Graft vs Host
I was 14 when I was diagnosed with leukemia. I relapsed twice. When I relapsed for the first time we found that I had blast cells growing on my brain, I had Intrathecal chemo and radiation but eventually, I fell into a coma and they had to do surgery to relieve the pressure. I went to a hospital 4 hours away to have my stem cell transplant and I was in remission for 3 years until I relapsed again.
My second relapse
On my second relapsed I had to have a bone marrow transplant from a donor. My recovery from my transplant was really rough that I had to be put in a medically induced coma. I ended up developing Acute graft vs host after my transplant and it has become chronic.
I'm 4 years in remission but I'm dealing with neurological issues and chronic GvHD which is hitting my lungs the hardest. The past year my health started to more decline quickly and I was in ICU a lot with complications. We looked into lung transplants but I wasn't eligible to pass the first part of the evaluation.
Trying to preserve as much of myself
I was in denial about how upset I was about that and after a while started to take it really hard but I'm now trying to adjust to life again. It's really hard losing your independence over and over after working so hard to regain it. It's really hard knowing now that what you are losing will be gone for good.
But I'm trying to preserve as much of myself as I can for as long as I can. I'm also trying very hard to work on my mental health as well but there are alot of things that help. I recently got a new drawing tablet and I discovered that I really enjoy drawing and playing games online with my friends. (:
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