Hi Mary, Ooo anxiety is a cheeky little devil, isn’t it? Fills our heads with all kinds of negative thoughts! If it’s any comfort, fatigue isn’t uncommon well into many months after transplant. We all recovery at different levels and really, if there is still nausea plaguing Dane, that is a big culprit right there. It’s a stamina robber. I know I improved greatly once I was able to start working my way off the anti-nausea meds. I found that they can slow the normal peristaltic gut action and contribute to the nausea itself. I began relying solely on the sublingual Zofran melts just before eating. Slowly my guts improved. Before that time though, gaining weight was impossible. At least Dane isn’t losing so he’s holding his own right now. That’s an ok balance. He’s also having to limit some of the foods that would help pack on calories such as ice cream because of the mucus it causes. So I think he’s doing the best he can right now…this just takes time.
I checked back on my records. My blood numbers fluctuated from week to week. At day 59 my platelet level flagged as low, down to 144. A week later they were up to 183, only to have dropped again the next week. There’s still a lot of recovery taking place inside Dane’s body! Try not to get too hung up on numbers right now. If his doctor isn’t worried, then you don’t need to be either.
The BMBX will be a good source of information. Pretty sure you’ll be having some ‘scan-xiety’ with waiting on those results. With the one number lower on his chimerism his doctors are making sure things are going well overall with the BMBX. Occasionally if there is one part of the chimerism not at 100% the transplant doctor may consider infusing some of the cells that were held back and frozen after the initial transplant. This ‘recharges’ the immune system to make it a little more aggressive. Similar results can be sometimes be achieved by reducing the amount of the anti-rejection meds which have helped to hold the newly implanted stem cells back a little until. By lowering the tacro trough, they become more aggressive and may help raise that chimerism. Again, we all recover at different levels. His team at Rush is on this! ☺️
Sending positive thoughts your way for a super clean BMBX. I hope the nausea disappears soon! Air hugs to both of you!
Lori,
Your message really hit the spot today for us! Thank you for sharing your platelet experience around this same time in your post transplant experience.
Your reassurance about how the healing process is so unique for every individual is so helpful as well. I agree that as soon as he can get along without the anti nausea meds, his brain will be clearer and his digestive system will start getting functioning better too. Chemo is bad enough on memory, processing, and functioning that it doesn’t help to have it clouded up by those additional meds!
Funny you mentioned the impact that reducing the anti rejection meds can have on chinerism, as they just reduced his Tacro today because it was too high. Hope that helps bring the chimerism results up.
Man, there are so many things to be vigilant about during this process.
Thank you for the positive vibes for a clean BMBX. We are hopeful it’s going to be good news! Your encouragement really goes a long way in helping us have a strong and positive attitude.
Thank you Lori!
Air hugs to you too!