9 Years Post Transplant!

[GoodDay5150]

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

[Neil Cuadra]

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.

[DanL]

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

[GoodDay5150]

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

[shadowii]

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.

[GoodDay5150]

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