Here’s a chart of my bilirubin numbers, went all the way up to 27, which is extremely scary and now slowly going down after I started being treated with defribrotide 4 times daily. It’s projected my liver will be back to normal by the end of May or early June, then I’ll be discharged from the hospital. So I’m hanging in there, thanks for all the support, it’s truly appreciated! 1,2,3,4… One day at a time. #SPYDASTRONG
Happy to report I’m getting stronger, eating more, feeling better overall and today my bilirubin is down to “10”, at one point it was 21, the normal number should be under 2. Currently I’m being treated with Defibrotide (4x daily) and it’s working slowly but it’s been all positive results so far.
Special thanks to my Doctors and Nurses for all their care and dedication to getting me through this challenging time. Thanks also for the continued support from family, friends, community and anonymous donators around the World. It’s truly appreciated.
September 2015: Originally my transplant was scheduled the day after this event, it was changed the week before to November 1st. I personally never judge ppl, there’s always the possibility of something going on that we know nothing of. Learn from the past, live in the present but prepare for the future and deal with it when the time comes, that’s the way I roll 😁
Lost a lot weight but that’s expected while going through transplant, eating more but still being very careful about overdoing it and slowing down the healing of my gut. Bilirubin is down from 21 to 14.8, normal is under 2, hair is growing, up and about today, 2 months more to go and hopefully I’ll be in much better shape. It’s going to be an epic come back! 1,2,3,4… One day at a time. #SPYDASTRONG (I actually feel pretty good, so this pic is encouraging to see, please be considerate)
Medical update: Hospitalized due to GVHD of gut and liver.
Gut is healing slowly but getting much better and I’m able to eat more, however, my liver isn’t so cooperative at the moment, bilirubin levels are high, (life threatening high) and failure of the organ is a huge concern. Fortunately the FDA just approved a drug called “Defibrotide”, my medical team at NIH got it and was able to start treating me right away, this drug is given several times a day. Since I’ve started Defibrotide my bilirubin levels have dropped but also came back up, this shows I’ve reacted in a good way but I’ll need to do a full treatment to get the best results. I was scheduled to be released April 13th but now have been asked to stay for another 2 months at NIH, I’m humbly accepted. No need to rush home and have a poor quality of life or high risk of organ failure, I’m glad for the opportunity and time to heal. 1,2,3,4… One day at a time. #SPYDASTRONG