Medical update: Haplo-identical Transplant November 2015 at NIH, discharged and readmitted a couple times after, most recently admitted February 2016 to June 10th (4 months). I’ve been home again for about 3 weeks now.
The transplant seemed to have went well as far as getting rid of most of the Lymphoma in my body, the challenges I currently face are from GVHD (Graft vs. Host Disease). Since admitted in February, I’ve been treated for GVHD of the Gut, Liver and Skin. It’s very complicated to keep all those things under control and still stay totally healthy at the same time, that’s why the 4 month admission was so critical.
After 2 months of treatment for my Liver, the bilirubin numbers came down from a life threatening high of 28 to now 7 or 8, the normal number being 2 or under, so although my liver is not totally back to normal, I’ve shown great progress. My gut is slowing repairing itself, I have to constantly remind myself not to over eat, which can do much more damage than one would ever imagine. Likewise with my skin, most of it has peeled and flaked off but rebuilding slowly.
I still have weekly clinic visits and infusions at NIH and I’m also taking a ton load of medication, my biggest concern is I’m not gaining any weight but it’s due to steroids I’m taking to help with my liver, this medication unfortunately can make you weak and waste your muscle mass, which makes it hard for me to walk and move around at times, this is also why I walk with a cane now.
All that to say, I think and so does my Doctors that I’ve made great progress and are really amazed that my body was able to withstand all it’s been through so far. It’s going to be a slow process and long road to recovery but better days are coming. My immune system is still compromised so won’t be out and about in huge crowds for a while but it’s good to be able to see family/friends more often.
I can’t say enough thanks to all my supporters and well wishers local and foreign but must give an extra shout out and BIG RESPECT to my DMV Community, I’ve always tried to be there for you but it was overwhelming how you guys came together and supported me, helping me through this rough time. It’s a humbling experience which I will forever use in a positive way.
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“1,2,3,4… One day at a time”
“Cancer is NOT a death sentence”