janq,
Hi! You are correct. NIH is the National Institutes of Health in Rockville,(Bethesda) Maryland just outside Washington DC. You may research it at
WWW.NIH.Gov. It is not a "hospital" per se, where you can just go if you choose to. You must be accepted into a clinical trial for treatment. You can do this yourself by calling Olga Nunez (Dr. Neal Young's clinical nurse) and submitting test results, biopsies,etc whatever she asks for basically. My Doctor(here in FL) facilitated this for me. At first, I just had an appointment to be seen in the clinic to see if I fit in a trial after they redid their own BMB and was supposed to fly home to await the answer. Well, things were so bad that Dr. Young admitted me right then to await the results of the BMB and see if my sister was a match for me. They only supported me at that point (no treatment was given). Once all the info was gathered and we could make an educated decision about treatment options,that's when I knew the only option for me was to stay there and try the ATG/CYCL first before even considering a transplant (my sister is a complete match).There was no trial, at that time to go straight to transplant anyway, so I would have had to come to Shands to do that. I opted to stay at NIH,once given the ATG and had it not worked (it did) then I could've stayed there for the transplant. I stayed there completely alone (my husband flew home on day 2 to take care of my home and kids) from May 14th to June 10th. My husband sent me clothes(I brought none),they have laundry there,cafeteria,etc. It was scary ,yes, but fine..more than fine.......I am alive thanks to them, my new family! I flew back up at 3,6,9,12& 18 mos for BMB's and then once ayear and now every 2 years. Dr. Neal is wonderful,the PA's are great and nurses are awesome. If you are "Unlucky" enough to be diagnosed with a disease, I feel I am VERY "Lucky" to get one that NIH is researching.
I wish you well.
Judi