5 Yrs Post Transplant

[GoodDay5150]

This week marks the 5th anniversary of my stem cell transplant for PNH. The great staff where I go; (PSL in Denver) are the best, so that helps as well. I have a few lingering issues, but my transplant doctor said she would do it all over again and so would I.


Mario

[Neil Cuadra]

Mario,

This is a great milestone to celebrate! Let's not forget to give a cheer for your donor too!

I know it wasn't always smooth sailing for you -- you've mentioned dry eyes, rashes, and shingles, for example, plus the stem cell translate itself -- but it must feel great to be 5 years out.

I hope it's feeling like a part of your life from the past, and not something you still think about that often. How often do you have checkups now?

[GoodDay5150]

Hi Neil. Yes, you are correct in my great appreciation of my still anon donor. I'm really curious about what they; (he), is like. If that makes sense! I don't think about the ordeal as much as I used to, but it's something that will always be with me. As far as the frequency of check-ups are concerned, I have been going every few months or so bcse of my GVHD, but they're sort of a routine at this point. And of course, not being tired all the time is still becoming a routine because I guess that I got used to being tired all the time when I had PNH!

Mario

[bailie]

Mario, your success is very encouraging. Have you (or anyone) ever had it explained to you why almost everyone "gets tired easily" after transplant? I have never heard the medical reason. It seems like after the transplant event we shouldn't have that tired feeling for a long period.

[Neil Cuadra]

Originally Posted by bailie

Have you (or anyone) ever had it explained to you why almost everyone "gets tired easily" after transplant? I have never heard the medical reason.

Without medical training, I don't know any authoritative answer, but it seems to me that your red blood cells are working hard at what they always do -- powering your cells, body, and brain -- but they are also hard at work on your overall recovery. If you think of what you went through during a transplant then it's not surprising to me that much hemoglobin-powered energy would be going into rebuilding your health, stamina, and strength, leaving less energy than a normal person for general activities.

[GoodDay5150]

Hi Bailie. The answer that Neil gave sounds like something that I read a while back. With that, many of the associated pre and post transplant meds are very hard on your body. And some people are able to tolerate meds and treatments better than others. I came across this article recently.

May we all continue to live as well as possible!

Mario

http://www.nature.com/bmt/journal/v3.../1705624a.html

[Neil Cuadra]

Originally Posted by GoodDay5150

I came across this article recently.

http://www.nature.com/bmt/journal/v3.../1705624a.html

What an interesting report. The study concludes that the ongoing fatigue of many post-transplant patients correlates with (and is presumably the result of) coping difficulties, fear of relapse, mis-attributing fatigue to their past disease, sleep difficulties, and a lack of social support.

I suppose that's good news, because if these are contributing factors, rather than the direct effects of transplants, then there are ways to deal with the problems that may help.

[bailie]

Thank you Mario, great information. Then there is the aging factor since we are all getting a little older while experiencing the effects. Another variable is the different medications which seem to be different for most of us.