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Old Thu Dec 10, 2020, 11:27 AM
GoodDay5150 GoodDay5150 is offline
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9 Years Post Transplant!

This month marks my 9th year after a successful BMT for PNH. I have had a few issues every now and then, but nothing serious. For many years leading up to my diagnosis, I had debilitating fatigue and would regularly fall asleep during the day. (In addition to many of the other symptoms of PNH.) Some PNH experts I have met following my transplant disagreed w/ my PNH specialist regarding my course of treatment, but so far so good. I am not complaining! In respect to my anon donor, I have communicated w/ him but he has never replied to my emails.


Everyone, stay safe and Covid 19 free.


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 Fri Dec 11, 2020, 01:01 AM
Neil Cuadra Neil Cuadra is offline
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Mario,

Nine years is definitely an achievement worth recognizing, and celebrating!

Treating PNH is both art and science, so it's not always clear, even to the experts, when it's time for a transplant. We know after the fact if it was a good decision. In your case, it certainly was. There's no arguing with the success you've had!

I hope others are inspired by your journey, and that your remaining medical issues stay minor or fade away.
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Old Fri Dec 11, 2020, 12:27 PM
DanL DanL is offline
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Mario, here's a great big congratulations! 9 years is amazing and should be celebrated. If I recall correctly, at 10 years post transplant, life expectancy approaches normalizing, and relapse risk drops to a very very small number. I am very excited for you. Wishing you great continued health now and forever.

Dan
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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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Old Mon Dec 14, 2020, 12:10 PM
GoodDay5150 GoodDay5150 is offline
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Thanks for the encouragement Neil and Dan. I do not recall ever reading any studies in respect to PNH recurring after a successful transplant, but I do know of instances when the initial transplanted cell do not engraft and a 2nd infusion is done. I do know that I am at higher risk of MDS, (and other health issues) but I try not to obsess about what could happen, if that makes sense.


Happy Holidays to everyone!


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 Mon Dec 14, 2020, 06:02 PM
shadowii shadowii is offline
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Hey GoodDay5150

Quick question did you have any months around two years after transplant when your counts dropped for a bit. Because my fathers just did (he will be two years post transplant in march) and while he had had a cold and that could be why my mind immediately starts getting worried about reoccurrence.
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Old Tue Dec 15, 2020, 03:48 PM
GoodDay5150 GoodDay5150 is offline
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Yes sir. I do not remember any of my counts dropping post-transplant. There may have been a few times when they may have dropped a bit after photopheresis treatments, but nothing significant that I remember. For those unfamiliar, those treatments remove your blood to isolate and treat your white blood cells for GVHD. I have had a few bad colds/ bouts of the flu after my transplant, but I don't remember having any blood tests right around those instances. I was fortunate that my new cells engrafted quickly and I never required any transfusions post transplant, only some red cells a few times right after my transplant. My hematocrit levels have also been good as well. A great improvement from my blood test results before my transplant.


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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