Started the 1st 100 days of life as a SCT patient: Grateful

@janetlen, You may find once engraftment happens that the diarrhea may slowly ebb. That is so miserable.

I was really fortunate not to experience that side effect, but nausea was a close buddy for several months, making it challenging to eat for sure. As an out-patient, I was convalescing at our hotel suite 2 blocks from the clinic. It had a full kitchen which was great. So my husband had small snacks prepped and ready for me when I felt like munching. I simply could not sit down to a meal with him. Just seeing a full plate of food would send me running. LOL. So I’d have little bites of a BPJ sandwich or bits of broiled chicken, bite sized pieces of cheese, couple spoons of pudding, that type of thing. For me, the consistency of foods made most things unpalatable. I had no sense of smell or taste. The months of chemo preceding the transplant took care of that! However during those times of chemo and following the transplant I never experienced diarrhea. I’d eat a cup of yogurt daily mixed with about a teaspoon of ground flax. The nurses felt that was my secret to avoiding the worst of the gut issues. If you haven’t, you might want to try some Greek yogurt or even Activia. Maybe it will help restore your gut biome.

For clothing. I know what you mean about the disconnects from IV being a critical time for bacterial invasion. I’d time my clothing change around IV changes or flushes. Since I would be disconnected anyway for heparin flushes, I’d quickly swap out my v-neck t shirts. Honestly, staying in a hosptial gown made me feel like a patient or invalid. It was demoralizing. So daily, I wore at least a t-shirt and yoga pants and a little fleece jacket for warmth.
Do you have a chest port or Picc line in your arm?

As you recover you may also notice that the fatigue you’ve lived with for years slowly wanes. With your bone marrow/immune system functioning more normally in the coming months you may gain more stamina and endurance!
The next week or so should be the worst of it! I’ll check in with you along the way! Air hug!

Good morning, @janetlen. It’s been almost two weeks since I popped in to see how recovery from your BMT is coming along. Hopefully you’re finding a few foods that are more appetizing now and that you’re gaining strength/stamina daily. Being in the hospital sure wasn’t your traditional Thanksgiving Day. But if all goes as planned, this transplant can help assure you’ll have many more holidays to celebrate with family and friends…a true Thanksgiving. ☺️
How are your labs looking??

@loribmt engraftment happened on the 27th. I am thankful. Nausea is a real problem. I am hoping today I start turning that corner. Diarrhea is sub-siding. Blood work is great! 😃

@janetlen Congratulations on those new cells setting up housekeeping in your marrow and getting down to business. Usually once engraftment happens, recovery can begin in earnest. I’m relieved along with you, to hear the ‘lower digester issues’ are finally subsiding…hopefully the upper issues follow suit quickly. Honestly, nausea was my ‘least favorite friend’ for about 2 months. After that it diminished a little more each day, happening briefly in the morning. Like morning sickness! It was pretty common for me to carry around in my shoulder bag, a large ziplock baggie, paper towel liner inside for “just in case”… Managed to avoid using one often but nice to have at the ready if things decide to head north unexpectedly. ☺️
The best news is the blood work looking great!! That is a barometer of the important things! Somewhere around the 30 day mark, you’ll most likely have a Chimera test. A blood test that will check to see how well the graft is taking. The printout will be in % of Donor DNA vs Recipient DNA. We hope for the best with 100% donor, 0 recipient. But that can vary from person to person this early. Just reaching engraftment is a celebratory milestone! High fives all around!
Hang in there, Janet! Day by day you should feel improvements. Air hug!