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Update on Scott

limeylass

New member
After a few really rough weeks in and out of hospital with mucositis, Scott has been home for 4 weeks now. We are 7 weeks out on Friday from the transplant. He had 100% chimerism at 30 days which we were very happy and frankly, surprised to see. He is eating well although his taste buds are still not right. But at least everything doesn't taste sour anymore. He is so tired - its driving him crazy. He is back to his push ups, and pull ups. But sleeps about 18 out of 24 hrs! Tte worst is over. It was hell but my zombie is coming back to the world of living - able to watch TV and read. Woop woop!
 

po18guy

Active member
Good. Very good. Excellent even. But tell him to take it easy - he has a very immature immune system during a very dire world situation. I don't even need to say more about that. Do not want to sound negative, but men are men. Hard of head and sometimes hard of thinking. Certainly hard of listening. Who will he listen to?

Second: He is no longer Scott. Not entirely; not 100% and never will be. He is himself plus his donor now. Not the same and the new normal is not the old. He has the rest of his life to acclimate to what lies ahead.

This is a time for his body to control him and not for him to control his body. Sounds like his sleep level is making that impression on him. Convincing him to ease back into life is probably a huge challenge for you, but he really needs to allow himself time - as long as it takes - to allow his body to make the unprecedented adjustment to being a chimera.

And let us not forget that dealing with GvHD ranges from easy to well, you know. I am older and more decrepit but it took me three years and every treatment they had to finally get some semblance of control of the GvHD. Lungs are a big one and this is no time for that!

Sorry if I sound excessively cautionary, but this is age and some very hard learned lessons speaking.

Again, great news!
 

andym

Super Moderator
100% chimerism is awesome. 4 weeks at home is too. And being that tired is very normal.

I’ve been thinking of you both and hoping for this sort of good news.

Hooray!!
 

Voyager

Member
Please let Scott know he’s right on track with what I went through. The fatigue is overwhelming, and for me, took over a year to dissipate, but eventually it did. I actually didn’t try to fight it. We even joked about whether I slept 18 or 19 hours on any given day. I would suggest, if safe and possible, to get out and go for a walk and some fresh air on a regular basis.

I’m glad to hear he seems to be doing better. That mucositis was also awful for me, but not to the point of hospitalization. If he’s on long-term Prednisone, you may want to inquire on putting him on a statin as a prophylactic against avascular necrosis (AVN) and osteoporosis.
 

MikesSis

Member
So wonderful to hear this news - I've been thinking of you both, and hoping for the best. Others here will have much better advice, but I wanted to add my cheers to the thread.
 

limeylass

New member
Thanks everyone for all of your kind words. You all keep me going - this forum has been my biggest source of information & hope. Particularly to the guys that have been down a similar road to Scott - thanks for your insights, advice & humor.
Love Annette
 

Step2

New member
Glad to hear that he's back home and recovering. Sleep is so reparative. The best to both of you!
 
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andym

Super Moderator
Here's two stories about how tired I was. During the early days I was on a phone call with a few colleagues and one of them said how energetic I sounded. I told them that was good but I had done another phone call earlier in the day and then took a two hour nap. And I was going to need another nap after this call.

And at the 100 day mark, I saw my transplant doctor and she asked what surprised me most about the process. I said it was how tired I was and she replied that she had told me I would be tired. I replied that I just hadn't been able to imagine being that tired.

On the good side, Stephanie once told me that on our early walks it was hard for her to go so slowly and I remember having to lean on her for the last parts of those very short walks. But we also remember our walks getting longer, started including hills, and when I started being faster up those hills. Recovery happens.
 

zac495

Moderator
Oh my gosh that's SO FANTASTIC!!!!!!!! SO tired - I remember. It's tough, but he'll start feeling better and better.
All my love to you both
Ellen
 

cocamoxb

Member
It's good to see Scott is on the mend. I remember sleeping ~18hrs when I'd get home from my EPOCH-R treatments. My gosh, I slept so hard. Frequently woke up drooling on my pillow.....

I need to take his lead and exercise more. The 40lbs I lost on my chemo weight-loss program have made quite the comeback! :/

All the best to you both, be strong!
 
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