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

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.

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

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

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.

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