Hi Mary! So sorry to hear about the nausea still hanging around. Some patients are really lucky and it’s not much of an issue and then again, there are some of us who didn’t win that lottery ticket!
Every BMT patient has their own rate with recovery and progress because each has a unique set of extenuating circumstances which led them to requiring the transplant in the first place. Some of us have had many months of chemo cycles for aggressive blood cancers previous to the transplant. Others are fortunate enough to only have pre-transplant conditioning and so their bodies haven’t faced as much trauma. As much as the chemistry helps us, it does take its toll. And of course, the medical condition for which we’re being treated can also impact the recovery time, along with all the meds and transplant itself. Brain fog can linger for a few months but seemed to clear for me around the same time my stamina grew. I did lots of sudoku and word games, crossword puzzle, etc.

Quite honestly, I think Dane is doing great considering all he’s been through. The lower chimerism number may improve on its own or may see some improvement by the bmbx. Occasionally the transplant doctor will order an infusion of the reserved donor cells which can give the previously transplanted cells a boost. It sounds like everything else is going well except the difficulty in swallowing. But wow, he’s making awesome progress there! He’s thriving and active…that’s what counts! He may not be getting 100% of what is desired as far as nutrition but he’s not suffering from malnutrition. When his swallowing improves and his appetite returns you’ll be amazed at how quickly the pounds and ‘muscle meat’ can return.

If it helps, I also struggled for about 2 months to get down meaningful amounts of protein and foods. Energy was slow to recoup too. I walked daily, tried to lift a few weights (small milk jugs filled with water) and worked with exercise bands to help with muscle mass. It only helped marginally. Once I was able to eat well again and put on more miles walking, it was a more rapid improvement. The anti-nausea meds were with me for quite a while too.

To refresh my memory I just took a look at a couple of my journal entries. At Day 37 I was down to just using sub lingual Zofran before meals and had daily bouts of ‘morning sickness’ that came in waves. Still had my “barf-o-matic” bag with me wherever I went. 😂 I had a cute little carry-bag for my shoulder. In it, besides essentials for the hours at the clinic for infusions, I had my ‘bom’ bag…a large ziplock lined with paper towels…just in case!
By Day 50, I made mention that I no longer had unpredictable nausea but still had some that came on for about 2 minutes after a bowel movement.
Day 60’s entry was a hoot. Apparently it was a big day for me. I had finally tipped the scales at a whopping 50 kilograms! I got high fives from my doctor and his staff! (I had been down to 43 kilos) My taste buds had grown back so I could actually taste food again, nausea had disappeared and there was ‘meat’ being replaced on my bones.

When my strength and stamina returned, my doctor had me check in with PT. The time spend with the therapist really helped me get back in shape with core strength for balance and also get my glutes back. LOL. Literally ‘lost my butt’ during the months of treatment with AML and the transplant. I did walk 4 miles per day during my chemo rounds in the hospital pushing my IV around the bed tower! But it did nothing to keep the booty from looking like deflated sad old party balloons! 😂😂

Anyway, where I’m going with this meandering reply is that you are amazing with wrangling all of Dane’s needs from food/nutrition, to home infusions, meds and outings! You two are an invincible team. It’s not easy when two active people are having limits to their daily normal existence. This is only temporary though! It’s ok to not be ok and to have life slow down. The old proverbial ‘take it day by day’ really rings true. Soon enough this will be a summer in the rear view mirror! Air hugs to both of you!
How’s that new grandson??

I love your post. Day 42!!! I got my car on Day 72. It sure opened my life again and made me feel normal.
I hope you are writing in a journal. I found using "notes" in google was my daily tracker. Be good to yourself too. Caregivers need self-care.

I am so glad to hear your good news. Hope ur husband continues to do well.