establish themselves in solid careers. I've celebrated 35 years with my devoted husband, Neil. And all because of the generous, selfless act of my donor. Not a day goes by that I don't think about her.

I met my donor, courtesy of Be The Match (formerly the National Marrow Donor Program), in 2000. You can read about my experience in my Personal Profile. She spent the night in the hospital when she donated marrow and described the discomfort afterwards as similar to having fallen on her backside while ice skating, but she was able to resume her normal life immediately.

I am always compelled to hug any donor I meet, so please give your daughter a virtual hug from me on behalf of all transplant recipients. Feel free to post more questions here. I'm happy to help in any way I can.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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Old Thu May 26, 2016, 12:32 PM
GoodDay5150 GoodDay5150 is offline
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Hi Jordan's Mom. As someone who received stem cells from an anon. donor for PNH, myself and others are truly grateful for people like your daughter. I spoke to someone who was donating for a stranger at the same hospital where I was treated, and I told the donor and his mother the same thing. I have submitted a letter to my anonymous donor, but I have never gotten a reply. I only know that they are male w/ a diff blood type than mine, and from the U.S. A nurse from my clinic who helped coordinate everything told me that my donor was such a good match that it would have been nearly impossible to find an equivalent donor. I would very much like to meet my donor and thank them in person, but I'm assuming that they will choose to remain anon. It's an odd feeling knowing that someone whom you have never met is a part of you.

Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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