Quote:
Originally Posted by Hopeful
Hi Matthew,
I am glad that you got an appointment with Dr Young. Your mother's case seems unique in that she has dramatic rises and falls. It will be interesting to hear what he recommends.
Dr Young is paid by our taxes  I think the only way you can be a "regular" patient is if you become part of a clinical trial. However, if your mother is on the path to wellness, he will be an amazing guide for both you and your mother's hematologist.
Good luck! |
Hello Hopeful,
You are right: Dr. Young's nurse at NIH said that he would help my mother, but his team would not take her on as a full patient unless he thinks she likely would be helped by some treatment he could give her in a clinical trial. Either way, he would get involved.
Her neutrophils are still averaging around 1100 for the past 3 months, going up as high as 1500 and sometimes down to 800. They said that is a really good thing. As to why she has such big rises and drops in blood, it is a mystery. It might not be explainable, she said, as this can happen with aplastic anemics while they are on the way to recovery. Dr. Young should weigh in on all of this. The fact that she does get rises is a good thing, but the sudden big drops is bizarre. Her platelets have never improved. We thought her platelets would hold at 10 a few weeks ago, and then her platelets ended up at 7 no long after we said that. LOL
Anyways, it may be a month or so until I hear back from the NIH (until all records are sent, etc.).
If Dr. Young's team can't take her on as a full patient, we still may end up switching to another hematologist like Dr. Brodsky at John Hopkins. Her current hematologist is no expert in the disease, which she now clearly admits.
Please take care.