Hey Brad, I don’t mean to be so long winded but you’re asking for details so here goes. Honestly, your wife just needs time to recover. The old axiom of ‘it’s not a race, it’s a marathon’ is appropriate in this case. Consider if she had major heart surgery and the length of time her body would require to recover from that. No one would question her being tired or worried about malaise. A procedure like that is generally localized but still involves healing from trauma to the body. It can take 6 weeks minimum for a body to recover, and that’s not a complete return to ‘normal’.

She is only at day 45, not even halfway into that all critical first 100 days so you may be expecting too much too soon. It’s like an infant, they can be born on the same day but no two will develop at the same rate. This all takes time but the end results are the same. ☺️ As her care giver, you feel helpless. My husband felt the same way too. I finally told him to please stop hovering, that I was so grateful for his patience and understanding but I’ll ask when I need help. It helped lighten his burden and he relaxed a little. I’m one year out and he still hovers! LOL

It’s difficult to tell you exactly what we go through when recovering from a BMT. A bone marrow/stem transplant involves replacing the entire immune system, regeneration of bone marrow, along with introducing a foreign DNA into the body. This will be a life long recovery to put it mildly. The body and the new stem cells will take a bit of adapting to each other. Yes, the cells came from her son, so it will help because the DNA is a match. However, there is also your DNA and it may not match up perfectly. So her body and that new immune system will need time to learn to cooperate. Hence, the anti rejection medications. They suppress the new immune system so that an attack isn’t launched against her body until some peace accord can be reached. Her body is considered the host of this new immune system. That system will now control her body, but in reality, her body is merely the guest. As an immune system does, it looks for anything foreign, invasive or inflammatory and sends out interceptors to attack. Except right now, because the cells don’t recognize her body, the immune system wants to launch a war against it. The suppressants keep that from happening. She has a very immature system right now and that will take more than a year or two to become fully functioning.
The very nature of the transplant is that somewhere along the line, her old immune system no longer recognized the cancer cells and they were allowed to run rampant with her AML. The premise of the transplant is that the new system will now recognize cancer cells again, wipe them out if they re-emerge and your wife will have a normal, healthy life ahead.
Her body is also recovering from the conditioning of pre-transplant. And the regimen she was on for her AML. This is not just localized healing. It’s difficult to comprehend because there is no scar from a major surgery, no outward signs of anything being different except the normal hair loss from chemo or conditioning and some weight loss. To be frank, I lost my hair 3 times during my treatment for AML and the BMT. My hair started coming back permanently about 3 months after transplant. It grew slowly at first and then by 6 months it grew at a rapid pace! Now, one year later it’s at least 4 or more inches and thicker, fuller and even curly where it used to be stick straight. In the grand scheme of things the last thing I was concerned about was my hair. I wore really cute little head coverings, I have 2 awesome wigs, but most of the time I was happy to let the world see my head in all its glory. 😉

I know you’re concerned about your wife’s mental acuity. The Ativan and Xanax can definitely be playing a role in her fatigue and lack of ambition. I’ve had some 3 hour MRIs and have taken Ativan to sleep through it. So it will have a huge effect in her tiredness! Brain fog is a real thing too. It can happen from the conditioning but it goes away! It’s truly ok if all she wants to do is lie around and watch tv. She’s obviously not given up. She goes for small walks with you and the dogs. She’s recovering from a huge medical event and truly, time is all that can help here. With low hemoglobin, the fatigue is genuine. Your wife is still very early in this great journey to her new life ahead.
Before I go, a few thoughts: How’s your wife’s appetite? Is she eating much? Low calorie intake= low energy. How are her liver enzymes? Any major shifts? This could effect general metabolism.
Have you checked her other lab numbers, ie., WBC, absolute neutrophils and platelets? If they are all down that is another reason for fatigue.
Has she had a 30 day bone marrow biopsy? These all paint a picture of her progress...and she IS progressing. ☺️

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