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Anyone had successful stem cell transplant for AML?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 2, 2022 | Replies (163)Comment receiving replies
Brad, gosh I’m so sorry she’s having such a difficult time coping. It’s customary for a transplant team to have spiritual and mental health advisor. Someone who will help mentor her and provide some coping skills, counseling and help provide her with some mindfulness exercises. Does she have a patient portal for her BMT-team at her transplant center. Seriously, I would be in contact with them to help YOU and your wife. They can also give YOU ideas on how to cope.
Also, I’m not sure where her cells came from, meaning the cell procurement center but Be The Match foundation has excellent counselors. Just go to their website..google Be The Match and you can access all kinds of information.
Your wife has been through a great deal. Just going through the treatment from AML is challenging enough. Her body now is trying to heal from the intense chemo pre-transplant and all the new medications being pumped into her system to help her through this next phase. It is mentally and physically challenging.
There is the grieving process which takes place...for her old, predictable life. She’s is overwhelmed right now that she can’t see a future. I promise you and her, there is a future! It’s well worth the effort of fighting this challenge.
I see in another post you said BMT patients go through hell. Well, that is an interesting observation. As I said it is quite a challenge and not for the feint of heart. Perhaps that’s why anyone with a BMT is so euphoric, appreciates every moment and feels stronger and more confident when we have passed the difficult phase. The first month is the roughest and into the second things start to mellow out gradually.
It is one heck of a journey but we get the opportunity to live our second great life! Please don’t give up hope. As her caregiver, just remain stoic, a good listener, be patient. And please take care of yourself too. I know you feel helpless. My husband did too. He’s always been a man of science and engineering. Problems can be fixed and have predictable outcomes. BMTs don’t. However most are very successful but it takes time for our bodies to adapt to a completely different DNA! if there are issues with GVHD along the way, her transplant doctor and team will jump to the rescue.
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loribmt, yes, I communicate frequently with the psychologist assigned to my wife and my wife has talked to her a couple of times with no noticeable benefit. I talk to her (psych) because I reach out to everyone I can on her team all the time. As I said elsewhere, I can be annoyingly persistent! 🙂 I sent the psych flowers this week because I told her she's got a very difficult job listening to nothing but bad stuff all week, every week. She says it brightened her day. Yes, they have a portal and I'm the one who set it up and only one who has used it. Not much there. I can and have emailed her MD a few times and he's good about responding as was the coordinator who we dealt with before the transplant.
Honestly, I've always been her best source of support perhaps because I know how she ticks better than anyone else. I've never seen any counselor make any positive impression on her even before BMT. She was actually doing better when she was in the hospital in some ways, it appears, because she had people constantly coming in and out and that provided a distraction. As we approached retirement in 2018, we realized that she was going to need to FIND some form of distraction because she doesn't really have a hobby and hates games (cards, board games). We previously fixed up some rental properties and she obviously can't do that now but the thing she likes to do most is paint interior walls (I got to do the rest :-)). She used to like to walk through houses under construction but that's harder now.
I was mostly just wanting to hear from other patients what worked for them, not suggestions for me. I think, in the end, there's no easy way out and you folks have confirmed for me that it's just a matter of surviving one day at a time. Things will get better in time which is what I tell my frequently but it doesn't make her feel any better today.
As for the donor, it was our son. Thanks for your response!