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#1
Wed May 29, 2019, 07:56 PM
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1 year post transplant and 1 year old!
Wanted to post an update:
It's been almost 2 years since my husbands MDS diagnosis and 1 year post transplant and is 1 year old!  Grateful every day! So grateful for the donor for giving him a longer shot at life and letting us continue to share our lives together. Praying that this trend will continue for him.As those who have gone through transplant, you all know what the journey is all about even though everyone has different experiences. We are finally beginning to breathe easier although still cautious. I am so very proud of him and what he went through. His bravery and a real trooper. He did very well post transplant. No GVHD, no infection, just some minor issues that were rectified with changing med dosages. And his hair hasn't grown back. But he is ok with that! I said to him, it's trendy and I am used to it. People he hasn't seen in a while do not recognize him. A small price compared to the alternative. He is back to work, although it was tough in the beginning and now he said it's like he never left. He's gotten vaccinations and is now getting the boosters. I wish everyone going to transplant a successful one. Don't give up hope you can do it! Rarity 
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#3
Wed May 29, 2019, 08:43 PM
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Wow. that is an amazing and inspirational recovery. Best of health moving forward for your husband.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#4
Fri May 31, 2019, 07:45 AM
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Thank you Shadowii! Well wishes to you!
Dan - A big thank you to you for all your helpful answers when we started this journey. It is very much appreciated! Wish you well and hope you are getting through your recent bump. Rarity
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#5
Fri May 31, 2019, 06:32 PM
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Rarity,
Such wonderful news ! No GVHD and vaccinations already ! And back to work ! I am proud of him And proud of you too !!!Take care and God bless. Do remember to update us. Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in 2017.
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#7
Mon Jun 3, 2019, 10:52 PM
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Wonderful news, Rarity. Congratulations to you both!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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#8
Tue Nov 5, 2019, 10:43 PM
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Great news Rarity. Ed is almost 6 months out and struggling with unexpained thrombocytopenia but still thankful for each day! He is my hero!
Keep up the good fight! Kathleen
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Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day. October 2018 started Decitabine, "exceptional response", MUD HSCT May 7, 2019.
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#9
Fri Nov 8, 2019, 02:17 PM
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Hello Quantpsyc,
Yes, they are all hero's who have to endure this journey! Never give up hope! I hope your husband continues to move forward even through the bumps along the way. My husband continues to do quite well! He is 18 months post transplant. He truly is a fighter and I am so very proud of him for that! I sometimes almost feel guilty for his almost non eventful recovery that I don't post. I do check in to see how everyone is doing. Take care! Rarity
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