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Spouses and Caregivers The people who take care of the patient

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  #1  
Old Mon Nov 10, 2014, 08:51 PM
lorumipsum lorumipsum is offline
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Something to help?

Obligatory "I'm not sure if I'm in the right place" comment.

I recently underwent a bone marrow harvest and I was informed I could have contact (letters, small gifts) with my recipient through an NMDP coordinator. I want to send something that they might be able to use,or something that might make things easier during the time ahead. (A snuggie?) Is there anything that fits the bill?
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  #2  
Old Mon Nov 10, 2014, 09:09 PM
Neil Cuadra Neil Cuadra is offline
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I know from experience that nothing is more welcome than a heartfelt letter between a donor and a recipient, so that's much more important than a gift. You can't provide personal information about yourself in your note (an NMDP rule), but you can certainly write about how you feel about donating and your hopes for your recipient.

If you also feel the need to send a gift, a warm non-scratchy blanket of any size, for example a lap blanket, would be both thoughtful and likely very practical. A regular blanket works for everyone, while a Snuggie-type garment with sleeves might not fit. Your recipient might be a child!

Another choice would be something personal, like a home-made good-luck charm or a book or poem that inspires you.

Avoid food and plants for medical reasons.
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  #3  
Old Tue Nov 11, 2014, 02:25 PM
KMac KMac is offline
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I am touched that after giving a stranger a new lease on life with your selfless gift of a marrow donation, your next thought is to reach out to them and let them know you are thinking about them in the challenging days ahead.

I'm an SAA survivor who was fortunate enough to respond well to immunosuppressive treatment. Of course I hope I'm never in need of transplant. But since my siblings are not a match, if it ever comes to that, my life too will depend on the selfless love of a stranger like you.

Thank you for your generosity, and for being a hero to someone in utmost need.
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #4  
Old Wed Nov 12, 2014, 09:24 PM
lorumipsum lorumipsum is offline
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Thanks for the replies guys.

Neil,

I think I'm going for something warm. Maybe a beanie, or a nice cap for winter. Unless I'm mistaken the process usually ends up with some hair loss. On a side note, I have a very strong suspicion that my recipient, or rather someone posting on his his behalf, recently posted here. I found your forum with some good old fashioned google-fu.

KMac,

Thanks for the kind words. This was a life changing experience for me. On paper things should be fine, but I'm not very happy with the status quo before the donation. I feel like I need to continue to make a difference and right now, this is the best way to keep the ball rolling.
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  #5  
Old Wed Nov 12, 2014, 09:41 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by lorumipsum View Post
I think I'm going for something warm. Maybe a beanie, or a nice cap for winter. Unless I'm mistaken the process usually ends up with some hair loss.
Yup, hair often (usually?) falls out or becomes very thin when a patient gets chemotherapy or full-body radiation. And they get cold. Caps and scarves are very common at transplant hospitals.

Quote:
On a side note, I have a very strong suspicion that my recipient, or rather someone posting on his his behalf, recently posted here. I found your forum with some good old fashioned google-fu.
I'm surprised more donors and recipients don't find each other on their own, given how much informaiton people tend to put on the Internet. I hope the NMDP won't think we're encouraging it, since their reasons for donor-recipient anonymity (at least at first) make sense. But curiosity is awfully strong!

My wife was convinced that her donor was on the east coast of the U.S. because of the time of day when her marrow arrived by courier on the west coast. We didn't know for a year, but she turned out to be correct.
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  #6  
Old Wed Nov 12, 2014, 09:55 PM
lorumipsum lorumipsum is offline
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Quote:
Originally Posted by Neil Cuadra View Post
I'm surprised more donors and recipients don't find each other on their own, given how much informaiton people tend to put on the Internet. I hope the NMDP won't think we're encouraging it, since their reasons for donor-recipient anonymity (at least at first) make sense. But curiosity is awfully strong!
You're telling me! I got a few details regarding my recipient. Age, condition, gender, plus I'm an unrelated donor. Took a few days, but nothing hides from Google! I'm not going to jeopardize my anonymity or to make the NMDP mad (if they were to find out), but I have been tempted to start some kind of dialog to see how they are. I actually got to read a few updates here. I have not heard anything from my NMDP coordinator but to be fair, I'm not sure when or how frequent they provide them.

You're running a great place here. It's an amazing community that helps each other.
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  #7  
Old Fri Nov 14, 2014, 05:49 PM
GoodDay5150 GoodDay5150 is offline
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I had a STC trans 3 yrs ago, and I have never had any contact w/ my donor. I've heard diff things abt privacy laws etc. It is indeed a great and generous act to donate marrow/ stem cells. Last yr around X-mas time I just hppnd upon a donor going through the harvesting process at the hospital where I was treated. I told them the same thing. Your generosity will not go unrecognized here!
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