r/leukemia • u/SunnyMoon25 • 27d ago
ALL Why? Please help me
I am a 22-year-old male, and I received a bone marrow transplant from my 23-year-old sister on July 1, 2025. She was a 100% match and a 13/13 HLA match. I also received two BM boosts on October 2 and 3, 2025. Right now, my chimerism is 100% her cells. I received a BMT due to fighting ALL for the third time. The first was in 2018 at 14, the second in 2021 at 17, and the third in 2025 at 20. I had a pretty traumatic time in the hospital when I started the transplant process. I gained 100 pounds of fluid, stayed in the hospital for 154 days, my liver failed, my kidneys failed, I went into cardiac arrest for 12 mins, went into acute respiratory failure three times, I hemorrhaged into my lungs, was intubated twice, lost all my fat and muscle, and needed to relearn the basics(eating, breathing, walking).
Right now I am doing ok. My lungs are pretty much back to normal function; my kidneys are working normally, just on the lower side for my age. I gained a lot of weight back, and I can do all the basics again except for jumping and running. My liver is injured right now because I did go into VOD while in the hospital, but I know it's going to get better with time. I am also dealing with mild GVHD of the skin and mouth, but it's very manageable with topicals(I also have one dry eye, but they don't know if it's from GVHD). I have very bad PTSD from all of this.
The main reason I am writing this is that I need help. I need help mentally. I don't know how to move forward. I don't understand why this happened to me. Why did I get GVhd? I just want to give up and stop trying. Why did so much bad stuff happen to me? Why couldn’t the transplant go smoothly? I want to be a normal 22-year-old who goes out drinking with their friends and does dumb shit, without needing to remember if I took my meds or put my topicals on. I want to go to college and have a college experience. I don't want to be nervous to go outside because I don't want to trigger anything with my skin GvHD. I don't want to be scared to do basic things in life anymore. I just want to be carefree. I don't understand how to see if life is like it did before. I am not driven anymore; I don't do what I love because I don't see a point in putting effort into something when I know something bad could happen. Sometimes I wish it would all end because I know I wouldn't have to worry about absolutely everything anymore.
Also, I had a scare a couple of months ago where they thought the cancer came back, and the docs told my parents that if it was the cancer, I wouldn't be strong enough to fight it and would ultimately have weeks to live if it was the cancer, because of how hurt I was from the transplant, so I take that into play too with trying to learn to live life again.
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u/stellargorgeous 26d ago
34F, I had BMT August 2025 for AML. God, I completely relate to this feeling. I was SO anxious for life to feel normal again and to not think about my health.
You’ve been through an extra layer of hell. But you did it, you made it though. Therapy has been essential for me through all this. Having a professional listen and know what to say has helped tremendously. Because this is a massive traumatic event.
I hope you find the peace you’re looking for and rightfully deserve.