Brad- it’s tough to say because everyone experience is different. I dealt with severe GVHD in the first 60 and had a very rough go. And then the emotional/mental part isn’t easy. How did it feel? To give my experience - very tiring. Not a lot of strength or stamina. There were days when I didn’t want to take a shower or do just the basic walking 100 yards but most days I forced myself to do it. My wife met me where I was which I’m sure took restraint sometimes because she is a nurse. As a transplant patient - you want to get back to normal but you also don’t have as much ability to access the “want.” They say that fatigue makes cowards of us all & I think it’s because when you are so fatigued it Zappa your desire. Does it help to ask home you can best support your wife? And then just do that? You may have more “want” and desire than her right now and to you might be careful to make sure that doesn’t overwhelm her. Baby step are ok.

Hi Brad, I was thinking about you and your wife today, wondering how things were going. Day 45 is not unreasonable for her to still be feeling exhausted and unmotivated. There are patients who have a very difficult time regaining their full stamina and energy years later. As Ted has said, everyone’s experience is different. Our bodies recover on their own schedule. It can’t be rushed. It is discouraging sometimes because we get impatient to get back to normal! But if our body is craving rest and sleep, then that’s what it needs.

I know you’re familiar with her blood counts. Until her hemoglobin starts getting to a more normal number, 12.0 on the low end, she will have some very sluggish days. That will take quite a while to recover. She’ll do well even around 6 to 8 but will tire easily. I was fortunate in that I recovered fairly quickly and was walking 1 to 1.5 miles daily by day 50. (Looked back in my diary today) However there were days even after that where I just could not get out of bed and would roll my eyes at my sweet husband encouraging me to, ‘let’s take a little stroll to get the blood moving.’ I would remind him that my doctor and NPs tell me to Listen to my body; I am it’s telling me it just wants to lie here for now. ;-). Some days my skin would itch, or my feet would be hot. Just weird little things that would come and go. So there are always ups and downs that first 100 or so days. Things really turned around positively by day 60.

“Feeling like crap”... Those are familiar words uttered by me and several friends I met along the way who all had transplants around the same time. It’s not something we could really define either. Mostly it was the low energy, lethargy, doing anything was a challenge to get motivated. Similar to getting over the flu. Difficult to define but you get through one day at a time.

Ted mentioned days not even wanting to take a shower. I was the same way. It was a challenge, by the time I got the dry shield placed over my Hickman port, I was exhausted. Could barely wash my hair AND take a shower. Eating wasn’t normal because food tasted like nothing. That was still in part from my initial 3 months of chemo with the AML prior to the transplant. Nausea crept into the picture as I tried to wean off the zofran. Around day 45 we had switched from IV antifungal to oral meds. That threw off my tacrolimus level in my blood to a higher level, making me feel really lousy, weak, shaky. But that was rectified quickly and I was back to feeling “meh” instead of “blahhhh”. It’s all relative! LOL.
Your wife will just have to ride this out one day at a time. Maybe she can challenge herself to one little thing per day. but there’s no point in pushing as it may physically not be possible yet. Just let her set her own pace, stay supportive as I know you are.

I hesitate to write this in an open forum as I don’t want to discourage any potential transplant patients who might be reading this. Honestly, this period passes and life really does return to normal and we survive, thrive and have an amazing second chance at life! ☺️ I think there’s an exuberance in knowing we pushed through and survived! It’s a feeling like no other!! Stay strong, stay positive!