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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 12 hours ago | Replies (581)Comment receiving replies
I hope all has been resolved and your husbands care plan is back on track. I am feeling very much in synch with you.
My husbands allogenic transplant here at Mayo Rochester is scheduled for August 22. Our home is four hours away so we moved here, temporarily, a month ago. Most of his pretransplant testing went fine but there were some issues. It has been a real roller coaster of scheduling changes and medication adjustments. I have struggled with not knowing who is coordinating all this: I am told it is his transplant specialist but of course it is difficult to get messages back and forth with a very busy MD.
We are on track now and managing the changes as they come. His first day of conditioning chemo was yesterday. We’ve had a lot of good patient education and support from peer mentors ( looking at you Lori) and the nurse managers at the transplant center are very good: I would prefer to have just one contact person but the “team model” apparently means several people. The reception folks at the transplant center always seem to know what to do with my questions and we are now with the stem cell transplant team at the hospital so in good hands. And we need them: we’ve been through a lot in life but this takes the cake.
Just want you to know you are not alone, keep advocating, you are his champion and that commitment will help your care team do the best for him.
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@dwolden
My husband's first day of conditioning chemo was yesterday (8/16) as well. Things seem to be back on track with the team. We are just taking things one day at a time now. I feel fortunate that we are close enough to home that I can run back and forth as necessary. It is probably a good thing that they won't let him come home immediately after the transplant. I think the temptation of doing things around the yard would be too much for him to resist.
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Now that your husband’s in Station 94, he’s in the most excellent hands! His care team there will be consistent though, you may see some different on floor doctors daily. However, they are all briefed each day as a team so they are fully aware of each patient on that floor. Hopefully all your pre-transplant jitters and scheduling ‘mis-haps’ or whatever they were are all in the past and it’s smooth sailing from here on out!
I smiled with your line “ we’ve been through a lot in life but this takes the cake.”. Ain’t that the truth!! My husband and I too…we’d been married 45 years at the time I received my transplant after the previous months of chemo. Wow, talk about a life adventure. Now we feel like we can manage anything after that!
I’ll be thinking of you both as you go through this week! The first couple of days most likely won’t change much for your husband with the pre-transplant chemo. But by day -3 or -2 he may start feeling a little more loagy…fatigued and feeling ‘off’…that’s the best way I could describe it.
Anyway, we all react differently. So as long has he’s feeling like eating and drinking, have him work on keeping up his nutrition. I think the kitchen closes at 6PM so it’s ok to order extra foods. I had meds to take in the middle of the night so I’d frequently order extra banana bread so that I had something to nibble on at midnight. Also, my husband would bring lunch or dinner that he made for me. There’s a refrigerator in the Family room off 9-4 where people can put foods if they need to. We didn’t really keep anything there because we lived less than 2 blocks from the clinic so Rick would just bring a lunch bag for me.
There’s also the snack room for transplant patients. You can make toast, there are premade sandwiches, protein powders, pudding, popsicles, etc., available 24/7.
Dorothy, are you spending most of your day in the hospital or getting out and walking around…keeping busy?