I definitely feel better today than when I had cystinosis. In the mornings I can go a couple of hours or so without eating and still feel fine, whereas before the transplant if I didn’t eat something as soon as I got up, I would feel very sick. I definitely don’t feel as sick all the time like I used to and I physically feel better in many ways.
Overall, now that it is one-year post-transplant, I feel well in many ways but I still have a bit of nausea and sometimes a tired feeling. I think that I feel that way because my body is still trying to heal and get better. The one thing that is drastically changed is the odor caused by Procysbi® the medicine I used to take for cystinosis. The odor is completely gone now and that has made me feel more confident about myself. I’m not as self-conscious when I’m around people because the smell is gone.
My kidney function has remained the same as it was prior to the transplant. I am now taking about 24 pills a day, mostly for my kidneys. Currently, I am only on potassium, sodium bicarbonate, and L-carnitine. I’m not taking any eye drops or Procysbi® or any cysteamine treatment. Before the transplant, I was taking 54 pills a day!
Going through this experience has definitely given me a different outlook on life. Today, I feel like I can do anything or become whomever I want. There isn’t anything holding me back. In the past, I always had to make sure I had my pills and worried that I would make enough money in the future to pay for my medications.
The hardest part of the whole thing was staying in the hospital for 25 days and not leaving the floor or room. Other than that, my experience was a relatively good experience. I met some amazing people, made lots of new friends, and received some amazing gifts from people all over the world. One day when I have a family, I can show them what an amazing community the cystinosis community is. Thank you all so much for being there for me in the time of need and I hope one day what I did will help your children or someone you know with the disease and we can all be cured together!
