Venting 

So now that my mom is back at work as a school teacher and my younger brother is a senior in high school I am felt alone living with my disease. I know every teenagers dream is to have the house to theirselves I guess, but I just think of the past. It seems to have gotten worse because of my graft vs host disease I am limited to daily activities. I tend to say I am not “normal” which no one is so, I contradict myself often. At this point in my life I wish I can experience college like every teen out there. 

Maybe One Day someone will hit me up. Lol

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9 thoughts on “Venting 

  1. What kind gvhd are you experiencing? When I did my BMT I had to have a half match, as no one matched me on the registry and my sister was 6 out of 10 but she was so small so they decided to go with my mother. I will say one of the best things I’ve done thus far is visiting with a palliative care doctor. If you have one as part of your transplant team I’d definitely recommend meeting with them. I get awful debilitating pain in my joints and they keep me very comfortable. I met with them when I had the work up appointments before my transplant, but then I kinda forgot about them. After reading your posts I do know where you’re at right now. Adjusting to that new normal really sucks. I want to be able to run around and do everything I normally did and now just being active for an hour or two burns me out for two days. I can’t offer you hope that it gets better, but I can definitely give you comfort that you’re so not alone.

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    1. I have chronic GVHD, so the whole body basically. My brother was a 10/10 match but somehow I am still rejecting it. I am taking a new suppressing med now called Rapamune since prograf wasn’t helping. What did the palliative care doctor do to help you?

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      1. They manage my pain pills to keep me comfortable. They basically are symptom management and are sometimes a little specialized that my oncologists. They help with my anxiety, pain, nausea, basically any kind of physical or mental symptoms I have related to the transplant. I love them and they definitely help improve my quality of life.

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      2. I have that joint pain too! So I guess I just treat myself with the pain med lol. Although I hate it because I feel like I shouldn’t be in pain for someone my age. Most teens are out there and don’t take any medication. They are not considered disabled like I am.

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