Preparing for consultation & BMT transplant

Good morning @itlooksunny! First thing I want you to do is breathe in…hold and then a nice long exhale as you feel the tension leave your body. Then we’re going to have a nice long chat. 🤗
There’s a lot of information flying at you and your husband right now…and wow, it’s a lot to process. But I promise, you’re going to get through this one day at a time, step by step.
You mentioned there are appointments coming up for Dale. They should be listed in his portal but more may be added or rearranged as they are popped into place. By the time the first appointment date is near they should be locked in final order.
You and Dale will both be present. For some tests you’ll be in the waiting room so bring your phone, tablet/charger, book, snacks, water…
Mayo is very thorough with their educational programs. They want both you and your husband well informed and comfortable with what is taking place. The appointments will be for Tests/procedures , Consultations with BMT doctor, BMT Nurse Coordinator, and possibly other members of the BMT team (social work, psychiatry, etc.)

As caregiver you are expected to be with Dale at all appointments as a 2nd set of ears. If he has sedation for some tests like a bone marrow biopsy you are required to be waiting for him. You’re Team Dale.

The classes are with real people, such as the nutrition class. Joy or one of the other dietitians will lead the small class to go over diet, food, food handling to avoid infection and the like. These are easy classes! No tests at the end. ☺️
You’ll also be taken on a tour of Station 9-4 The transplant floor. That way you’ll get familiar with where Dale will be for a few days until an outpatient again.

As caregiver yes, you’re expected to be available 24/7. But that doesn’t mean you can’t leave or take time out. The first 2 weeks after transplant are generally the most challenging for the patient with some weakness, fatigue and nausea being the chief complaints. So you’ll need to be available for support, for taking him back and forth to appointments at Mayo, sometimes one or more times daily for infusions or follow up appts. Early on he may need some minor assistance walking or being pushed in a wheel chair for a few days. (They’re available at the clinic for free) You’ll need to prep food and maybe help him while getting dressed if he’s weak. Things like that. But if he’s feeling well and comfortable you can certainly duck out for a food run, take walks, exercise and such. It’s not like having an infant where you can’t leave.

You will also be given a card with phone numbers to call 24/7 for Station 94. The team is always on standby to help you or Dale with any questions and concerns you might have! The team is like a security blanket. ☺️

Dave is lucky with requiring only one dose of chemo. This will be less harsh with fewer side effects. And I promise YOU are going to be fine and together you two will be amazed at what you can accomplished together. ☺️

Hi Bev,
My name is Deb and I am 61 years old; had my allogeneic/donor stem cell transplant in November of 2023 for CEL (chronic eosinophilic leukemia). I wanted to give my 2 cents on shaving hair. For me, with hair below my shoulders, I waited to buzz it until about a week after the intense chemo when I noticed it falling out quite a bit. I buzzed to about 1/4 inch so it was unlikely to nick or cut - but check with your doctors to make sure you can wait. I was very happy with that decision because for me it psychologically helped to look and feel like myself while going through the chemo. And when all my hair started falling out a few days after the buzz cut, it was easier for me to deal with lots of 1/4 pieces of hair vs long hair. So, bottom line - I'm glad I waited a little to cut it but glad I cut it before large clumps were falling out. Make sure you bring "chemo hats" because you'll want them for warmth and it helped me to not see my bald head every time I looked it the mirror. Also, regarding chemo side effects - it varies greatly. I was told of so may side effects that I was very scared going into the transplant. But my reality was much better - I had nausea which took about a week to get under control. But no other tough side effects. I know that was very lucky but I wanted to let you know it is possible that your husband may have very few side effects. That's not to say it's easy but it may not be as bad as they warn you of. Also, I was very anxious before transplant but the transplant teams are so organized and on top of things in the hospital that I actually felt almost no stress at all once I was admitted. All my best to you and your husband.

Thank you!

Dale was on Revlamid they had me so terrified! I slept in the same room as he for 2 weeks fearful I would not hear him! We have a 1911 house, bedrooms & bathroom are upstairs. Have made Dale a bedroom out of our dining room. Dale had an 8.5 hour surgery, tumor was intertwined with his spine so mobility is also an issue!

Will Mayo give me a copy of caregivers guide when we get there?

Hi Bev, as part of the educational program of the pre-transplant routine, you’ll collect several folders, each with a notepad and informational booklets & articles for the classes or sessions you attend. Lots of reading material to back up what you learn first hand with the instructors.

It can feel overwhelming at the time. But when Dale actually begins the process from cell collection, to chemo, to cell re-implantation and recovery, all of it will unfold and make sense.
You’ll also do well to rely on his BMT team. They are very good at what they do. While this is ‘your first rodeo’, it is not theirs. The transplant staff have seen and coped with everything.
I was reassured with my doctor and his staff telling my husband and I that we need to leave the worrying to them, (the BMT team) so that my husband and I could relax and concentrate on recovery without constant anxiety. That was a huge comfort! It was a unique experience to be able to place full trust in my medical team to take care of me! It really works out the best when we follow their guidance, taking meds on time, drinking the amount of water recommended and getting the rest needed for the body to heal itself.

I know you have a great amount of anxiety which is difficult to rein in. Have you talked to your doctor about possible anti-anxiety meds to help you? There are also very helpful mindfulness exercises to help with anxiety and coping skills. Have you tried calming meditations or an APP such as Headspace.com?

I have a prescription but one medical professional told me take the a.m. another bedtime! Confused. Don’t drive until you know how it affects you! I am my husbands driver! Hydrobromide 10 mg. I am very sensitive to medicine so I did not take it!

insight timer app to has wonderful meditations and pieces to listen to for quiet.
This unfolded for me just like Lori said. I believe being the caregiver is tougher as you are not living the path, you are walking it. Your husband's body is living it. The pretests were manageable. One at a time. My hair cut was spoken about in another post. I had 2 chemo does in the hospital. I asked how soon my hair would come out, found out the Positive Image Center would come to cut my hair in my room, so i scheduled the date and time.
You may have checked the posts out, but there are posts for caregivers on Mayo Connect. How you fell, what you fear, the what ifs will likely be shared on those posts.
It is real for you, and finding resources that ease your anxiety will benefit your health. You as Lori said are team Dale. Your good health is a must.

My husband is plus Day 26 after transplant. He also had MDS. Your posting was so reassuring as we continue to navigate this journey. Thank you for posting.

chefra. I pray his experience was like mine. I took every med they had for me daily and i drank half my bodyweight in water to flush my system. Then i started walking which from Day 60 after transplant i have kept up.

I hope you have heard what many of us here. That is, we are bonded for life. Once a transplant patient, always one. This year in May i will get to attend an annual transplant reunion at City of Hope. By then I will be one year and one-month past transplant. The kind words and support you find in the mayo contact connect world is a valued tool for recovery. A tool and gift straight from the heart!!