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Husband with AML facing a stem cell transplant
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 6 days ago | Replies (49)Comment receiving replies
Good morning Lori,
Yes it’s been a whirlwind couple of days! My emotions are all over the place.
You make a great point about our doctor not needing to be our friend. However I am also a bit frustrated by the communication with our primary hematologist. She is busy, has a huge practice, and isn’t warm and fuzzy to begin with. But we know she is a leading expert. So there’s that.
We are going to pursue a visit to MD Anderson. But thinking about all of that, being away from home by myself as a caregiver in a new city really makes me anxious. And thoughts about the aftercare post transplant is really starting to creep in and make me anxious. And then there’s the fact that we were advised at RUSH that there could be a change in direction in his treatment (clinical trial?) if they don’t clean up the cytogenetics in his blood.
So, although I’m trusting, or at least trying to trust and keep the faith, this will all be revealed to us soon enough I’m really struggling with all the uncertainty.
You see he has mutations and chromosome changes that are very difficult to treat and relapse is a real possibility after transplant. Thanks again for holding positive thoughts and encouraging me. Shared your email yesterday with my husband and he was very encouraged and impressed. Your kindness and commitment to all of us, complete strangers, is such a blessing.
Mary
Replies to "Good morning Lori, Yes it’s been a whirlwind couple of days! My emotions are all over..."
@mary612 Mary, I really feel for you and your husband and all of these difficult decisions!! I’m glad there are some positive signs for you to hold onto, amidst all the uncertainty and anxiety.
That doctor would be a tough one for me: There are great advantages to an expert, and bedside manner is not important if they get the job done… But for me, good communication, hearing and respecting my ideas and questions, and keeping me in the loop as part of the treatment team is essential for my healing as a patient.
So if you factor out the bedside manner, are you feeling communicated with and listened to?
And if you are nervous about being in a strange city without support, have you considered temporarily moving someplace with a good amyloidosis center that is close to one of your kids or good family friends?
Sending you and your husband support and healing energy! Sherry
You have some difficult decisions to make. I had my chemo and transplant in Indianapolis and lived in southern Michigan, so it took good 3,5 hours to get to the hospital. My husband was my caregiver and made that drive to Indy numerous times. It was still doable, since we could schedule an early appointment, get everything done by noon and be back home by the end of the day.
Bedside manners are very important, since you feel like the doctor doesn’t care about you or doesn’t have your best interests in mind if they don’t have that skill. I recommend talking to a social worker on your team about your concerns. They may be able to give you good advice about how to navigate your experience with this doctor.
I had an excellent transplant doctor at IU Health. His name was Dr. Farag. It made such a difference and helped reduce stress for me. I was also hospitalized at a local hospital and had a very negative experience with a hospitalist there. I couldn’t wait to get discharged and never see him again.
Wishing you all the best!
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Hi Mary, Being a caregiver is a really tough job. I watched my very capable and strong husband age while being my ‘rock’ through all my treatments with AML and then SCT.
As the patient, we tend to just go with the flow and do what the doctors say, take our meds, endure the treatment and side effects…personal focus is quite selfish on our part. We just don’t have the capability or energy to do anything else those first couple of months.
Our caregivers watch us and feel helpless…and bear the stresses of being ‘chief, cook and bottle washer’ for everything else from domestic to medical! Each clinic will have their own protocol for caregivers. Some, such as Mayo Rochester where I was, require 24/7 caregiver for 100 days. I was also an outpatient, which I loved! We rented a hotel suite for 4 months and set up housekeeping 2 blocks from the clinic. I felt that I recovered faster in my ‘own home’ where I could amble over to the kitchen to grab my own food, my own bathroom, etc. I wasn’t in the hospital unless I needed to be readmitted for anything…which I was. But then I could return ‘home’ to the hotel”. My husband hiked daily, brought his computer so he had a little office, he did the cooking, took me to appointments sometimes several times per day, and babysat me. Rochester was an awesome place for both of us because I was taken care of at the clinic and he felt ‘at home’ walking around the city neighborhoods or hiking the trails.
Some clinics, the SCT patient is admitted to the hospital for many weeks or more before being released to a temporary recovery location. I’ve also learned that some caregiving is actually required while IN the hospital. So make sure you ask each clinic so that you know what’s expected of you as a caregiver.
I do have a really good guide for caregivers that I had while in Mayo. While some of the details may be different for each SCT clinic, the basics of care will be the same. Look at the menu first and choose ‘Allogenic Transplant’. That will be what your husband would be having. Read it over and let me know I can help you in any way.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigationMary, I know this is a lot to deal with up front. But it’s all going to work out and unfold along the way. He’s in a really great clinic right now so if the thought of relocating for months is troubling… just saying. ☺️