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I have only gotten information from these forums - I have never posted -- but thought I would help out with the NIH questions !
My daughter has been seen by Dr. Young and Dr. Sloand (mostly by Dr. Sloand) at NIH for almost 8 years. She was referred by her Atlanta hematologist when she was found to have myelodysplasia when she was 15 years old. We had been in a wait and watch state since then, with several trips to NIH for bone marrow biopsies.
Her situation remained stable for those years, with no symptoms other than mildly low counts. But....a year ago, she developed a serious bacterial infection. Her Atlanta doctors worked very hard and were able to pull her through the infection. Along the way, they consulted with Dr. Holland, an Infectious Disease dr. at NIH and we have made several trips to NIH to see him and Dr. Sloand. Since her counts have remained very low, it has been determined that it's time for her to have a stem cell transplant and to cure the myelodysplasia ! She will have the transplant (matched, unrelated, reduced intensity) on August 5th. Her transplant dr. is Dr. Hickstein.
Our experience with NIH has been extremely positive with very communicative and caring doctors, every step of the way. We feel very fortunate to have been referred there back at the beginning of all of this. Every time we go to NIH, we comment on how helpful everyone in the hospital is. We just can't say enough good about the people we have encountered there. My daughter's doctors keep track of her through email constantly. We have full confidence in the treatment she has received and will receive.
Of course, NIH is a research hospital and not everyone will "fit" into a clinical trial there - but I think it's definitely worth arranging for an initial consultation and seeing if they have anything to offer !
I hope this information helps !
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