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PNH Paroxysmal nocturnal hemoglobinuria

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Old Wed Sep 6, 2017, 06:09 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
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Nearly 6 Yrs Post Transplant

Just a quick update to any other PNH patients who have been transplanted or may be planning for one in the future. I am mostly doing well and I no longer take oral anti-rejection meds. I do have some skin, muscle, and joint related GVHD which has been improved w/ iv infusions of Rituxan. There is a noticeable improvement and hopefully my GVHD will continue to slowly improve as it has up to this point. I'm finally getting used to not yawning and falling asleep during the day as I did for many years before I was transplanted! My transplant doctor(s), (as well as myself) are pleased w/ my progress so far. I wish everyone impacted by this disease success in your treatment and to try and stay positive!

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Wed Sep 6, 2017, 07:55 PM
Callie Callie is offline
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Join Date: Jan 2014
Location: Fayetteville, NC
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Love to celebrate the anniversaries with everyone on here!! Congratulations!!! Wishing you many more years!!!
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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Old Thu Sep 7, 2017, 02:03 PM
GoodDay5150 GoodDay5150 is offline
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Hi Callie. Thanks for the congrats! We were all sorry to hear of your loss. Bone marrow failure diseases and cancers of the blood are hard on everyone involved, as you well know. I have been pretty lucky/ fortunate that my post-transplant experience has gone so well.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Thu Sep 7, 2017, 09:29 PM
Callie Callie is offline
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Join Date: Jan 2014
Location: Fayetteville, NC
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Thank you, Mario. It's been almost 2 months now, and it still can't be real......We knew the statistics (research had become our lives), and knew that Dad had overcome so many odds. He just kept saying (for the last 2 years), "I'm at the end of the algorithm. They don't know what to do with me." But with all that, we all still really thought he'd live forever (relatively speaking, he did extremely well the entire time!)...Everyday there's a new reason to miss him! I really appreciate people here remembering Dad. That is a huge tribute to him and means a lot!!

I truly wish everyone here continued success - may everyone overcome the odds!!!!
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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