Tuesday, February 28, 2023

Day -9 - Transplant

Today is actually rare disease day 2023 - I was born with Diamond Blackfan Anemia - basically my body doesn't produce any red blood cells. I've only lived these past 20 years because people donate their blood to me. Isn't that crazy? Say if people just didn't donate blood ...ever. Then I wouldn't be here. Over 300 people have saved my life for me to be here today - so I can have a chance at being cured thought this Haploidentical transplant. Thanks to my amazing Doctor, Dr. Katsanis at Diamond Children's... he will help me to be cured. Along with his amazingly smart TEAM of nurses and other staff, I'm so ready to make my own red blood cells! Let's GO!

So we started ATG today ... it's hard to explain, it's like chemo but not technically - SUPER interesting, you can read about it .. but I got the rabbit form, which is funny because I ordered carrots for lunch. Haha! I got a transfusion last Wednesday ... and today my hgb was already at 9.3 - which normally I get transfused at that level to live life. It's only been 5 days ... wut. I'm sure I will get a blood transfusion soon, this is all a lot to deal with. Probably form surgery etc. my red cells are low, and my heart rate has been high. It could be because I'm nervous too. I slept because they pre med me, so I took a long Benadryl nap. I definitely felt blah. Even my (super cute) nurses were like, she's not her bubbly self. After I was ok though.

Speaking of my nurses, how cute are they? Hannah & Rachel = double trouble! They will be with me through most of my bone marrow transplant journey. I'm so thankful for them...we took a polaroid. Love them.

This is going to be hard, but it will be worth it to come out on the other side being healed. I've waited a long time for that. Please God lay your healing hands over me, through this bone arrow transplant team. AMEN! I can feel all your prayers all the way to the hospital, thank you so much for following along my transplant journey. 



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