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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Sep 7 11:43pm | Replies (117)Comment receiving replies
Hi Lori,
I love your sense of humor! Thank you brightening my day!
We expect his hospitalization to be 4-6 weeks. I am thinking I will spend as much time with him during the day as I can but plan on taking breaks to get lunch, exercise, etc and meet a couple of friends for lunch or dinner now and then.
I’ve heard how difficult the first 14 days or so can be until grafting starts and I guess my assumption is he may need an advocate and or extra comfort during that time when he is most ill. I know I will be there to encourage him to walk daily and get as much nutrition as possible. I understand extreme fatigue will be a challenge, not to mention all the possibilities of other complications our transplant team had to share with us during our orientation.
My sister had an autologous transplant 15 years ago and she says her doctor told her she needed to have someone stay with her at night, especially the first two weeks, even though she was an inpatient. I have not heard that from any source about BMT or HSCT these days, have you?
It is still amazing to me that Mayo and some other cancer centers perform the transplants on an outpatient basis, again, given what I understand are the risks of complications and the various physical symptoms caused by conditioning chemo, etc. I am so glad it was a positive experience for you and your husband.
We are also fairly private people, don’t have a long list of family and friends who can be my back up as caregiver. Everyone has busy lives but I’ll welcome the times when they visit so I can take a break.
We are packing slowly and have gathered many of the items you’ve recommended and then some. I plan to decorate his room for our wedding anniversary which is the same day as the stem cell transplant, unbelievably. And I’ll put up a lot of family photos and other things to warm up the environment.
Our dog is set to be taken care of by a dear friend, but I dread the hand off on Monday. Just have to keep my head down and moving forward. And I’ll ask for lots of photos of her over the next month.
Thanks for your honest experience with how to manage visiting and giving ourselves some healthy space. I plan to bring some things to do with my hands and my mind while he rests or while I am away from him on my own. He is encouraging me to plan that as well.
I don’t expect to get bored especially with all the extra responsibilities I’ll have when we get home from the hospital. I just want to avoid burning out honestly.
Again, between you and @jrwilli1, you give me hope that we will make it through this and there is life after. Thank you!
Mary
Replies to "Hi Lori, I love your sense of humor! Thank you brightening my day! We expect his..."
Hi Mary, I just feel it’s time to check in with you and your husband this morning….yes, I am one of those whooo whooo people who feel ‘vibes’. 😅 I know we talked about your husband’s transplant happening on your anniversary but I don’t think we discussed an actual date. So, where are ‘you’ in the process? Pre-transplant testing? Preconditioning happening or is this a week or so out yet? Inquiring minds want to know. ☺️
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Good Morning, Mary! Wow, you’ll both always remember your husband’s new Re-birthday! Same as your anniversary. Hopefully that doesn’t mean he gets skipped over for his 2nd birthday gift each year. Geesh, that’s like having a birthday near Christmas. LOL The celebration of my arrival on the planet is in January. My CELLebration of re-birth is the end of June. Spaced perfectly for 2 celebratory gifts. 😅
Sounds like you’re getting all the ducks in a row for the big day. Like you, I find it interesting the different protocols for transplantation depending on the Clinic/hospital. I hesitate to bring up my story of how it was handled at Mayo because I don’t want to plant any seeds of doubt for your husband’s transplant! Your husband is in a very well renowned transplant center and there should be no shadow of a doubt with them! Trust the team and the process!!
From my experience with being an outpatient at Mayo, I found I felt much less like a patient, being able to convalesce at my ‘home away from home’ 2 blocks away. Our hotel was connected to the Clinic and short wheel chair ride (first couple of weeks) down the enclosed subway system linking surrounding buildings to the Clinic.
I was able walk around the apartment, get my own food out of our fridge when I was hungry and not having to rely on hospital food service. I was so nauseated, I can tell you nothing on the menu would have fed me. The transplant floor had a well stocked fridge for patients but even that didn’t appeal much. So those little meals my husband had prepped and ready were literal life savers. In our apartment I could shower and get dressed on my own, use my own bathroom all in the safety of my completely sanitized and people free environment. Statistically, (which is totally a Mayo thing) patients are less susceptible to infections or health risks when not being confined in a hospital.
However, just because I was an outpatient it didn’t mean I was left to fend for myself. If there was ever an issue I was immediately admitted to hospital for care. As routine, I reported to the clinic daily (with my husband) for blood work and infusions of meds or whatever I needed.
You’ll have an entirely different experience to relate here. Try not to overthink any of this! I know I’ve said it before…let the team and his doctors do the worrying for you! This isn’t their first rodeo. They’ve got your backs…both of you!
This will all unfold as it happens. So while it’s excellent to be prepared for any eventuality, most of them you won’t even be able to predict. But you’ll handle them as needed…when needed. ☺️
Believe me, there is a life after transplant! I walk around humming with unabashed glee for being alive…🎶 “Gonna be the best day of my life…”🎶
Ok, as my daughter says…Mom, turn the perky meter down. You’re in the STUN zone! Haha. Have a great weekend!