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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)Comment receiving replies
Lori,
Thank you. I trust my Caesar salad. Grilled cheese sandwich. I read my packet of no outside food for 100 days. I ate a meatball sandwich for lunch. Just once. Too much.
Did not eat a lot most of the week.
I will say on my counts. They have been steady 3 days.....no big dips.
I have had 2 blood and 1 platelet infusion. 21 days.
Sadly, my caregiver was not ready to have me there yet. In the end, she canceled her yearly Catalina retreat next weekend. She is somewhere this weekend. I will be let out Monday. She has stuff mon/tues/we'd, so she is looking for a sub. My 2nd caregiver is dogsitting. Both thought 30 days.
This has been stressful. Improving as I have means I can be let out earlier. Great if I had family caring for me. I am grateful for friends.
WBC-5.94/PLT-59/all others good.
A day at a time.
More to the story later. I have told COH nurses about Mayoconnect. Also Lori and how this site has helped me in this journey.
Replies to "Lori, Thank you. I trust my Caesar salad. Grilled cheese sandwich. I read my packet of..."
Home at my caregivers the first night. I would love to hear others 1st night out of the hospital. 23 days. My picture is myself and my transporter. She packed the wheel chair with all my luggage to meet my caregiver who just arrived. I toted a large suitcase.
I woke up last night at mid/4am. Usual vital & nurse checks. Crazy. My 1st clinic visit is 4:40pm today. Twice a week for a while. The journey will continue as I build up days.
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Good morning, Katg. Whoo whoo! Seeing your blood numbers rising…you’ve engrafted!! That’s excellent news and right on target.
I’m going to share a little about foods though. With my classes on infection avoidance there was a session on foods to stay away from for the first few weeks. Food such as lettuce and spinach (any fresh salads) were off the table because they can harbor bacteria that could be catastrophic in a new transplant patient. Fresh fruits were to be avoided unless they are thoroughly washed and soaked in vinegar water. Even bananas had to be washed before peeling or cutting. Nothing allowed from a deli, no prepackaged sandwich meats unless they were flash fried/heated to at least 160 degrees. The dietician even made a point of saying to the class, “For you, there is NO 5 second rule! If something hits the floor it’s gone…the floor is lava.” 😅
Your caregiver situation is stressful. I sure hope that gets straightened out for everyone’s sake because having a place to land for recovery is very important. It’s not that you’ll need any constant care but you will require trips back to the clinic for blood work and possible infusions. Plus you’ll be weak/fatigued and not up for a great deal of physical exertion for a while. You’re doing remarkably well for day 21 so I expect you’ll continue improve steadily. Don’t be surprised if you have a string of great days but then overdo the activity and you feel like crud the next day or so after that. That used to bother me until I realized it was pretty normal for post transplant. Slow and steady wins this race…or marathon. 😅
Ohhh, Kat, I give you a virtual hug for passing along information about Mayo Connect to your nurse!! We all need a lifeline sometimes and this is a wonderful forum for support, encouragement and hope. So thank you for spreading the word. It means a great deal to me that I’ve been able to use my experiences to help others and now you’re in that position too. Our stories are now someone else’s survival guide. ☺️