my name is alena and im 16 years old. I have been on steroids when i was a baby, after my heart transplant for about a year and have been fine since. Then recently about 3 years ago, I developed PTLD, a form of lymphoma cancer and was put on a heavy dosage there of about 60mg a day. I have been off that since and been put on 5mg, with little to no side effects. Now about two months ago started rejection of my earlier heart transplant where I have been put on anywhere from 40 to 20 mg a day, varying by week, as the rejection keeps coming back. We think we have it stable for now, my dose is 40 mg twice a day, and will be moving to 20 twice a day on Monday. My face has gone up and down severely, with extreme hunger. I have been lucky enough to keep my friends, but have missed a lot of school because of this. I dont know if my grades are ever going to be enough to get into college, and I really am not social anymore on the weekends, because of the way i feel about my body and looks. Is anyone else like this? Any advice wold be great.
Sorry to see what you are going through. Steroids are double edged weapons; we have to always weigh the pros and cons. As they are very much needed to fight the rejection, moon face could be a consequence to this. But as the dose is lowered, the side effects should improve. And don’t worry about people who make friends based on appearance. Personality is important, but it’s at its best only when you are most comfortable in it. So, don’t feel bad about your looks; get comfortable and work towards your health. Good Luck with your therapy.
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